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Men’s perceptions and preferences regarding prostate cancer radiation therapy: A systematic scoping review

Open AccessPublished:October 25, 2022DOI:https://doi.org/10.1016/j.ctro.2022.10.007

      Highlights

      • Patient perceptions are important in addition to clinical and technical considerations.
      • This scoping review found a paucity of prostate cancer patient perception literature.
      • Twenty-seven articles covered pre-, during and post-treatment pathway phases.
      • 5 Main themes were: experiences, information, side effects, preferences and support.

      Abstract

      Purpose

      To assess the literature on men’s preferences and perceptions regarding prostate cancer radiation therapy.

      Methods

      A scoping review was undertaken as per JBI guidelines. Searches were conducted in PubMed, CINAHL, Scopus and Science Direct with search terms including “prostate cancer,” “radiotherapy,” “radiation therapy,” “radiation oncology,” “patient preferences,” “patient perceptions” and “patient experience.” The resultant studies were mapped and grouped according to the emergent themes and pathway stages.

      Results

      A total of 779 titles and abstracts were screened by two independent reviewers. Fifty-two full-text studies were reviewed, with 27 eligible for inclusion. There were 4 pre-treatment, 13 during treatment and 10 post-treatment studies covering broad themes of information needs (n = 3), preferences and decisions (n = 6), general experiences (n = 8), side effects (n = 6), and support (n = 4). There were a mix of methodologies, including 11 qualitative, 14 quantitative (including four preference studies), one mixed methods and one narrative review.

      Conclusion

      There were only four preference studies, with the remaining 23 reporting on perceptions. Overall, there is a paucity of literature regarding patient preferences and perceptions of prostate cancer radiation therapy, particularly when considering how many clinical and technical studies are published in the area. This highlights opportunities for future research.

      Keywords

      Background

      Primary treatment for prostate cancer can include surgery (prostatectomy), hormones and radiation therapy, or a combination of these. Active surveillance is a further option for patients diagnosed with low-risk disease. The clinical efficacy and patient-reported outcomes of these primary treatments are well documented. [
      • Parker C.
      • Castro E.
      • Fizazi K.
      • Heidenreich A.
      • Ost P.
      • Procopio G.
      • et al.
      Prostate Cancer: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up†.
      ,

      Clinical Practice Guidelines : Evidence-Based Information and Recommendations for the Management of Localised Prostate Cancer.; 2002.

      ,
      • Heidenreich A.
      • Bastian P.J.
      • Bellmunt J.
      • Bolla M.
      • Joniau S.
      • van der Kwast T.
      • et al.
      EAU Guidelines on Prostate Cancer. Part 1: Screening, Diagnosis, and Local Treatment with Curative Intent—Update 2013.
      ,
      • Mohler J.L.
      • Antonarakis E.S.
      • Armstrong A.J.
      • et al.
      Prostate cancer, version 2.2019.
      ,
      • Moris L.
      • Cumberbatch M.G.
      • Van den Broeck T.
      • Gandaglia G.
      • Fossati N.
      • Kelly B.
      • et al.
      Benefits and Risks of Primary Treatments for High-risk Localized and Locally Advanced Prostate Cancer: An International Multidisciplinary Systematic Review[Formula presented].
      ,
      • Wallis C.J.D.
      • Zhao Z.
      • Huang L.-C.
      • Penson D.F.
      • Koyama T.
      • Kaplan S.H.
      • et al.
      Association of Treatment Modality, Functional Outcomes, and Baseline Characteristics With Treatment-Related Regret Among Men With Localized Prostate Cancer.
      ].
      The treatment options and pathway for each individual is negotiated between the patient and their health professional and is influenced by numerous factors. As reported in previous studies and systematic reviews, patients’ choices of primary treatment(s) are influenced by both health and non-health related factors. [
      • Showalter T.
      • Mishra M.
      • Bridges J.
      Factors that influence patient preferences for prostate cancer management options: a systematic review.
      ,
      • Robles L.A.
      • Chou S.
      • Cole O.
      • Hamid A.
      • Griffiths A.
      • Vedhara K.
      Factors Influencing Patients’ Treatment Selection for Localised Prostate Cancer: A Systematic Review.
      ,
      • Zeliadt S.B.
      • Ramsey S.D.
      • Penson D.F.
      • Hall I.J.
      • Ekwueme D.U.
      • Stroud L.
      • et al.
      Why do men choose one treatment over another?.
      ] Perceptions of efficacy, side effects and clinician recommendations influenced preference for primary treatment and management of localised prostate cancer. [
      • Showalter T.
      • Mishra M.
      • Bridges J.
      Factors that influence patient preferences for prostate cancer management options: a systematic review.
      ] Personal beliefs and the beliefs of others (such as clinicians, family and friends) about cancer, treatment efficacy and the severity of possible side effects have also been shown to influence treatment choice. [
      • Robles L.A.
      • Chou S.
      • Cole O.
      • Hamid A.
      • Griffiths A.
      • Vedhara K.
      Factors Influencing Patients’ Treatment Selection for Localised Prostate Cancer: A Systematic Review.
      ] Even though treatment efficacy and side effects are influential factors, it has been reported that there are large variations in how men considered the importance of these two factors in relation to their treatment choice. [
      • Zeliadt S.B.
      • Ramsey S.D.
      • Penson D.F.
      • Hall I.J.
      • Ekwueme D.U.
      • Stroud L.
      • et al.
      Why do men choose one treatment over another?.
      ] Systematic reviews on both decision aides and shared-decision making (SDM) demonstrate the complexity of the decision-making process following a prostate cancer diagnosis. [
      • Martínez-González N.A.
      • Plate A.
      • Markun S.
      • Senn O.
      • Rosemann T.
      • Neuner-Jehle S.
      Shared decision making for men facing prostate cancer treatment: A systematic review of randomized controlled trials.
      ,
      • Zhong W.
      • Smith B.
      • Haghighi K.
      • Mancuso P.
      Systematic Review of Decision Aids for the Management of Men With Localized Prostate Cancer.
      ,
      • Vromans R.D.
      • van Eenbergen M.C.
      • Pauws S.C.
      • Geleijnse G.
      • van der Poel H.G.
      • van de Poll-Franse L.V.
      • et al.
      Communicative aspects of decision aids for localized prostate cancer treatment – A systematic review.
      ] The existing systematic reviews on patient perceptions and preferences regarding prostate cancer radiation therapy treatment focus solely on the primary treatment choice, rather than the more nuanced aspects of radiation therapy. [
      • Showalter T.
      • Mishra M.
      • Bridges J.
      Factors that influence patient preferences for prostate cancer management options: a systematic review.
      ,
      • Robles L.A.
      • Chou S.
      • Cole O.
      • Hamid A.
      • Griffiths A.
      • Vedhara K.
      Factors Influencing Patients’ Treatment Selection for Localised Prostate Cancer: A Systematic Review.
      ,
      • Zeliadt S.B.
      • Ramsey S.D.
      • Penson D.F.
      • Hall I.J.
      • Ekwueme D.U.
      • Stroud L.
      • et al.
      Why do men choose one treatment over another?.
      ].
      Choosing primary treatment is one of the most significant decisions for a patient with prostate cancer. However, it is just one of many decisions and experiences in the prostate cancer treatment pathway. Even when a patient chooses radiation therapy as their primary treatment, there are a number of aspects to the delivery of care where patient perception and preference are important. The radiation therapy treatment pathway is defined by three distinct phases: pre-treatment preparation, treatment and follow-up post-treatment. Pre-treatment preparation includes information needs, shared decision making and preparatory procedures such as fiducial marker insertion for image guidance. Treatment may include daily treatment preparation (such as bowel/bladder filling protocols) and fractionation schedules. Post-treatment follow-up may include decisions about who provides follow-up care (e.g. nurse or radiation therapist-led models), frequency of follow-up appointments and survivorship aspects. While most active decision-making occurs when choosing primary treatment, there are various points during the three following phases where patients have choices: for example, an individual may choose not to have fiducial markers inserted, a radiation oncologist may give the patient a choice on the fractionation schedule or a choice between in-person or telehealth follow-up appointments).
      Our scoping review aims to answer the following question, “What is known about patients’ perceptions of prostate cancer radiation therapy from preparation to treatment and follow-up?.” This review seeks to identify patient perception and preference knowledge gaps so that future research can be undertaken to inform prostate cancer radiation therapy service delivery.

      Methods

      A scoping review, with supporting protocol, [

      Brown A, Yim J, Jones S, et al. Scoping Review Protocol - Men’s perceptions regarding prostate cancer radiation therapy. figshare. Published online 2021. doi:https://doi.org/10.6084/m9.figshare.17126813.v2.

      ] was conducted as per JBI methodology. [

      M. Peters C. Godfrey P. McInerney Z. Munn A. Trico H. Khalil E. Aromataris Z. Munn JBI Manual for Evidence Synthesis JBI.

      ] The review question was developed using the Participants, Concept and Context (PCC) framework (Table 1). [

      M. Peters C. Godfrey P. McInerney Z. Munn A. Trico H. Khalil E. Aromataris Z. Munn JBI Manual for Evidence Synthesis JBI.

      ] Eligible sources included peer-reviewed studies, theses and grey literature such as professional guidelines. Inclusion and exclusion criteria are outlined in Table 1.
      Table 1Participants, Concept and Context of Scoping Review; with Inclusion and Exclusion Criteria.
      Scoping ReviewInclusionExclusion
      ParticipantsMen / Individuals with or who have had prostate cancer
      • Prostate cancer patients’ perceptions OR general population hypothetical perceptions (e.g. preferences) relevant to prostate cancer
      • Perceptions relevant to any stage and aspect of prostate cancer radiation therapy, including pre-treatment preparation, treatment, and follow-up aspects
        • o
          Post-prostatectomy evidence included providing focus is on radiation therapy treatment
      • Original research (including systematic literature review)
      • Comparisons/Contrasts of primary treatments (e.g. surgery versus radiation therapy)
      • No clear indication of prostate cancer sub-population (i.e. general oncology perceptions)
      • Perceptions of carers, families, or other proxies (with no report of patient perceptions)
      • Perceptions of health professionals (with no report of patient perceptions)
      • Opinion pieces/editorials
      • Language other than English
      ConceptPerceptions – including experiences and preferences

      May include, but not limited to:

      1. Pre-treatment preparation specifics such as information provision or needs

      2. Treatment specifics such as side effects, fractionation schedules, image-guidance etc

      3. Follow Up such as nurse or radiation therapist-led post treatment reviews; frequency of follow up; survivorship requirements
      ContextProstate cancer radiation therapy

      Search Strategy, Sources and Screening

      Electronic databases of PubMed, CINAHL, Scopus and Science Direct were searched using combinations, synonyms and truncations of the following key search terms: “prostate cancer,” “radiotherapy,” “radiation therapy,” “radiation oncology,” “patient preferences,” “patient perceptions” and “patient experience” (

      Wallace BC, Small K, Brodley CE, Lau J, Trikalinos TA. Deploying an interactive machine learning system in an evidence-based practice center. In: Proceedings of the 2nd ACM SIGHIT Symposium on International Health Informatics - IHI ’12. ACM Press; 2012:819. doi:10.1145/2110363.2110464.

      ). Grey literature sources and government, policy and college websites (including the American Society for Radiation Oncology (ASTRO), the European Society for Radiation Oncology (ESTRO), and the Royal Australian and New Zealand College of Radiologists (RANZCR)) were also searched. No date limits were applied.
      Each title and abstract were screened independently by two reviewers (AB, and SJ or JY) for eligibility in abstrackr. [

      Wallace BC, Small K, Brodley CE, Lau J, Trikalinos TA. Deploying an interactive machine learning system in an evidence-based practice center. In: Proceedings of the 2nd ACM SIGHIT Symposium on International Health Informatics - IHI ’12. ACM Press; 2012:819. doi:10.1145/2110363.2110464.

      ] Full-text review was undertaken by two reviewers (AB, and SJ or JY) of all eligible studies, with any uncertainty discussed with the third reviewer until consensus was reached.

      Data extraction

      A data extraction form was initially developed and tested on 3 studies, with all co-authors agreeing on the data inclusion. Data from all eligible studies were extracted by one author (AB) and verified by at least one other author (SJ or JY). Data extraction included: year of publication, country, major theme addressed, stage of radiation therapy described/studied (pre-treatment, during treatment, post-treatment pathway), aim/s, population and sample size, key findings, and limitations and/or biases presented in the record. The results are presented grouped by major theme, across the treatment pathways.

      Results

      After removing duplicates, the initial search yielded 779 records with 727 excluded after title and abstract screening. No records were included from the grey literature. One record eligible in title/abstract screening could not be retrieved as it did not have an English translation. Of the 51 full-text records assessed, a total of 27 studies covering 25 study populations were eligible and were included in this review. Reasons for exclusion are detailed in the PRISMA flow diagram (Fig. 1).
      Figure thumbnail gr1
      Fig. 1PRISMA flow diagram; PCa: Prostate cancer; RT: Radiation therapy.
      The data extraction is presented in Table 2, grouped according to theme. The broad themes of information needs (n = 3) [
      • Chen H.
      • Twiddy M.
      • Jones L.
      • Johnson M.J.
      The unique information and communication needs of men affected by prostate cancer: A qualitative study of men’s experience.
      ,
      • Gordon L.
      • Dickinson A.
      • Offredy M.
      Information in radiotherapy for men with localised prostate cancer: An integrative review.
      ,
      • Thavarajah N.
      • McGuffin M.
      • Di Prospero L.
      • Fitch M.
      • Harth T.
      • Feldman-Stewart D.
      • et al.
      Empowering Patients through Education: Exploring Patients’ Needs about Postoperative Radiation Therapy for Prostate Cancer at the Sunnybrook Odette Cancer Centre.
      ] preferences and decisions (n = 6) [
      • Stalmeier P.F.M.
      • van Tol-Geerdink J.J.
      • van Lin E.N.J.T.
      • Schimmel E.
      • Huizenga H.
      • van Daal W.A.J.
      • et al.
      Doctors’ and patients’ preferences for participation and treatment in curative prostate cancer radiotherapy.
      ,
      • Sigurdson S.
      • Harrison M.
      • Pearce A.
      • Richardson H.
      • Zaza K.
      • Brundage M.
      One Fraction Size Does Not Fit All: Patient Preferences for Hypofractionated Radiation Therapy From a Discrete Choice Experiment.
      ,
      • Brown A.
      • Pain T.
      • Tan A.
      • Anable L.
      • Callander E.
      • Watt K.
      • et al.
      Men’s preferences for image-guidance in prostate radiation therapy: A discrete choice experiment.
      ,

      M.V. Mishra W.M. Thayer E. Janssen B. Hoppe C. Eggleston J.F.P. Bridges et al. Patient preferences for reducing bowel adverse events following prostate radiotherapy PLoS ONE 15 7 e0235616.

      ,

      T. Eade A. Kneebone G. Hruby J. Booth E. Hsiao A. Le et al. Early Outcomes and Decision Regret Using PSMA/MRI-Guided Focal Boost for Prostate Cancer SBRT Practical Radiation Oncology 12 3 2022 e201 e6.

      ,
      • King M.T.
      • Viney R.
      • Smith D.P.
      • Hossain I.
      • Street D.
      • Savage E.
      • et al.
      Survival gains needed to offset persistent adverse treatment effects in localised prostate cancer.
      ] general experiences (n = 8) [
      • Brown A.
      • Pain T.
      • Preston R.
      Patient perceptions and preferences about prostate fiducial markers and ultrasound motion monitoring procedures in radiation therapy treatment.
      ,
      • Foley K.A.
      • Groome P.A.
      • Feldman-Stewart D.
      • Brundage M.D.
      • Foley J.H.
      • McArdle S.
      • et al.
      Measuring the Quality of Personal Care in Patients Undergoing Radiotherapy for Prostate Cancer.
      ,
      • Renzi C.
      • Fioretti C.
      • Oliveri S.
      • Mazzocco K.
      • Zerini D.
      • Alessandro O.
      • et al.
      A qualitative investigation on patient empowerment in prostate cancer.
      ,
      • Hruby G.
      • Chen J.Y.
      • Bucci J.
      • Loadsman J.A.
      • Perry P.
      • Stockler M.R.
      Patients’ experiences of high-dose-rate brachytherapy boost for prostate cancer using an inpatient protocol.
      ,
      • Shaverdian N.
      • Verruttipong D.
      • Wang P.-C.
      • Kishan A.U.
      • Demanes D.J.
      • McCloskey S.
      • et al.
      Exploring Value From the Patient’s Perspective Between Modern Radiation Therapy Modalities for Localized Prostate Cancer.
      ,
      • Hackshaw-McGeagh L.E.
      • Sutton E.
      • Persad R.
      • Aning J.
      • Bahl A.
      • Koupparis A.
      • et al.
      Acceptability of dietary and physical activity lifestyle modification for men following radiotherapy or radical prostatectomy for localised prostate cancer: a qualitative investigation.
      ,
      • Appleton L.
      • Wyatt D.
      • Perkins E.
      • Parker C.
      • Crane J.
      • Jones A.
      • et al.
      The impact of prostate cancer on men’s everyday life.
      ,
      • Dieperink K.B.B.
      • Wagner L.
      • Hansen S.
      • Hansen O.
      Embracing life after prostate cancer. A male perspective on treatment and rehabilitation.
      ] side effects (n = 6) [
      • Devlin E.J.
      • Whitford H.S.
      • Denson L.A.
      • Potter A.E.
      “Just As I Expected”: A Longitudinal Cohort Study of the Impact of Response Expectancies on Side Effect Experiences During Radiotherapy for Prostate Cancer.
      ,
      • Hälleberg Nyman M.
      • Frank C.
      • Langius-Eklöf A.
      • Blomberg K.
      • Sundberg K.
      • Wengström Y.
      Patients’ Perspective on Participation in Care With or Without the Support of a Smartphone App During Radiotherapy for Prostate Cancer: Qualitative Study.
      ,
      • Blomberg K.
      • Wengström Y.
      • Sundberg K.
      • Browall M.
      • Isaksson A.-K.
      • Nyman M.H.
      • et al.
      Symptoms and self-care strategies during and six months after radiotherapy for prostate cancer – Scoping the perspectives of patients, professionals and literature.
      ,
      • Kinnaird W.
      • Stewart-Lord A.
      A qualitative study exploring men’s experience of sexual dysfunction as a result of radiotherapy and androgen deprivation therapy to treat prostate cancer.
      ,
      • Schultze M.
      • Müller-Nordhorn J.
      • Holmberg C.
      • Müller-Nordhorn J.
      • Holmberg C.
      Discussing the effects of prostate cancer beyond biographical disruption and new normalcy: the experiences of men with prostate cancer in Germany.
      ,
      • Dyer A.
      • Kirby M.
      • White I.D.
      • Cooper A.M.
      • Id w, am c.
      Management of erectile dysfunction after prostate cancer treatment: cross-sectional surveys of the perceptions and experiences of patients and healthcare professionals in the UK.
      ] and support (n = 4) [
      • Foley K.A.
      • Feldman-Stewart D.
      • Groome P.A.
      • Brundage M.D.
      • McArdle S.
      • Wallace D.
      • et al.
      What Aspects of Personal Care Are Most Important to Patients Undergoing Radiation Therapy for Prostate Cancer?.
      ,
      • Clarke H.
      • Burke G.
      A survey of prostate cancer patients’ perceptions of the support they receive during radical radiotherapy: is there room for improvement?.
      ,
      • Ormerod A.M.
      • Jessop A.J.
      An evaluation of support of patients with prostate cancer during and beyond radiotherapy treatment. A local perspective on future provision.
      ,

      M.J. Johnson C. Huang H. Chen L. Jones M. Twiddy Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers bmjspcare-2021-003438.

      ] are detailed in a matrix mapping the themes of each pathway (Fig. 2) . Collectively, the three major stages of the prostate cancer pathway were described, with four addressing pre-treatment aspects; [
      • Chen H.
      • Twiddy M.
      • Jones L.
      • Johnson M.J.
      The unique information and communication needs of men affected by prostate cancer: A qualitative study of men’s experience.
      ,
      • Gordon L.
      • Dickinson A.
      • Offredy M.
      Information in radiotherapy for men with localised prostate cancer: An integrative review.
      ,
      • Thavarajah N.
      • McGuffin M.
      • Di Prospero L.
      • Fitch M.
      • Harth T.
      • Feldman-Stewart D.
      • et al.
      Empowering Patients through Education: Exploring Patients’ Needs about Postoperative Radiation Therapy for Prostate Cancer at the Sunnybrook Odette Cancer Centre.
      ,
      • Stalmeier P.F.M.
      • van Tol-Geerdink J.J.
      • van Lin E.N.J.T.
      • Schimmel E.
      • Huizenga H.
      • van Daal W.A.J.
      • et al.
      Doctors’ and patients’ preferences for participation and treatment in curative prostate cancer radiotherapy.
      ] 13 addressing during-treatment aspects; [
      • Sigurdson S.
      • Harrison M.
      • Pearce A.
      • Richardson H.
      • Zaza K.
      • Brundage M.
      One Fraction Size Does Not Fit All: Patient Preferences for Hypofractionated Radiation Therapy From a Discrete Choice Experiment.
      ,
      • Brown A.
      • Pain T.
      • Tan A.
      • Anable L.
      • Callander E.
      • Watt K.
      • et al.
      Men’s preferences for image-guidance in prostate radiation therapy: A discrete choice experiment.
      ,

      M.V. Mishra W.M. Thayer E. Janssen B. Hoppe C. Eggleston J.F.P. Bridges et al. Patient preferences for reducing bowel adverse events following prostate radiotherapy PLoS ONE 15 7 e0235616.

      ,
      • Brown A.
      • Pain T.
      • Preston R.
      Patient perceptions and preferences about prostate fiducial markers and ultrasound motion monitoring procedures in radiation therapy treatment.
      ,
      • Foley K.A.
      • Groome P.A.
      • Feldman-Stewart D.
      • Brundage M.D.
      • Foley J.H.
      • McArdle S.
      • et al.
      Measuring the Quality of Personal Care in Patients Undergoing Radiotherapy for Prostate Cancer.
      ,
      • Renzi C.
      • Fioretti C.
      • Oliveri S.
      • Mazzocco K.
      • Zerini D.
      • Alessandro O.
      • et al.
      A qualitative investigation on patient empowerment in prostate cancer.
      ,
      • Hruby G.
      • Chen J.Y.
      • Bucci J.
      • Loadsman J.A.
      • Perry P.
      • Stockler M.R.
      Patients’ experiences of high-dose-rate brachytherapy boost for prostate cancer using an inpatient protocol.
      ,
      • Devlin E.J.
      • Whitford H.S.
      • Denson L.A.
      • Potter A.E.
      “Just As I Expected”: A Longitudinal Cohort Study of the Impact of Response Expectancies on Side Effect Experiences During Radiotherapy for Prostate Cancer.
      ,
      • Hälleberg Nyman M.
      • Frank C.
      • Langius-Eklöf A.
      • Blomberg K.
      • Sundberg K.
      • Wengström Y.
      Patients’ Perspective on Participation in Care With or Without the Support of a Smartphone App During Radiotherapy for Prostate Cancer: Qualitative Study.
      ,
      • Blomberg K.
      • Wengström Y.
      • Sundberg K.
      • Browall M.
      • Isaksson A.-K.
      • Nyman M.H.
      • et al.
      Symptoms and self-care strategies during and six months after radiotherapy for prostate cancer – Scoping the perspectives of patients, professionals and literature.
      ,
      • Foley K.A.
      • Feldman-Stewart D.
      • Groome P.A.
      • Brundage M.D.
      • McArdle S.
      • Wallace D.
      • et al.
      What Aspects of Personal Care Are Most Important to Patients Undergoing Radiation Therapy for Prostate Cancer?.
      ,
      • Clarke H.
      • Burke G.
      A survey of prostate cancer patients’ perceptions of the support they receive during radical radiotherapy: is there room for improvement?.
      ,
      • Ormerod A.M.
      • Jessop A.J.
      An evaluation of support of patients with prostate cancer during and beyond radiotherapy treatment. A local perspective on future provision.
      ] and ten addressing post-treatment aspects. [

      T. Eade A. Kneebone G. Hruby J. Booth E. Hsiao A. Le et al. Early Outcomes and Decision Regret Using PSMA/MRI-Guided Focal Boost for Prostate Cancer SBRT Practical Radiation Oncology 12 3 2022 e201 e6.

      ,
      • King M.T.
      • Viney R.
      • Smith D.P.
      • Hossain I.
      • Street D.
      • Savage E.
      • et al.
      Survival gains needed to offset persistent adverse treatment effects in localised prostate cancer.
      ,
      • Hackshaw-McGeagh L.E.
      • Sutton E.
      • Persad R.
      • Aning J.
      • Bahl A.
      • Koupparis A.
      • et al.
      Acceptability of dietary and physical activity lifestyle modification for men following radiotherapy or radical prostatectomy for localised prostate cancer: a qualitative investigation.
      ,
      • Appleton L.
      • Wyatt D.
      • Perkins E.
      • Parker C.
      • Crane J.
      • Jones A.
      • et al.
      The impact of prostate cancer on men’s everyday life.
      ,
      • Dieperink K.B.B.
      • Wagner L.
      • Hansen S.
      • Hansen O.
      Embracing life after prostate cancer. A male perspective on treatment and rehabilitation.
      ,
      • Kinnaird W.
      • Stewart-Lord A.
      A qualitative study exploring men’s experience of sexual dysfunction as a result of radiotherapy and androgen deprivation therapy to treat prostate cancer.
      ,
      • Schultze M.
      • Müller-Nordhorn J.
      • Holmberg C.
      • Müller-Nordhorn J.
      • Holmberg C.
      Discussing the effects of prostate cancer beyond biographical disruption and new normalcy: the experiences of men with prostate cancer in Germany.
      ,
      • Dyer A.
      • Kirby M.
      • White I.D.
      • Cooper A.M.
      • Id w, am c.
      Management of erectile dysfunction after prostate cancer treatment: cross-sectional surveys of the perceptions and experiences of patients and healthcare professionals in the UK.
      ].
      Table 2Summary of included literature.






      Reference
      Country &

      Treatment Pathway Stage
      Aim/sPopulation and

      Sample Size
      MethodsKey FindingsConsiderations†
      Information Needs
      Chen et al (2021)
      • Chen H.
      • Twiddy M.
      • Jones L.
      • Johnson M.J.
      The unique information and communication needs of men affected by prostate cancer: A qualitative study of men’s experience.


      United Kingdom



      Pre-treatment
      To gain an understanding of men’s experience of and specific needs for information and communicationProstate cancer men in United Kingdom



      Interviews: 19 patients and 6 carers



      *Interviewees invited from survey population of Johnson et al (2021)

      Study Design: Qualitative descriptive



      Semi-structured interviews



      Framework analysis, with deductive and inductive approach
      Four themes emerged:

      Information gaps

      Professional communication skills

      Individualisation of information

      Alternative information sources



      These were important not just at time of making a treatment decision, but throughout the cancer journey – e.g. understanding side effects of radiation therapy and what to do about them – the “real-life” implications of treatment.
      Not clear how many participants had radiation – however the sampling frame indicates aiming for 3–4 patients.



      It is recognised that those who participated may be self-advocates and able to seek/engage with support
      Gordon et al (2019)
      • Gordon L.
      • Dickinson A.
      • Offredy M.
      Information in radiotherapy for men with localised prostate cancer: An integrative review.


      United Kingdom



      Pre-treatment
      To identify, synthesise and analyse literature reporting the experiences of men with PCa related to information in radiotherapy33 articles from 2000 to 2017 were identifiedStudy Design: Systematic literature review



      Quality assessment to assess validity and reliability



      Synthesis and thematic reporting
      Many articles included radiation therapy patients more broadly than only focusing on PCa.



      Themes identified

      information needs

      information regarding adverse effects

      information and time

      information preferences

      satisfaction with information related to radiotherapy

      patient experience related to radiotherapy information
      Many qualitative studies did not report on validity and reliability
      Thavaraiah et al (2015)
      • Thavarajah N.
      • McGuffin M.
      • Di Prospero L.
      • Fitch M.
      • Harth T.
      • Feldman-Stewart D.
      • et al.
      Empowering Patients through Education: Exploring Patients’ Needs about Postoperative Radiation Therapy for Prostate Cancer at the Sunnybrook Odette Cancer Centre.


      Canada



      Pre-treatment
      To investigate patient opinions about information that should be discussed/provided to patients requiring radiation therapy post- prostatectomy.New and follow-up patients who were referred for consultation



      N = 31

      78% accrual rate





      Time of Survey Completion (to RT):

      Prior: 10 (32.3%)

      During: 12 (38.7%)

      After: 9 (29.0%)
      Study Design: Quantitative



      Once-off survey



      Included domains of:

      understanding situation & diagnosis

      making a decision

      radiotherapy procedures

      potential benefits

      side effects

      supportive network during radiation therapy



      Likert-type scale rating importance, ranging from essential to avoid.
      Variability between respondents with every question essential to at least some patients, and majority of questions were rated as either essential or important. However, no domains were deemed essential by 100% of respondents.



      Generalisability as only one centre
      Preferences & Decisions
      Stalmeier et al (2007)
      • Stalmeier P.F.M.
      • van Tol-Geerdink J.J.
      • van Lin E.N.J.T.
      • Schimmel E.
      • Huizenga H.
      • van Daal W.A.J.
      • et al.
      Doctors’ and patients’ preferences for participation and treatment in curative prostate cancer radiotherapy.


      Netherlands



      Pre-treatment
      To evaluate if radiation oncologists know what patient preferences are regarding two radiation dose options150 patients from two different centres scheduled to undergo RT



      (50 did not consent)
      Study Design: Qualitative



      Interview with Decision Aid (on 2nd visit to clinic having been provided with general radiation therapy information on 1st visit), with preferred treatment followed up by telephone 2 days later. Patients also indicated their decision-making preference. Choice between two radiation doses of 70 Gy or 74 Gy (trade-off between disease-free survival and adverse side effects).



      Compared to radiation oncologist’s substitute preferences, gauged at first clinic.



      Analysis: K statistic for agreement, with bivariate and multivariate analysis
      79% of patients preferred an active participation role.

      71% of patients favoured the less toxic treatment, whereas the radiation oncologist predicted only 51%.

      Overall agreement was 60% (k = 0.20)

      31 patients did not want to choose, and 25 ROs did not provide substitute treatment preferences



      Agreement between patient preference and radiation oncologist prediction improved when patient was more hopeful and with RO experience
      Sigurdson et al (2022)
      • Sigurdson S.
      • Harrison M.
      • Pearce A.
      • Richardson H.
      • Zaza K.
      • Brundage M.
      One Fraction Size Does Not Fit All: Patient Preferences for Hypofractionated Radiation Therapy From a Discrete Choice Experiment.
      Canada



      During Treatment
      To quantify patient preferences for toxicity and convenience of regimens of EBRT, to contribute to clinician counselling of treatment options with PCa patientsProstate Cancer Patients who had either recently completed or were completing EBRT for PCa



      n = 58



      Study Design: Quantitative



      DCE – completed with interviewer

      12 choice tasks completed

      24 total choice sets

      Pilot: 6 patients



      Attributes/Levels:

      1. Length of EBRT: 2 weeks (5#) / 4 weeks (20#) / 8 weeks (40#)

      2. Marker implant Yes / No

      3. PSA recurrence risk: 6% / 12% / 18%

      4. Acute GI or GU toxicity risk: 20% / 35% / 50%

      5. Late GI or GU toxicity risk: 10% / 15% / 20%



      Analysis:

      Multinomial logit and Mixed multinomial logit

      Latent Class analysis
      Overall preference:

      • Lower recurrence risk

      • Lower side effects risk

      • No marker implantation

      • Shorter treatment time



      >70 years old preferred shorter EBRT



      Those living further away preferred shorter EBRT



      Reduction in risk of PSA recurrence – respondents more likely to be working



      Individuals were willing to increase length of EBRT to avoid fiducial markers and risk of worse efficacy or toxicity
      Status quo bias / cognitive discordance recognised – i.e. that patients may “defend” their own treatment experience, particularly as partway through (43.1%) or recently completed treatment (56.9%)
      Brown et al (2022)
      • Brown A.
      • Pain T.
      • Tan A.
      • Anable L.
      • Callander E.
      • Watt K.
      • et al.
      Men’s preferences for image-guidance in prostate radiation therapy: A discrete choice experiment.
      Australia



      During Treatment

      To elicit preferences of men for IGRT techniques used in prostate radiation therapy238 men with previous prostate cancer diagnosis

      240 men from general population
      Study Design: Quantitative



      DCE completed online or via paper



      Pilot: 27 men with PCa, 57 general population men



      Attributes/Levels:

      1. Pain: No Pain / Low / Medium / High / Worst

      2. Side Effects: Decreased / Same

      3. Accuracy: Same / Increased

      4. Additional Time: 5 / 15 / 30 min

      5. Additional Appointments: No / One / Two Appointments

      6. Cost: 0 / $50 / $150 / $2500



      Analysis:

      Multinomial logit modellingLatent Class Analysis

      (LCA)Marginal willingness to pay

      (mWTP)
      Overall preference:

      • Less cost

      • Less pain

      • Improved accuracy



      PCa men valued accuracy more than general population



      PCa patients willing to pay more to avoid the worst pain than the general population, and willing to pay more for increased accuracy



      3 sub-groups identified in LCA, concerned with:

      1: Process-related attributes of pain, cost, as well as side effects

      2. Process-related attributes of pain, cost as well as additional appointments

      3. Clinical efficacy attributes of accuracy and side effects.
      Different demographic characteristics between the two cohorts – differences between preferences of two cohorts must be interpreted with this in mind
      Mishra et al (2020)

      M.V. Mishra W.M. Thayer E. Janssen B. Hoppe C. Eggleston J.F.P. Bridges et al. Patient preferences for reducing bowel adverse events following prostate radiotherapy PLoS ONE 15 7 e0235616.

      USA



      During Treatment
      Determined which bowel side effects prostate cancer patients find to be most impactful174 PCa respondents – varied primary treatments



      EBRT: 81

      ADT: 53

      Proton: 51

      Prostatectomy: 27

      Brachytherapy: 24

      AS: 15



      Recruited from 2 institutions
      Study Design: Quantitative



      Best-Worst scaling



      Orthogonal design – 18 tasks

      Attributes (with Levels of Moderate, Small and Very small for all)

      :

      • Urgency

      • Pain

      • Control

      • Bloody stools

      • Frequency



      Attributes/levels based on bowel subscale of the EPIC-26 short-form
      Most bothersome: Control

      Least bothersome: Frequency



      Proposed attribute bother weights:

      • Urgency 20.8%

      • Pain 18.7%

      • Control 29.5%

      • Bloody stools 17.6%

      • Frequency 13.4%
      Demographics reporting was voluntary therefore a lot of missing data.



      Preference heterogeneity may be lacking as predominately Caucasian respondents



      Only 12 from one site, compared to 169 from other site.
      Eade et al (2021)

      T. Eade A. Kneebone G. Hruby J. Booth E. Hsiao A. Le et al. Early Outcomes and Decision Regret Using PSMA/MRI-Guided Focal Boost for Prostate Cancer SBRT Practical Radiation Oncology 12 3 2022 e201 e6.

      Australia



      Post Treatment
      To evaluate patient’s treatment decision and decision regret in stereotactic body radiation therapy (SBRT)112 out of 120 eligible patients consented and completed the survey



      Recruited from two centres, however treated under the same radiation oncologists
      Study Design: Quantitative



      Survey – patient reported outcome measures

      Treatment decision: How much did the option of having 5 stereotactic treatments (as compared to 20 to 40 visits of standard radiation) influence your decision to receive radiation treatment for your prostate cancer?

      Decision regret: Do you regret the choice of treatment (5 fraction stereotactic radiotherapy) for your prostate cancer compared to other treatment options?
      74% reported the SBRT regime was a significant factor in their decision making.



      Decision regret associated with toxicity, particularly urinary bother



      5 patients (4%) reported “quite a lot” of regret. 1 patient had biochemical control and no reported bother (bowel, bladder or sexual) – appeared to regret not having surgery.
      Note: this article also evaluates treatment outcomes not presented here.

      An

      aim was not specified in the article.
      King et al (2012)
      • King M.T.
      • Viney R.
      • Smith D.P.
      • Hossain I.
      • Street D.
      • Savage E.
      • et al.
      Survival gains needed to offset persistent adverse treatment effects in localised prostate cancer.
      Australia



      Post Treatment
      To quantify the patient preferences of relative tolerability of adverse side effects or survival gains needed to make side effects worthwhile in the treatment of localised prostate cancer422 total

      Active surveillance (n = 64)

      Radical prostatectomy (n = 66)

      External beam radiotherapy (EBRT) (n = 29)

      Androgen deprivation therapy (ADT) (n = 31)

      EBRT + ADT (n = 37)

      LDR brachytherapy (n = 63)

      HDR brachytherapy (n = 66)

      Controls without PCa (n = 65)
      Study Design: Quantitative



      Discrete choice experiment, with survival gains needed to justify persistent side effects estimated.



      Attributes: (Levels: No, Mild, Severe)

      Erectile dysfunction

      Loss of libido

      Urinary leakage

      Urinary blockage

      Bowel symptoms

      Fatigue

      Hormonal effects
      Median survival benefit in months (with 2.5–97.5 percentiles):

      Severe erectile dysfunction: 4.0 (3.4, 4.6)

      Severe loss of libido: 5.0 (4.9, 5.2)

      Mild urinary leakage: 4.2 (4.1, 4.3)

      Severe urinary leakage: 27.7 (26.9, 28.5)

      Mild bowel problems: 6.2 (6.1, 6.4)



      Severe urinary and bowel symptoms were the least tolerable.



      Mild bowel problems were most prevalent after EBRT (30%)

      General Experiences
      Brown et al (2021)
      • Brown A.
      • Pain T.
      • Preston R.
      Patient perceptions and preferences about prostate fiducial markers and ultrasound motion monitoring procedures in radiation therapy treatment.




      Australia



      During Treatment

      Explored experiences and preferences of patients undergoing IGRT - both fiducial marker (FM) insertion and Clarity ultrasound (US) procedures.Prostate Cancer Patients from single centre



      Survey = 40

      Interviews = 22
      Study Design: Sequential explanatory mixed methods:

      • Quantitative Surveys

      • Qualitative Interviews



      Surveys – investigator-developed; descriptive analysis



      Interviews – semi-structured with thematic analysis
      Perceptions of invasiveness varied with 46% reporting FMs more invasive than US and 49% the same for the two procedures.

      Survey:

      • 46% FMs more invasive than US; 49% same invasiveness

      • Mean scores for pain, physical & psychological discomfort were higher for FMs, only pain achieved significance (P < 0.05).



      Three themes: Expectations versus Experience; Preferences linked to Priorities; and Motivations.

      Eleven patients

      (50%) preferred US; however, 10 (45%) could not illicit a preference.
      Generalisability as only one centre
      Foley et al (2018)
      • Foley K.A.
      • Groome P.A.
      • Feldman-Stewart D.
      • Brundage M.D.
      • Foley J.H.
      • McArdle S.
      • et al.
      Measuring the Quality of Personal Care in Patients Undergoing Radiotherapy for Prostate Cancer.
      To describe the quality of personal care delivered to patient PCa undergoing radiation therapy, to identify areas for improvementStudy Design: Quantitative

      Questionnaire as for Foley et al (2016)

      , this article reporting on how quality of care was perceived
      Top ranked elements included professionalism of ROs/RTs/Nurses to patients (including care, politeness, honesty and respect); knowledge of ROs/RTs, explaining and answering questions in a clear way, and taking the time to do so.



      Lowest ranked elements included:

      Environment and facilities such as waiting room, food/drink availability, parking etc; Additional information including second opinions and support groups
      Timing of questionnaires may reflect different timing in respondents’ trajectories



      Generalisability as only one centre
      Renzi et al (2017)
      • Renzi C.
      • Fioretti C.
      • Oliveri S.
      • Mazzocco K.
      • Zerini D.
      • Alessandro O.
      • et al.
      A qualitative investigation on patient empowerment in prostate cancer.
      Italy



      During Treatment



      Assessed the experiences of prostate cancer men during radiation therapy treatment, with a particular focus on patient empowerment.10 patients undergoing radiation therapy

      Radical: 3

      Adjuvant: 3

      Salvage: 4



      (21 patients in total approached)
      Study Design: Qualitative



      Semi-structured interviews, with thematic analysis



      Semi-structured interview guide was structured following explorative phase, examining department procedures/pathways and interpersonal dynamics experienced by the patients. 4 key theme areas identified: patient-healthcare providers’ communication, decision-making, needs, and resources.

      5/10 reported the possibility to share information and questions with at least one health care provider, and identified as having an active role in communication



      Burdens associated with radiation therapy were identified, including: travelling for treatment, being away from home, practical challenges with managing work around appointments, and preparation for radiation therapy including bladder and bowel.



      Resources which assisted included family and social support, economic resources, flexible appointment schedules around work commitments, supportive care including physiotherapists and case-managers.
      Generalisability as only one centre.

      While interviewing patients undergoing radiation therapy, a lot was focused on diagnosis or pre- prostatectomy stages.

      Hruby et al (2011)
      • Hruby G.
      • Chen J.Y.
      • Bucci J.
      • Loadsman J.A.
      • Perry P.
      • Stockler M.R.
      Patients’ experiences of high-dose-rate brachytherapy boost for prostate cancer using an inpatient protocol.
      Australia



      During Treatment
      To determine patient’s ratings of physical and psychological discomforts associated with the brachytherapy procedure58 men undergoing in-patient brachytherapy boostStudy Design: Quantitative



      Survey - adapted from a validated questionnaire for urodynamic and prostate biopsy



      “Prostate Brachytherapy Questionnaire” completed on consecutive days for 3 days during in-patient stay (during which, were bed-bound with brachytherapy template and catheter in place)



      “Being stuck in bed” and “discomfort” were rated as most troublesome.



      Actual experience was rated better than expected by 60% of respondents. “Fear of opening my bowels” was rated to be worse than expected.



      These findings contributed to a change in protocol of 2 fractions delivered over 2 weeks, without the need for in-patient stay
      Generalisability as only one centre
      Shaverdian et al (2017)
      • Shaverdian N.
      • Verruttipong D.
      • Wang P.-C.
      • Kishan A.U.
      • Demanes D.J.
      • McCloskey S.
      • et al.
      Exploring Value From the Patient’s Perspective Between Modern Radiation Therapy Modalities for Localized Prostate Cancer.
      USA



      Post Treatment

      Evaluation of treatment regret and patient perceptions of treatment experience between radiation modalities, including IMRT, SBRT and HDR.276 prostate cancer patients (329 approached, 86% response)

      (IMRT, n = 74; SBRT, n = 108; HDR, n = 94)



      Single institution



      Study Design: Quantitative



      Survey study, including domains of: treatment decision-making experience, original expectations of toxicities versus realities, and treatment decision regret



      Analysis: chi-square or Wilcoxon test for comparing toxicity expectation with experience
      87 % - fully informed about possible side effects



      Actual short term side effects less than originally anticipated:

      • IMRT: 56%

      • SBRT: 55%

      • HDR: 25%



      Actual long term side effects less than originally anticipated:

      • IMRT: 20%

      • SBRT: 43%

      • HDR: 10%



      Long term side effects significantly more than expected in HDR and IMRT: self-reported problems with urinary, bowel and sexual functions.



      Regret: 13% in total (19% IMRT, 18% HDR and 5% SBRT),
      A wide range of follow up: 12–93 months.



      Generalisability as only one centre
      Hackshaw-McGeagh et al (2017)
      • Hackshaw-McGeagh L.E.
      • Sutton E.
      • Persad R.
      • Aning J.
      • Bahl A.
      • Koupparis A.
      • et al.
      Acceptability of dietary and physical activity lifestyle modification for men following radiotherapy or radical prostatectomy for localised prostate cancer: a qualitative investigation.
      England



      Post Treatment
      To explore opinions, experiences and perceived acceptability of taking part in nutritional and physical activity interventions16 men with PCa (4: Radiation therapy; 12: Surgery)

      7 partners (4: Radiation therapy; 3: Surgery)





      Study Design: Qualitative



      Semi-structured interviews



      Thematic analysis



      6-month lifestyle intervention was described (30-min brisk walk, 5 days a week; and dietary changes or supplement).



      Motivation for change:

      Diagnosis shock led to many taking stock of current lifestyle

      Motivated to reduce mortality and suffering, not specifically improving health/wellbeing.



      Facilitators of change

      Family support

      Health gains and clinical advice

      Rationale for change

      Anticipated enjoyment of lifestyle



      Barriers to change

      Poor weather

      Urinary incontinence (more so for post-prostatectomy patients)

      Time pressure

      Overall health



      Research considerations including participation, group versus individual interventions, data collection methods including digital etc were also explored
      Appleton et al (2015)
      • Appleton L.
      • Wyatt D.
      • Perkins E.
      • Parker C.
      • Crane J.
      • Jones A.
      • et al.
      The impact of prostate cancer on men’s everyday life.
      United Kingdom



      Post Treatment
      To explore how men receiving radiation therapy for PCa managed; and what aided/hindered their ability to adjust throughout27 men in total



      n = 9 men prior to EBRT

      n = 8 men 6–8 months post EBRT

      n = 10 men 12–18 months post EBRT

      Study Design: Qualitative



      Grounded theory approach



      Semi-structured interview
      Themes:

      Pathway to diagnosis

      Diagnosis

      Impact of PCa and its treatment on daily life

      Living with PCa in the long term



      Painful biopsies were considered the worst part of the experience



      Radiation therapy preparation regimes caused discomfort and inconvenience.



      Side effects were often traded off against the benefits of radiation therapy

      Cross-sectional sample – may have been different views if longitudinal
      Dieperink et al (2013)
      • Dieperink K.B.B.
      • Wagner L.
      • Hansen S.
      • Hansen O.
      Embracing life after prostate cancer. A male perspective on treatment and rehabilitation.
      Denmark



      Post Treatment
      Exploration of experiences with radiation therapy and ADT, and participation in a rehabilitation programmeFocus Groups × 2



      Group 1 – spouse actively involved (n = 6 patients)



      Group 2 – alone (n = 7 patients)
      Study Design: Qualitative



      Rehab programme – 2 nursing counsel sessions; two sessions of physio within 6 months post treatment



      Analysis of FG data:

      Phenomenological approach, with descriptive and meaning condensation analysis.

      Influence on treatment on everyday life (including driving > 100 km per day for some)



      EBRT less complicated than expected. Handled mostly by themselves, but welcomed advice from health professionals. Rehabilitation was viewed as a way to return to normal life particularly after the months of treatment.



      Side effects – bother to bowel/bladder significantly decreased after EBRT



      “Accept things as they come” – particularly when told cured.



      Humour as coping strategy
      Side Effects
      Devlin et al (2019)
      • Devlin E.J.
      • Whitford H.S.
      • Denson L.A.
      • Potter A.E.
      “Just As I Expected”: A Longitudinal Cohort Study of the Impact of Response Expectancies on Side Effect Experiences During Radiotherapy for Prostate Cancer.
      Australia



      During Treatment
      To investigate the association between patient response expectancies of side effects and subsequent toxicity experienced after prostate radiation therapy.35 patients from two hospitalsStudy Design: Quantitative



      Completed pre-treatment expectations survey; and repeated survey at 2 to 7 weeks during treatment



      Assessed 18 treatment-related side effects, health and hormonal status, emotional state and coping style



      Hierarchical multiple linear regression analysis
      Men felt they had adequate information on side effects prior to commencing treatment

      Baseline expectancies predicted 6/18 toxicities at week 2

      Week 2 expectancies predicted 7/17 toxicities at week 7

      Sexual side effects expectancies had greater prediction, particularly “inability to reach orgasm”

      Some side effects were predicted and reported to occur at 2 weeks, prior to when medically expected, suggesting a psychological component
      Halleberg Nyman et al (2017)
      • Hälleberg Nyman M.
      • Frank C.
      • Langius-Eklöf A.
      • Blomberg K.
      • Sundberg K.
      • Wengström Y.
      Patients’ Perspective on Participation in Care With or Without the Support of a Smartphone App During Radiotherapy for Prostate Cancer: Qualitative Study.
      Sweden



      During Treatment

      Explored PCa patient’s perceptions of participation during radiation therapy, with or without a smartphone app to manage symptoms and give self-care advice.28 patients interviewed

      n = 17 app use group

      n = 11 standard care



      Two university hospitals (one rural, one suburban)



      n = 8 EBRT

      n = 20 Brachytherapy + EBRT
      Study Design: Qualitative



      Open-ended interviews



      Analysed: “directed qualitative content analysis” utilising a analysis scheme developed for an emergency context
      Four participation dimensions confirmed:

      • Mutual participation

      • Fight for participation

      • Requirement for participation

      •Participation in getting basic needs satisfied



      The app increased patient participation in their care in managing symptoms. It was seen as a point of contact, facilitating question/answers.



      Some participants reported frustration with unanswered questions, with radiation therapy staff only able to answer questions relating to radiation therapy rather than more broader questions around their illness or care.



      While the information received regarding radiation therapy was clear and provided in multiple forms, it was perceived that the health care staff set the conditions for when and how participation could take place.
      It is noted that “participation in their care” was a difficult concept for some men.
      Blomberg et al (2016)
      • Blomberg K.
      • Wengström Y.
      • Sundberg K.
      • Browall M.
      • Isaksson A.-K.
      • Nyman M.H.
      • et al.
      Symptoms and self-care strategies during and six months after radiotherapy for prostate cancer – Scoping the perspectives of patients, professionals and literature.
      Sweden



      During Treatment
      To map and describe the symptoms and self-care strategies of patients undergoing prostate cancer radiation therapy8 patients



      Recruited from a rural and urban centre



      3 individual interviews, 1 focus group with 5 participants
      Study Design: Qualitative

      Individual interviews

      (n = 3) and one focus group (n = 5)



      Open-ended question:

      “Can you describe your symptoms and concerns during and after radiotherapy?”

      Followed by questions about how they managed the symptoms they had, and how they felt about the support they had received.



      Qualitative content analysis



      Symptom categories identified: urinary symptoms, bowel problems, pain, sexual problems, fatigue, and anxiety, depression and cognitive impairment, and irregular symptoms (incl weight gain, numbness, sweating, swollen feet, shivers, cyanosis).



      Self-care strategies rarely described but two identified:

      Urinary urgency – empty bladder prior to leaving the house

      Fatigue – trying to remain active



      Uncertainty reported by patients from around waiting to see health professionals; incomplete or limited information received and feeling unsure of information received
      Sample size – although a breadth of EBRT modalities covered, and rural and urban centre included.



      Note: This was a mixed-methods study including professionals interviews and a scoping review, however the data extracted focuses solely on the patient qualitative interviews.
      Kinnaird and Stewart-Lord (2021)
      • Kinnaird W.
      • Stewart-Lord A.
      A qualitative study exploring men’s experience of sexual dysfunction as a result of radiotherapy and androgen deprivation therapy to treat prostate cancer.
      England



      Post Treatment
      To investigate men’s perceptions of sexual dysfunction caused by EBRT and ADT, and the impact of this on their life.8 patients who were 18–24 months post treatmentStudy Design: Qualitative



      Phenomenological study



      Semi-structured interviews



      Thematic analysis
      Three themes:

      Priorities when making treatment decisions – with a strong focus on survival rather than side effects

      Information and support received about sexual side effects

      Perceptions and experiences of sexual dysfunction
      Selection bias recognised as those participating willing to discuss a sensitive issue
      Schultze et al (2020)
      • Schultze M.
      • Müller-Nordhorn J.
      • Holmberg C.
      • Müller-Nordhorn J.
      • Holmberg C.
      Discussing the effects of prostate cancer beyond biographical disruption and new normalcy: the experiences of men with prostate cancer in Germany.
      Germany



      Post Treatment
      To capture the diverse range of experiences of having and having had prostate cancer



      Part of a larger project to add narratives to a website
      44 men



      Recruited from health centres, support groups and consumer organisations



      17 had radiation therapy and/or brachytherapy
      Study Design: Qualitative



      Narrative interviews



      Thematic analysis
      Life-disrupting side effects: urinary leakage, potency and libido loss



      Attributing losses to ageing and/or cancer – intertwining of ageing and cancer.
      Recognised that because interviews were also going to be used online, there may have been a more positive prognosis consented
      Dyer et al (2019)
      • Dyer A.
      • Kirby M.
      • White I.D.
      • Cooper A.M.
      • Id w, am c.
      Management of erectile dysfunction after prostate cancer treatment: cross-sectional surveys of the perceptions and experiences of patients and healthcare professionals in the UK.


      United Kingdom



      Post Treatment
      To explore how erectile dysfunction is experienced by patients, and assessed and managed.546 men, 137 (25%) received EBRTStudy Design: Quantitative



      Cross-sectional survey



      Recruited through Prostate Cancer UK’s communication channels



      Analysis: Proportions
      *Results presented here represent the radiation therapy + ADT cohort only:



      54% of men reported that no one asked about erections prior to treatment.



      74% of men reported information regarding potential erectile dysfunction was given



      41% reported not being offered treatment to help get or keep an erection
      Also included health professional perspective, not presented here



      Survey was co-produced with PCa patients



      Higher proportion of younger men than the prostate cancer population
      Support
      Foley et al (2016)
      • Foley K.A.
      • Feldman-Stewart D.
      • Groome P.A.
      • Brundage M.D.
      • McArdle S.
      • Wallace D.
      • et al.
      What Aspects of Personal Care Are Most Important to Patients Undergoing Radiation Therapy for Prostate Cancer?.
      Canada



      During Treatment

      To identify the elements of nontechnical (personal) care that are most important to prostate cancer radiation therapy patients108 patients undergoing prostate EBRT



      Exclusion: Nodes, prostatectomy or brachytherapy



      Inclusion: ADT
      Study Design: Quantitative



      Questionnaires developed via cognitive interviews with 8 patients and 4 health professionals



      Aspect of care:

      Patient centeredness

      Empathy and respectfulness of caregivers

      Perceived competence of caregivers

      Adequacy of information sharing

      Accessibility of caregivers

      Continuity of care

      Comprehensiveness of services

      Treatment environment

      Privacy

      Convenience
      Most important: perceived competence of their caregivers, the empathy and respectfulness of caregivers, and the adequacy of information sharing.



      Differences in patient’s different priorities were not predictable by age, education or health status.
      Timing of questionnaires may reflect different timing in respondents’ trajectories



      Generalisability as only one centre
      Clarke & Burke (2016)
      • Clarke H.
      • Burke G.
      A survey of prostate cancer patients’ perceptions of the support they receive during radical radiotherapy: is there room for improvement?.
      United Kingdom



      During Treatment
      To ascertain PCa patient perceptions of support received during radiotherapy treatment course13 patients, interviewed within last week of radiation therapy treatment (fractions 32 to 37)Study Design: Qualitative



      Qualitative phenomenological approach, with Giorgi analysis



      Qualitative interviews
      Quality of support overall positive.



      Many felt well supported during treatment sessions, not requiring additional on-treatment reviews



      Peer support found in the waiting room, building relationships with other men going through treatment.



      Mixed views regarding information and support prior to treatment commencement.



      Uncertainty around bladder and bowel preparation reported by 31% of participants. Requested to know why, not just instructions.
      Generalisability as only one centre.



      No patient demographics are reported.
      Ormerod & Jessop (2015)
      • Ormerod A.M.
      • Jessop A.J.
      An evaluation of support of patients with prostate cancer during and beyond radiotherapy treatment. A local perspective on future provision.
      UK



      During Treatment
      To evaluate if on-treatment review clinics were meeting patients needs during and at the completion of radiation therapy.7 prostate cancer patients

      Convenience sample of all PCa patients completing treatment within 1 month



      Study Design: Qualitative



      Phenomenology using semi-structured interviews
      Two main themes emerged:

      Information giving

      Clinical assessment of symptoms



      Information was important to patients, with some specifics reported:

      2/7 felt there had been information omissions at planning and treatment commencement, causing unnecessary anxiety

      However 6/7 were satisfied with information giving during and end of treatment

      2/7 did not understand purposes of daily imaging



      All patients reported being aware of possible side effects

      6/7 did not experience any that necessitated medication or required referral



      All patients’ priority at the end of treatment was “to know how it’s [the treatment] gone” with quality of life not commonly raised.
      Generalisability as only one centre



      Note: Two health professionals were also interviewed, however their specific insights are not included here
      Johnson et al (2021)

      M.J. Johnson C. Huang H. Chen L. Jones M. Twiddy Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers bmjspcare-2021-003438.

      United Kingdom



      Post Treatment

      To identify unmet supportive, palliative care and informational needs of people living with prostate cancer (patient and carers).Prostate cancer men in United Kingdom



      Survey: 216 men, 97 carers



      Previous treatment:

      ADT: 42%

      RT: 39%

      Surgery: 37%

      AS: 28%

      Chemotherapy: 9%

      Palliative care: 1%



      Interviews: 19 patients and 6 carers
      Study Design: Quantitative



      Survey including:

      Patient Supportive Care Needs Survey

      Carer Support Needs Assessment Tool

      Health Status (EQ-VAS)



      Free-text analysed thematically
      Patients:

      62% reported moderate-high needs

      Locally advanced/advanced cancer diagnoses were associated with higher unmet needs.



      Carers:

      Chronic illness significantly predicted supportive care needs.



      Free-text analysis:

      Poor communication led to frustration

      High burden of symptoms, particularly hormone therapy

      Symptoms were “inevitable, to be borne stoically”

      Busyness of hospitals meant person-centred care was not always delivered, with some poor coordination or management noted
      Cancer stage was self-reported, with 40.7% as “don’t know/not to say”
      including limitations or biases; Abbreviations: ADT: Androgen Deprivation Therapy; AS: Active Surveillance; DCE: Discrete Choice Experiment; EBRT: External Beam Radiation Therapy; GI: Gastrointestinal; GU: Genitourinary; HDR: High dose rate brachytherapy; IMRT: Intensity Modulate Radiation Therapy; LCA: Latent Class Analysis; LDR: Low dose rate brachytherapy; mWTP: Marginal Willingness to Pay; PCa: Prostate Cancer; RO: Radiation Oncologist; RT: Radiation Therapy; SBRT: Stereotactic Body Radiation Therapy.
      Figure thumbnail gr2
      Fig. 2Mapped matrix of major themes addressed across the treatment pathway continuum. Note: coloured squares indicate primary focus of the study, with coloured bordered squares indicating a secondary focus. Numbers denote the references.
      A range of methodologies were reported: 11 using qualitative methods, [
      • Chen H.
      • Twiddy M.
      • Jones L.
      • Johnson M.J.
      The unique information and communication needs of men affected by prostate cancer: A qualitative study of men’s experience.
      ,
      • Renzi C.
      • Fioretti C.
      • Oliveri S.
      • Mazzocco K.
      • Zerini D.
      • Alessandro O.
      • et al.
      A qualitative investigation on patient empowerment in prostate cancer.
      ,
      • Clarke H.
      • Burke G.
      A survey of prostate cancer patients’ perceptions of the support they receive during radical radiotherapy: is there room for improvement?.
      ,
      • Appleton L.
      • Wyatt D.
      • Perkins E.
      • Parker C.
      • Crane J.
      • Jones A.
      • et al.
      The impact of prostate cancer on men’s everyday life.
      ,
      • Dieperink K.B.B.
      • Wagner L.
      • Hansen S.
      • Hansen O.
      Embracing life after prostate cancer. A male perspective on treatment and rehabilitation.
      ,
      • Hälleberg Nyman M.
      • Frank C.
      • Langius-Eklöf A.
      • Blomberg K.
      • Sundberg K.
      • Wengström Y.
      Patients’ Perspective on Participation in Care With or Without the Support of a Smartphone App During Radiotherapy for Prostate Cancer: Qualitative Study.
      ,
      • Blomberg K.
      • Wengström Y.
      • Sundberg K.
      • Browall M.
      • Isaksson A.-K.
      • Nyman M.H.
      • et al.
      Symptoms and self-care strategies during and six months after radiotherapy for prostate cancer – Scoping the perspectives of patients, professionals and literature.
      ,
      • Kinnaird W.
      • Stewart-Lord A.
      A qualitative study exploring men’s experience of sexual dysfunction as a result of radiotherapy and androgen deprivation therapy to treat prostate cancer.
      ,
      • Schultze M.
      • Müller-Nordhorn J.
      • Holmberg C.
      • Müller-Nordhorn J.
      • Holmberg C.
      Discussing the effects of prostate cancer beyond biographical disruption and new normalcy: the experiences of men with prostate cancer in Germany.
      ] 14 using quantitative survey-based methods, [
      • Foley K.A.
      • Groome P.A.
      • Feldman-Stewart D.
      • Brundage M.D.
      • Foley J.H.
      • McArdle S.
      • et al.
      Measuring the Quality of Personal Care in Patients Undergoing Radiotherapy for Prostate Cancer.
      ,
      • Hruby G.
      • Chen J.Y.
      • Bucci J.
      • Loadsman J.A.
      • Perry P.
      • Stockler M.R.
      Patients’ experiences of high-dose-rate brachytherapy boost for prostate cancer using an inpatient protocol.
      ,
      • Shaverdian N.
      • Verruttipong D.
      • Wang P.-C.
      • Kishan A.U.
      • Demanes D.J.
      • McCloskey S.
      • et al.
      Exploring Value From the Patient’s Perspective Between Modern Radiation Therapy Modalities for Localized Prostate Cancer.
      ,
      • Devlin E.J.
      • Whitford H.S.
      • Denson L.A.
      • Potter A.E.
      “Just As I Expected”: A Longitudinal Cohort Study of the Impact of Response Expectancies on Side Effect Experiences During Radiotherapy for Prostate Cancer.
      ,
      • Dyer A.
      • Kirby M.
      • White I.D.
      • Cooper A.M.
      • Id w, am c.
      Management of erectile dysfunction after prostate cancer treatment: cross-sectional surveys of the perceptions and experiences of patients and healthcare professionals in the UK.
      ,
      • Foley K.A.
      • Feldman-Stewart D.
      • Groome P.A.
      • Brundage M.D.
      • McArdle S.
      • Wallace D.
      • et al.
      What Aspects of Personal Care Are Most Important to Patients Undergoing Radiation Therapy for Prostate Cancer?.
      ,
      • Stalmeier P.F.M.
      • van Tol-Geerdink J.J.
      • van Lin E.N.J.T.
      • Schimmel E.
      • Huizenga H.
      • van Daal W.A.J.
      • et al.
      Doctors’ and patients’ preferences for participation and treatment in curative prostate cancer radiotherapy.
      ,
      • Sigurdson S.
      • Harrison M.
      • Pearce A.
      • Richardson H.
      • Zaza K.
      • Brundage M.
      One Fraction Size Does Not Fit All: Patient Preferences for Hypofractionated Radiation Therapy From a Discrete Choice Experiment.
      ,
      • Brown A.
      • Pain T.
      • Tan A.
      • Anable L.
      • Callander E.
      • Watt K.
      • et al.
      Men’s preferences for image-guidance in prostate radiation therapy: A discrete choice experiment.
      ,

      M.V. Mishra W.M. Thayer E. Janssen B. Hoppe C. Eggleston J.F.P. Bridges et al. Patient preferences for reducing bowel adverse events following prostate radiotherapy PLoS ONE 15 7 e0235616.

      ,

      T. Eade A. Kneebone G. Hruby J. Booth E. Hsiao A. Le et al. Early Outcomes and Decision Regret Using PSMA/MRI-Guided Focal Boost for Prostate Cancer SBRT Practical Radiation Oncology 12 3 2022 e201 e6.

      ,
      • King M.T.
      • Viney R.
      • Smith D.P.
      • Hossain I.
      • Street D.
      • Savage E.
      • et al.
      Survival gains needed to offset persistent adverse treatment effects in localised prostate cancer.
      ] one mixed-methods study [
      • Brown A.
      • Pain T.
      • Preston R.
      Patient perceptions and preferences about prostate fiducial markers and ultrasound motion monitoring procedures in radiation therapy treatment.
      ] and one narrative review. [
      • Gordon L.
      • Dickinson A.
      • Offredy M.
      Information in radiotherapy for men with localised prostate cancer: An integrative review.
      ] Of the studies using quantitative methods four were preferences studies (including three discrete choice experiments and one best-worst scaling survey). [
      • Brown A.
      • Pain T.
      • Tan A.
      • Anable L.
      • Callander E.
      • Watt K.
      • et al.
      Men’s preferences for image-guidance in prostate radiation therapy: A discrete choice experiment.
      ,

      M.V. Mishra W.M. Thayer E. Janssen B. Hoppe C. Eggleston J.F.P. Bridges et al. Patient preferences for reducing bowel adverse events following prostate radiotherapy PLoS ONE 15 7 e0235616.

      ]
      Many studies included perspectives of men who underwent a range of treatments including surgery and hormonal therapy. The majority of studies involved men who underwent external beam radiation therapy to the intact prostate, [
      • Thavarajah N.
      • McGuffin M.
      • Di Prospero L.
      • Fitch M.
      • Harth T.
      • Feldman-Stewart D.
      • et al.
      Empowering Patients through Education: Exploring Patients’ Needs about Postoperative Radiation Therapy for Prostate Cancer at the Sunnybrook Odette Cancer Centre.
      ,
      • Stalmeier P.F.M.
      • van Tol-Geerdink J.J.
      • van Lin E.N.J.T.
      • Schimmel E.
      • Huizenga H.
      • van Daal W.A.J.
      • et al.
      Doctors’ and patients’ preferences for participation and treatment in curative prostate cancer radiotherapy.
      ,
      • Shaverdian N.
      • Verruttipong D.
      • Wang P.-C.
      • Kishan A.U.
      • Demanes D.J.
      • McCloskey S.
      • et al.
      Exploring Value From the Patient’s Perspective Between Modern Radiation Therapy Modalities for Localized Prostate Cancer.
      ,
      • Dieperink K.B.B.
      • Wagner L.
      • Hansen S.
      • Hansen O.
      Embracing life after prostate cancer. A male perspective on treatment and rehabilitation.
      ,
      • Blomberg K.
      • Wengström Y.
      • Sundberg K.
      • Browall M.
      • Isaksson A.-K.
      • Nyman M.H.
      • et al.
      Symptoms and self-care strategies during and six months after radiotherapy for prostate cancer – Scoping the perspectives of patients, professionals and literature.
      ,
      • Kinnaird W.
      • Stewart-Lord A.
      A qualitative study exploring men’s experience of sexual dysfunction as a result of radiotherapy and androgen deprivation therapy to treat prostate cancer.
      ,

      M.J. Johnson C. Huang H. Chen L. Jones M. Twiddy Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers bmjspcare-2021-003438.

      ] and three of these studies also investigated stereotactic body radiation therapy (SBRT) and/or hypofractionation. [
      • Stalmeier P.F.M.
      • van Tol-Geerdink J.J.
      • van Lin E.N.J.T.
      • Schimmel E.
      • Huizenga H.
      • van Daal W.A.J.
      • et al.
      Doctors’ and patients’ preferences for participation and treatment in curative prostate cancer radiotherapy.
      ,
      • Shaverdian N.
      • Verruttipong D.
      • Wang P.-C.
      • Kishan A.U.
      • Demanes D.J.
      • McCloskey S.
      • et al.
      Exploring Value From the Patient’s Perspective Between Modern Radiation Therapy Modalities for Localized Prostate Cancer.
      ,
      • Blomberg K.
      • Wengström Y.
      • Sundberg K.
      • Browall M.
      • Isaksson A.-K.
      • Nyman M.H.
      • et al.
      Symptoms and self-care strategies during and six months after radiotherapy for prostate cancer – Scoping the perspectives of patients, professionals and literature.
      ] Six of these studies included other modalities such as brachytherapy [
      • Thavarajah N.
      • McGuffin M.
      • Di Prospero L.
      • Fitch M.
      • Harth T.
      • Feldman-Stewart D.
      • et al.
      Empowering Patients through Education: Exploring Patients’ Needs about Postoperative Radiation Therapy for Prostate Cancer at the Sunnybrook Odette Cancer Centre.
      ,
      • Shaverdian N.
      • Verruttipong D.
      • Wang P.-C.
      • Kishan A.U.
      • Demanes D.J.
      • McCloskey S.
      • et al.
      Exploring Value From the Patient’s Perspective Between Modern Radiation Therapy Modalities for Localized Prostate Cancer.
      ,
      • Dieperink K.B.B.
      • Wagner L.
      • Hansen S.
      • Hansen O.
      Embracing life after prostate cancer. A male perspective on treatment and rehabilitation.
      ,
      • Kinnaird W.
      • Stewart-Lord A.
      A qualitative study exploring men’s experience of sexual dysfunction as a result of radiotherapy and androgen deprivation therapy to treat prostate cancer.
      ,

      M.J. Johnson C. Huang H. Chen L. Jones M. Twiddy Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers bmjspcare-2021-003438.

      ] and one also included proton therapy. [
      • Shaverdian N.
      • Verruttipong D.
      • Wang P.-C.
      • Kishan A.U.
      • Demanes D.J.
      • McCloskey S.
      • et al.
      Exploring Value From the Patient’s Perspective Between Modern Radiation Therapy Modalities for Localized Prostate Cancer.
      ] One study focused on radiation therapy in the post-prostatectomy setting. [
      • Shaverdian N.
      • Verruttipong D.
      • Wang P.-C.
      • Kishan A.U.
      • Demanes D.J.
      • McCloskey S.
      • et al.
      Exploring Value From the Patient’s Perspective Between Modern Radiation Therapy Modalities for Localized Prostate Cancer.
      ] A number of studies included a range of treatments/modalities. [
      • Thavarajah N.
      • McGuffin M.
      • Di Prospero L.
      • Fitch M.
      • Harth T.
      • Feldman-Stewart D.
      • et al.
      Empowering Patients through Education: Exploring Patients’ Needs about Postoperative Radiation Therapy for Prostate Cancer at the Sunnybrook Odette Cancer Centre.
      ,
      • Renzi C.
      • Fioretti C.
      • Oliveri S.
      • Mazzocco K.
      • Zerini D.
      • Alessandro O.
      • et al.
      A qualitative investigation on patient empowerment in prostate cancer.
      ,
      • Shaverdian N.
      • Verruttipong D.
      • Wang P.-C.
      • Kishan A.U.
      • Demanes D.J.
      • McCloskey S.
      • et al.
      Exploring Value From the Patient’s Perspective Between Modern Radiation Therapy Modalities for Localized Prostate Cancer.
      ,
      • Devlin E.J.
      • Whitford H.S.
      • Denson L.A.
      • Potter A.E.
      “Just As I Expected”: A Longitudinal Cohort Study of the Impact of Response Expectancies on Side Effect Experiences During Radiotherapy for Prostate Cancer.
      ] The complete details of treatment regimens were not specified [
      • Devlin E.J.
      • Whitford H.S.
      • Denson L.A.
      • Potter A.E.
      “Just As I Expected”: A Longitudinal Cohort Study of the Impact of Response Expectancies on Side Effect Experiences During Radiotherapy for Prostate Cancer.
      ] or were unclear in some studies, [
      • Thavarajah N.
      • McGuffin M.
      • Di Prospero L.
      • Fitch M.
      • Harth T.
      • Feldman-Stewart D.
      • et al.
      Empowering Patients through Education: Exploring Patients’ Needs about Postoperative Radiation Therapy for Prostate Cancer at the Sunnybrook Odette Cancer Centre.
      ,
      • Renzi C.
      • Fioretti C.
      • Oliveri S.
      • Mazzocco K.
      • Zerini D.
      • Alessandro O.
      • et al.
      A qualitative investigation on patient empowerment in prostate cancer.
      ] usually when different treatment modalities were undertaken.
      One study reported in two manuscripts included the perspective of the carer in addition to the patient, [
      • Chen H.
      • Twiddy M.
      • Jones L.
      • Johnson M.J.
      The unique information and communication needs of men affected by prostate cancer: A qualitative study of men’s experience.
      ,

      M.J. Johnson C. Huang H. Chen L. Jones M. Twiddy Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers bmjspcare-2021-003438.

      ] and another included patients’ partners at the patient’s invitation. [
      • Hackshaw-McGeagh L.E.
      • Sutton E.
      • Persad R.
      • Aning J.
      • Bahl A.
      • Koupparis A.
      • et al.
      Acceptability of dietary and physical activity lifestyle modification for men following radiotherapy or radical prostatectomy for localised prostate cancer: a qualitative investigation.
      ] Two studies each resulted in two separate records: Foley et al (2016, 2018) reported on 108 patients undergoing radiation therapy in Canada; [
      • Foley K.A.
      • Groome P.A.
      • Feldman-Stewart D.
      • Brundage M.D.
      • Foley J.H.
      • McArdle S.
      • et al.
      Measuring the Quality of Personal Care in Patients Undergoing Radiotherapy for Prostate Cancer.
      ,
      • Foley K.A.
      • Feldman-Stewart D.
      • Groome P.A.
      • Brundage M.D.
      • McArdle S.
      • Wallace D.
      • et al.
      What Aspects of Personal Care Are Most Important to Patients Undergoing Radiation Therapy for Prostate Cancer?.
      ] and Johnson et al (2021) and Chen et al (2021) reported on 216 men and 97 carers in the United Kingdom, [

      M.J. Johnson C. Huang H. Chen L. Jones M. Twiddy Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers bmjspcare-2021-003438.

      ] with a subset of 19 men and 6 carers interviewed. [
      • Chen H.
      • Twiddy M.
      • Jones L.
      • Johnson M.J.
      The unique information and communication needs of men affected by prostate cancer: A qualitative study of men’s experience.
      ].
      Countries represented in the studies included Australia, [
      • Brown A.
      • Pain T.
      • Tan A.
      • Anable L.
      • Callander E.
      • Watt K.
      • et al.
      Men’s preferences for image-guidance in prostate radiation therapy: A discrete choice experiment.
      ,
      • Hruby G.
      • Chen J.Y.
      • Bucci J.
      • Loadsman J.A.
      • Perry P.
      • Stockler M.R.
      Patients’ experiences of high-dose-rate brachytherapy boost for prostate cancer using an inpatient protocol.
      ,
      • King M.T.
      • Viney R.
      • Smith D.P.
      • Hossain I.
      • Street D.
      • Savage E.
      • et al.
      Survival gains needed to offset persistent adverse treatment effects in localised prostate cancer.
      ,
      • Brown A.
      • Pain T.
      • Preston R.
      Patient perceptions and preferences about prostate fiducial markers and ultrasound motion monitoring procedures in radiation therapy treatment.
      ] Canada, [
      • Thavarajah N.
      • McGuffin M.
      • Di Prospero L.
      • Fitch M.
      • Harth T.
      • Feldman-Stewart D.
      • et al.
      Empowering Patients through Education: Exploring Patients’ Needs about Postoperative Radiation Therapy for Prostate Cancer at the Sunnybrook Odette Cancer Centre.
      ,
      • Sigurdson S.
      • Harrison M.
      • Pearce A.
      • Richardson H.
      • Zaza K.
      • Brundage M.
      One Fraction Size Does Not Fit All: Patient Preferences for Hypofractionated Radiation Therapy From a Discrete Choice Experiment.
      ,
      • Foley K.A.
      • Groome P.A.
      • Feldman-Stewart D.
      • Brundage M.D.
      • Foley J.H.
      • McArdle S.
      • et al.
      Measuring the Quality of Personal Care in Patients Undergoing Radiotherapy for Prostate Cancer.
      ,
      • Foley K.A.
      • Feldman-Stewart D.
      • Groome P.A.
      • Brundage M.D.
      • McArdle S.
      • Wallace D.
      • et al.
      What Aspects of Personal Care Are Most Important to Patients Undergoing Radiation Therapy for Prostate Cancer?.
      ] Denmark, [
      • Dieperink K.B.B.
      • Wagner L.
      • Hansen S.
      • Hansen O.
      Embracing life after prostate cancer. A male perspective on treatment and rehabilitation.
      ] Germany, [
      • Schultze M.
      • Müller-Nordhorn J.
      • Holmberg C.
      • Müller-Nordhorn J.
      • Holmberg C.
      Discussing the effects of prostate cancer beyond biographical disruption and new normalcy: the experiences of men with prostate cancer in Germany.
      ] Italy, [
      • Renzi C.
      • Fioretti C.
      • Oliveri S.
      • Mazzocco K.
      • Zerini D.
      • Alessandro O.
      • et al.
      A qualitative investigation on patient empowerment in prostate cancer.
      ] Netherlands, [
      • Stalmeier P.F.M.
      • van Tol-Geerdink J.J.
      • van Lin E.N.J.T.
      • Schimmel E.
      • Huizenga H.
      • van Daal W.A.J.
      • et al.
      Doctors’ and patients’ preferences for participation and treatment in curative prostate cancer radiotherapy.
      ] Sweden, [
      • Hälleberg Nyman M.
      • Frank C.
      • Langius-Eklöf A.
      • Blomberg K.
      • Sundberg K.
      • Wengström Y.
      Patients’ Perspective on Participation in Care With or Without the Support of a Smartphone App During Radiotherapy for Prostate Cancer: Qualitative Study.
      ,
      • Blomberg K.
      • Wengström Y.
      • Sundberg K.
      • Browall M.
      • Isaksson A.-K.
      • Nyman M.H.
      • et al.
      Symptoms and self-care strategies during and six months after radiotherapy for prostate cancer – Scoping the perspectives of patients, professionals and literature.
      ] United Kingdom [
      • Gordon L.
      • Dickinson A.
      • Offredy M.
      Information in radiotherapy for men with localised prostate cancer: An integrative review.
      ,
      • Hackshaw-McGeagh L.E.
      • Sutton E.
      • Persad R.
      • Aning J.
      • Bahl A.
      • Koupparis A.
      • et al.
      Acceptability of dietary and physical activity lifestyle modification for men following radiotherapy or radical prostatectomy for localised prostate cancer: a qualitative investigation.
      ,
      • Appleton L.
      • Wyatt D.
      • Perkins E.
      • Parker C.
      • Crane J.
      • Jones A.
      • et al.
      The impact of prostate cancer on men’s everyday life.
      ,
      • Kinnaird W.
      • Stewart-Lord A.
      A qualitative study exploring men’s experience of sexual dysfunction as a result of radiotherapy and androgen deprivation therapy to treat prostate cancer.
      ,
      • Dyer A.
      • Kirby M.
      • White I.D.
      • Cooper A.M.
      • Id w, am c.
      Management of erectile dysfunction after prostate cancer treatment: cross-sectional surveys of the perceptions and experiences of patients and healthcare professionals in the UK.
      ,
      • Clarke H.
      • Burke G.
      A survey of prostate cancer patients’ perceptions of the support they receive during radical radiotherapy: is there room for improvement?.
      ,
      • Ormerod A.M.
      • Jessop A.J.
      An evaluation of support of patients with prostate cancer during and beyond radiotherapy treatment. A local perspective on future provision.
      ,

      M.J. Johnson C. Huang H. Chen L. Jones M. Twiddy Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers bmjspcare-2021-003438.

      ] and United States of America. [

      M.V. Mishra W.M. Thayer E. Janssen B. Hoppe C. Eggleston J.F.P. Bridges et al. Patient preferences for reducing bowel adverse events following prostate radiotherapy PLoS ONE 15 7 e0235616.

      ,
      • Shaverdian N.
      • Verruttipong D.
      • Wang P.-C.
      • Kishan A.U.
      • Demanes D.J.
      • McCloskey S.
      • et al.
      Exploring Value From the Patient’s Perspective Between Modern Radiation Therapy Modalities for Localized Prostate Cancer.
      ] The studies were published in a range of journals. Eleven were published in radiation therapy/radiation oncology specific journals and the remainder in varying oncology or other medical or supportive care journals. The earliest study was published in 2007, [
      • Stalmeier P.F.M.
      • van Tol-Geerdink J.J.
      • van Lin E.N.J.T.
      • Schimmel E.
      • Huizenga H.
      • van Daal W.A.J.
      • et al.
      Doctors’ and patients’ preferences for participation and treatment in curative prostate cancer radiotherapy.
      ] with a noted increase in recent years.

      Information Needs

      Information needs were an important factor for patients undergoing radiation therapy. Three studies were focused on the pre-treatment phase (n = 3). [
      • Chen H.
      • Twiddy M.
      • Jones L.
      • Johnson M.J.
      The unique information and communication needs of men affected by prostate cancer: A qualitative study of men’s experience.
      ,
      • Gordon L.
      • Dickinson A.
      • Offredy M.
      Information in radiotherapy for men with localised prostate cancer: An integrative review.
      ,
      • Thavarajah N.
      • McGuffin M.
      • Di Prospero L.
      • Fitch M.
      • Harth T.
      • Feldman-Stewart D.
      • et al.
      Empowering Patients through Education: Exploring Patients’ Needs about Postoperative Radiation Therapy for Prostate Cancer at the Sunnybrook Odette Cancer Centre.
      ] Across the studies, 247 men [
      • Chen H.
      • Twiddy M.
      • Jones L.
      • Johnson M.J.
      The unique information and communication needs of men affected by prostate cancer: A qualitative study of men’s experience.
      ,
      • Thavarajah N.
      • McGuffin M.
      • Di Prospero L.
      • Fitch M.
      • Harth T.
      • Feldman-Stewart D.
      • et al.
      Empowering Patients through Education: Exploring Patients’ Needs about Postoperative Radiation Therapy for Prostate Cancer at the Sunnybrook Odette Cancer Centre.
      ] and 97 carers [
      • Chen H.
      • Twiddy M.
      • Jones L.
      • Johnson M.J.
      The unique information and communication needs of men affected by prostate cancer: A qualitative study of men’s experience.
      ] were surveyed and 25 men interviewed. [
      • Chen H.
      • Twiddy M.
      • Jones L.
      • Johnson M.J.
      The unique information and communication needs of men affected by prostate cancer: A qualitative study of men’s experience.
      ] Additionally, two studies covered information needs during treatment as a secondary focus with one in the post-treatment phase. [
      • Clarke H.
      • Burke G.
      A survey of prostate cancer patients’ perceptions of the support they receive during radical radiotherapy: is there room for improvement?.
      ,
      • Ormerod A.M.
      • Jessop A.J.
      An evaluation of support of patients with prostate cancer during and beyond radiotherapy treatment. A local perspective on future provision.
      ,

      M.J. Johnson C. Huang H. Chen L. Jones M. Twiddy Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers bmjspcare-2021-003438.

      ].
      Tailored information and the manner in which it was delivered was identified as important, not just at time of diagnosis but throughout the treatment journey. [
      • Chen H.
      • Twiddy M.
      • Jones L.
      • Johnson M.J.
      The unique information and communication needs of men affected by prostate cancer: A qualitative study of men’s experience.
      ] The information needs of post-prostatectomy patients referred for radiation therapy were varied, with all domains presented (including diagnosis, decision making, radiation therapy procedures, benefits, side effects, and support network) in the survey deemed as essential by at least some participants. [
      • Thavarajah N.
      • McGuffin M.
      • Di Prospero L.
      • Fitch M.
      • Harth T.
      • Feldman-Stewart D.
      • et al.
      Empowering Patients through Education: Exploring Patients’ Needs about Postoperative Radiation Therapy for Prostate Cancer at the Sunnybrook Odette Cancer Centre.
      ] These results were corroborated by the narrative review investigating information needs around radiation therapy for prostate cancer patients. In this review the authors argued that information needs, preferences and satisfaction varied, and noted that few records focussed only on prostate cancer. [
      • Gordon L.
      • Dickinson A.
      • Offredy M.
      Information in radiotherapy for men with localised prostate cancer: An integrative review.
      ].
      Patients reported they needed more information about radiation therapy processes such as bowel and bladder preparation as a secondary focus when discussing support. For example, some participants requested instructions in addition to the reasoning behind these requirements, however it is noted that while this information may be provided to patients, it may not be retained by all. [
      • Clarke H.
      • Burke G.
      A survey of prostate cancer patients’ perceptions of the support they receive during radical radiotherapy: is there room for improvement?.
      ,
      • Ormerod A.M.
      • Jessop A.J.
      An evaluation of support of patients with prostate cancer during and beyond radiotherapy treatment. A local perspective on future provision.
      ] The information needs following treatment reflected the different phase of the treatment pathway, with a need for improved communication/information around survivorship and palliative care reported by both patients and carers. [

      M.J. Johnson C. Huang H. Chen L. Jones M. Twiddy Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers bmjspcare-2021-003438.

      ].

      Preferences / Decisions

      Preferences and decisions covered specific aspects of radiation therapy including fractionation and image-guidance, as well as understanding values and trade-offs made by participants. The preferences and decisions/decision making of participants were reported in six studies, with one focussing on pre-treatment, [
      • Stalmeier P.F.M.
      • van Tol-Geerdink J.J.
      • van Lin E.N.J.T.
      • Schimmel E.
      • Huizenga H.
      • van Daal W.A.J.
      • et al.
      Doctors’ and patients’ preferences for participation and treatment in curative prostate cancer radiotherapy.
      ] three focussing on during-treatment [
      • Sigurdson S.
      • Harrison M.
      • Pearce A.
      • Richardson H.
      • Zaza K.
      • Brundage M.
      One Fraction Size Does Not Fit All: Patient Preferences for Hypofractionated Radiation Therapy From a Discrete Choice Experiment.
      ,
      • Brown A.
      • Pain T.
      • Tan A.
      • Anable L.
      • Callander E.
      • Watt K.
      • et al.
      Men’s preferences for image-guidance in prostate radiation therapy: A discrete choice experiment.
      ] and two post-treatment. [

      T. Eade A. Kneebone G. Hruby J. Booth E. Hsiao A. Le et al. Early Outcomes and Decision Regret Using PSMA/MRI-Guided Focal Boost for Prostate Cancer SBRT Practical Radiation Oncology 12 3 2022 e201 e6.

      ,
      • King M.T.
      • Viney R.
      • Smith D.P.
      • Hossain I.
      • Street D.
      • Savage E.
      • et al.
      Survival gains needed to offset persistent adverse treatment effects in localised prostate cancer.
      ] 1055 participants were surveyed across the studies (survey population ranging from n = 58 [
      • Sigurdson S.
      • Harrison M.
      • Pearce A.
      • Richardson H.
      • Zaza K.
      • Brundage M.
      One Fraction Size Does Not Fit All: Patient Preferences for Hypofractionated Radiation Therapy From a Discrete Choice Experiment.
      ] to n = 478[
      • Brown A.
      • Pain T.
      • Tan A.
      • Anable L.
      • Callander E.
      • Watt K.
      • et al.
      Men’s preferences for image-guidance in prostate radiation therapy: A discrete choice experiment.
      ]).
      Results from a study utilising a decision aide to help patients decide on radiation treatment schedule (between 70 Gy and 74 Gy) found that 79% of men preferred active participation in the decision, with 71% favouring the less toxic treatment. [
      • Stalmeier P.F.M.
      • van Tol-Geerdink J.J.
      • van Lin E.N.J.T.
      • Schimmel E.
      • Huizenga H.
      • van Daal W.A.J.
      • et al.
      Doctors’ and patients’ preferences for participation and treatment in curative prostate cancer radiotherapy.
      ].
      Other treatment studies covered preferences of patients including: hypofractionation schedule preferences, [
      • Sigurdson S.
      • Harrison M.
      • Pearce A.
      • Richardson H.
      • Zaza K.
      • Brundage M.
      One Fraction Size Does Not Fit All: Patient Preferences for Hypofractionated Radiation Therapy From a Discrete Choice Experiment.
      ] IGRT preferences [
      • Brown A.
      • Pain T.
      • Tan A.
      • Anable L.
      • Callander E.
      • Watt K.
      • et al.
      Men’s preferences for image-guidance in prostate radiation therapy: A discrete choice experiment.
      ] and bothersome bowel side effects. [

      M.V. Mishra W.M. Thayer E. Janssen B. Hoppe C. Eggleston J.F.P. Bridges et al. Patient preferences for reducing bowel adverse events following prostate radiotherapy PLoS ONE 15 7 e0235616.

      ] Two studies elicited preferences through discrete choice experiments, [
      • Sigurdson S.
      • Harrison M.
      • Pearce A.
      • Richardson H.
      • Zaza K.
      • Brundage M.
      One Fraction Size Does Not Fit All: Patient Preferences for Hypofractionated Radiation Therapy From a Discrete Choice Experiment.
      ,
      • Brown A.
      • Pain T.
      • Tan A.
      • Anable L.
      • Callander E.
      • Watt K.
      • et al.
      Men’s preferences for image-guidance in prostate radiation therapy: A discrete choice experiment.
      ] and one through best-worst scaling. [

      M.V. Mishra W.M. Thayer E. Janssen B. Hoppe C. Eggleston J.F.P. Bridges et al. Patient preferences for reducing bowel adverse events following prostate radiotherapy PLoS ONE 15 7 e0235616.

      ] One of these preference studies included a general population cohort in addition to a patient cohort, [
      • Brown A.
      • Pain T.
      • Tan A.
      • Anable L.
      • Callander E.
      • Watt K.
      • et al.
      Men’s preferences for image-guidance in prostate radiation therapy: A discrete choice experiment.
      ] and the other two focused on patient cohorts only. [
      • Sigurdson S.
      • Harrison M.
      • Pearce A.
      • Richardson H.
      • Zaza K.
      • Brundage M.
      One Fraction Size Does Not Fit All: Patient Preferences for Hypofractionated Radiation Therapy From a Discrete Choice Experiment.
      ,

      M.V. Mishra W.M. Thayer E. Janssen B. Hoppe C. Eggleston J.F.P. Bridges et al. Patient preferences for reducing bowel adverse events following prostate radiotherapy PLoS ONE 15 7 e0235616.

      ] Overall, men preferred shorter treatment regimens associated with lower recurrence risk, lower side effects risk and no FM implantation; [
      • Sigurdson S.
      • Harrison M.
      • Pearce A.
      • Richardson H.
      • Zaza K.
      • Brundage M.
      One Fraction Size Does Not Fit All: Patient Preferences for Hypofractionated Radiation Therapy From a Discrete Choice Experiment.
      ] preferred IGRT with less cost, less pain and improved accuracy; [
      • Brown A.
      • Pain T.
      • Tan A.
      • Anable L.
      • Callander E.
      • Watt K.
      • et al.
      Men’s preferences for image-guidance in prostate radiation therapy: A discrete choice experiment.
      ] and perceived that bowel side effects of loss of control is most bothersome, and frequency least bothersome. [

      M.V. Mishra W.M. Thayer E. Janssen B. Hoppe C. Eggleston J.F.P. Bridges et al. Patient preferences for reducing bowel adverse events following prostate radiotherapy PLoS ONE 15 7 e0235616.

      ].
      When quantifying the trade-offs between side effect tolerability and survival gains, respondents were least willing to tolerate severe bowel and bladder symptoms after EBRT, with a trade-off of 27.7 median months survival benefit required for severe effects [
      • King M.T.
      • Viney R.
      • Smith D.P.
      • Hossain I.
      • Street D.
      • Savage E.
      • et al.
      Survival gains needed to offset persistent adverse treatment effects in localised prostate cancer.
      ] Decision regret in choosing SBRT over other treatment options was evaluated in 112 men, and found that 4% of men reported regret associated with side effects. [

      T. Eade A. Kneebone G. Hruby J. Booth E. Hsiao A. Le et al. Early Outcomes and Decision Regret Using PSMA/MRI-Guided Focal Boost for Prostate Cancer SBRT Practical Radiation Oncology 12 3 2022 e201 e6.

      ].

      General Experiences

      General experiences related to any aspect of treatment interaction not covered by the other major themes. The experiences of participants were reported in five studies, with three focussing on during-treatment experiences, [
      • Brown A.
      • Pain T.
      • Preston R.
      Patient perceptions and preferences about prostate fiducial markers and ultrasound motion monitoring procedures in radiation therapy treatment.
      ,
      • Foley K.A.
      • Groome P.A.
      • Feldman-Stewart D.
      • Brundage M.D.
      • Foley J.H.
      • McArdle S.
      • et al.
      Measuring the Quality of Personal Care in Patients Undergoing Radiotherapy for Prostate Cancer.
      ,
      • Renzi C.
      • Fioretti C.
      • Oliveri S.
      • Mazzocco K.
      • Zerini D.
      • Alessandro O.
      • et al.
      A qualitative investigation on patient empowerment in prostate cancer.
      ,
      • Hruby G.
      • Chen J.Y.
      • Bucci J.
      • Loadsman J.A.
      • Perry P.
      • Stockler M.R.
      Patients’ experiences of high-dose-rate brachytherapy boost for prostate cancer using an inpatient protocol.
      ] and two focussing on post-treatment. [
      • Shaverdian N.
      • Verruttipong D.
      • Wang P.-C.
      • Kishan A.U.
      • Demanes D.J.
      • McCloskey S.
      • et al.
      Exploring Value From the Patient’s Perspective Between Modern Radiation Therapy Modalities for Localized Prostate Cancer.
      ,
      • Hackshaw-McGeagh L.E.
      • Sutton E.
      • Persad R.
      • Aning J.
      • Bahl A.
      • Koupparis A.
      • et al.
      Acceptability of dietary and physical activity lifestyle modification for men following radiotherapy or radical prostatectomy for localised prostate cancer: a qualitative investigation.
      ] Across the studies, 36 men [
      • Brown A.
      • Pain T.
      • Preston R.
      Patient perceptions and preferences about prostate fiducial markers and ultrasound motion monitoring procedures in radiation therapy treatment.
      ,
      • Renzi C.
      • Fioretti C.
      • Oliveri S.
      • Mazzocco K.
      • Zerini D.
      • Alessandro O.
      • et al.
      A qualitative investigation on patient empowerment in prostate cancer.
      ,
      • Hackshaw-McGeagh L.E.
      • Sutton E.
      • Persad R.
      • Aning J.
      • Bahl A.
      • Koupparis A.
      • et al.
      Acceptability of dietary and physical activity lifestyle modification for men following radiotherapy or radical prostatectomy for localised prostate cancer: a qualitative investigation.
      ] and 7 partners [
      • Hackshaw-McGeagh L.E.
      • Sutton E.
      • Persad R.
      • Aning J.
      • Bahl A.
      • Koupparis A.
      • et al.
      Acceptability of dietary and physical activity lifestyle modification for men following radiotherapy or radical prostatectomy for localised prostate cancer: a qualitative investigation.
      ] were included in interviews and 482 men surveyed, [
      • Brown A.
      • Pain T.
      • Preston R.
      Patient perceptions and preferences about prostate fiducial markers and ultrasound motion monitoring procedures in radiation therapy treatment.
      ,
      • Foley K.A.
      • Groome P.A.
      • Feldman-Stewart D.
      • Brundage M.D.
      • Foley J.H.
      • McArdle S.
      • et al.
      Measuring the Quality of Personal Care in Patients Undergoing Radiotherapy for Prostate Cancer.
      ,
      • Hruby G.
      • Chen J.Y.
      • Bucci J.
      • Loadsman J.A.
      • Perry P.
      • Stockler M.R.
      Patients’ experiences of high-dose-rate brachytherapy boost for prostate cancer using an inpatient protocol.
      ,
      • Shaverdian N.
      • Verruttipong D.
      • Wang P.-C.
      • Kishan A.U.
      • Demanes D.J.
      • McCloskey S.
      • et al.
      Exploring Value From the Patient’s Perspective Between Modern Radiation Therapy Modalities for Localized Prostate Cancer.
      ] (survey population ranging from n = 40 [
      • Brown A.
      • Pain T.
      • Preston R.
      Patient perceptions and preferences about prostate fiducial markers and ultrasound motion monitoring procedures in radiation therapy treatment.
      ] to n = 276 [
      • Shaverdian N.
      • Verruttipong D.
      • Wang P.-C.
      • Kishan A.U.
      • Demanes D.J.
      • McCloskey S.
      • et al.
      Exploring Value From the Patient’s Perspective Between Modern Radiation Therapy Modalities for Localized Prostate Cancer.
      ]).
      During treatment, the experiences of image guided radiation therapy (IGRT) procedures were explored, with participants describing fiducial marker insertion as more invasive compared to transperineal ultrasound monitoring. [
      • Brown A.
      • Pain T.
      • Preston R.
      Patient perceptions and preferences about prostate fiducial markers and ultrasound motion monitoring procedures in radiation therapy treatment.
      ] The practical challenges of radiation therapy including time away from home/work were identified as a burden. [
      • Renzi C.
      • Fioretti C.
      • Oliveri S.
      • Mazzocco K.
      • Zerini D.
      • Alessandro O.
      • et al.
      A qualitative investigation on patient empowerment in prostate cancer.
      ] Following a high-dose brachytherapy (HDR) procedure, the most troublesome factors reported were “being stuck in bed” and “discomfort” by participants. [
      • Hruby G.
      • Chen J.Y.
      • Bucci J.
      • Loadsman J.A.
      • Perry P.
      • Stockler M.R.
      Patients’ experiences of high-dose-rate brachytherapy boost for prostate cancer using an inpatient protocol.
      ] Men undergoing brachytherapy rated discomfort as most troublesome, however 60% rated their experience as better than expected. [
      • Hruby G.
      • Chen J.Y.
      • Bucci J.
      • Loadsman J.A.
      • Perry P.
      • Stockler M.R.
      Patients’ experiences of high-dose-rate brachytherapy boost for prostate cancer using an inpatient protocol.
      ].
      Treatment regret in choosing radiation therapy over other treatments and associated side effects was evaluated. Regret regarding their specific treatment was reported by a total of 13% of men surveyed (specific modality incidence: 19% intensity modulated radiation therapy (IMRT), 18 % HDR and 5% stereotactic body radiation therapy (SBRT)), with SBRT and IMRT patients reporting short-term side effects less than expected, and SBRT patients reporting long-term side effects less than expected. [
      • Shaverdian N.
      • Verruttipong D.
      • Wang P.-C.
      • Kishan A.U.
      • Demanes D.J.
      • McCloskey S.
      • et al.
      Exploring Value From the Patient’s Perspective Between Modern Radiation Therapy Modalities for Localized Prostate Cancer.
      ] Of those reporting regret, 71% regretted their decision for radiation therapy treatment, and instead wished they chose active surveillance. [
      • Shaverdian N.
      • Verruttipong D.
      • Wang P.-C.
      • Kishan A.U.
      • Demanes D.J.
      • McCloskey S.
      • et al.
      Exploring Value From the Patient’s Perspective Between Modern Radiation Therapy Modalities for Localized Prostate Cancer.
      ].
      The acceptability of a proposed lifestyle intervention (dietary changes and physical activity) post-treatment was evaluated in interviews with patients and their partners. The main motivation identified was to participate in such interventions to reduce mortality and suffering rather than improve health and wellbeing. [
      • Hackshaw-McGeagh L.E.
      • Sutton E.
      • Persad R.
      • Aning J.
      • Bahl A.
      • Koupparis A.
      • et al.
      Acceptability of dietary and physical activity lifestyle modification for men following radiotherapy or radical prostatectomy for localised prostate cancer: a qualitative investigation.
      ].
      The care given by the multidisciplinary team (radiation oncologists, nurses and radiation therapists) during treatment was recognised by participants, with factors including politeness, respect, care and collaboration rated as important. [
      • Foley K.A.
      • Groome P.A.
      • Feldman-Stewart D.
      • Brundage M.D.
      • Foley J.H.
      • McArdle S.
      • et al.
      Measuring the Quality of Personal Care in Patients Undergoing Radiotherapy for Prostate Cancer.
      ].

      Side Effects

      Side effects included the experience of various symptoms, the impact of side effects and symptom management. Side effects were reported in seven studies, with three focussing on during-treatment side effects, [
      • Devlin E.J.
      • Whitford H.S.
      • Denson L.A.
      • Potter A.E.
      “Just As I Expected”: A Longitudinal Cohort Study of the Impact of Response Expectancies on Side Effect Experiences During Radiotherapy for Prostate Cancer.
      ,
      • Hälleberg Nyman M.
      • Frank C.
      • Langius-Eklöf A.
      • Blomberg K.
      • Sundberg K.
      • Wengström Y.
      Patients’ Perspective on Participation in Care With or Without the Support of a Smartphone App During Radiotherapy for Prostate Cancer: Qualitative Study.
      ,
      • Blomberg K.
      • Wengström Y.
      • Sundberg K.
      • Browall M.
      • Isaksson A.-K.
      • Nyman M.H.
      • et al.
      Symptoms and self-care strategies during and six months after radiotherapy for prostate cancer – Scoping the perspectives of patients, professionals and literature.
      ] and four focussing on post-treatment. [
      • Kinnaird W.
      • Stewart-Lord A.
      A qualitative study exploring men’s experience of sexual dysfunction as a result of radiotherapy and androgen deprivation therapy to treat prostate cancer.
      ,
      • Schultze M.
      • Müller-Nordhorn J.
      • Holmberg C.
      • Müller-Nordhorn J.
      • Holmberg C.
      Discussing the effects of prostate cancer beyond biographical disruption and new normalcy: the experiences of men with prostate cancer in Germany.
      ,
      • Dyer A.
      • Kirby M.
      • White I.D.
      • Cooper A.M.
      • Id w, am c.
      Management of erectile dysfunction after prostate cancer treatment: cross-sectional surveys of the perceptions and experiences of patients and healthcare professionals in the UK.
      ] 88 men were included in interview [
      • Hälleberg Nyman M.
      • Frank C.
      • Langius-Eklöf A.
      • Blomberg K.
      • Sundberg K.
      • Wengström Y.
      Patients’ Perspective on Participation in Care With or Without the Support of a Smartphone App During Radiotherapy for Prostate Cancer: Qualitative Study.
      ,
      • Blomberg K.
      • Wengström Y.
      • Sundberg K.
      • Browall M.
      • Isaksson A.-K.
      • Nyman M.H.
      • et al.
      Symptoms and self-care strategies during and six months after radiotherapy for prostate cancer – Scoping the perspectives of patients, professionals and literature.
      ,
      • Kinnaird W.
      • Stewart-Lord A.
      A qualitative study exploring men’s experience of sexual dysfunction as a result of radiotherapy and androgen deprivation therapy to treat prostate cancer.
      ,
      • Schultze M.
      • Müller-Nordhorn J.
      • Holmberg C.
      • Müller-Nordhorn J.
      • Holmberg C.
      Discussing the effects of prostate cancer beyond biographical disruption and new normalcy: the experiences of men with prostate cancer in Germany.
      ] and 172 men surveyed [
      • Devlin E.J.
      • Whitford H.S.
      • Denson L.A.
      • Potter A.E.
      “Just As I Expected”: A Longitudinal Cohort Study of the Impact of Response Expectancies on Side Effect Experiences During Radiotherapy for Prostate Cancer.
      ,
      • Dyer A.
      • Kirby M.
      • White I.D.
      • Cooper A.M.
      • Id w, am c.
      Management of erectile dysfunction after prostate cancer treatment: cross-sectional surveys of the perceptions and experiences of patients and healthcare professionals in the UK.
      ] (survey population ranging from n = 35 [
      • Devlin E.J.
      • Whitford H.S.
      • Denson L.A.
      • Potter A.E.
      “Just As I Expected”: A Longitudinal Cohort Study of the Impact of Response Expectancies on Side Effect Experiences During Radiotherapy for Prostate Cancer.
      ] to n = 137[
      • Dyer A.
      • Kirby M.
      • White I.D.
      • Cooper A.M.
      • Id w, am c.
      Management of erectile dysfunction after prostate cancer treatment: cross-sectional surveys of the perceptions and experiences of patients and healthcare professionals in the UK.
      ]) across the studies. Additionally, two studies in the during-treatment phase [

      M.V. Mishra W.M. Thayer E. Janssen B. Hoppe C. Eggleston J.F.P. Bridges et al. Patient preferences for reducing bowel adverse events following prostate radiotherapy PLoS ONE 15 7 e0235616.

      ,
      • Hruby G.
      • Chen J.Y.
      • Bucci J.
      • Loadsman J.A.
      • Perry P.
      • Stockler M.R.
      Patients’ experiences of high-dose-rate brachytherapy boost for prostate cancer using an inpatient protocol.
      ] and two studies in the post-treatment phase [
      • Appleton L.
      • Wyatt D.
      • Perkins E.
      • Parker C.
      • Crane J.
      • Jones A.
      • et al.
      The impact of prostate cancer on men’s everyday life.
      ,
      • Dieperink K.B.B.
      • Wagner L.
      • Hansen S.
      • Hansen O.
      Embracing life after prostate cancer. A male perspective on treatment and rehabilitation.
      ] covered side effects as a secondary focus.
      Urinary and bowel symptoms were identified in one study, as well as sexual problems and psychosocial problems such as anxiety and depression. [
      • Blomberg K.
      • Wengström Y.
      • Sundberg K.
      • Browall M.
      • Isaksson A.-K.
      • Nyman M.H.
      • et al.
      Symptoms and self-care strategies during and six months after radiotherapy for prostate cancer – Scoping the perspectives of patients, professionals and literature.
      ] Life-disrupting side effects were described by some men including urinary leakage, lack of potency and libido loss. [
      • Schultze M.
      • Müller-Nordhorn J.
      • Holmberg C.
      • Müller-Nordhorn J.
      • Holmberg C.
      Discussing the effects of prostate cancer beyond biographical disruption and new normalcy: the experiences of men with prostate cancer in Germany.
      ] Men reported the side effects were less than expected, with bowel/bladder bother significantly decreasing after treatment, and there was a willingness to accept side effects for cure. [
      • Dieperink K.B.B.
      • Wagner L.
      • Hansen S.
      • Hansen O.
      Embracing life after prostate cancer. A male perspective on treatment and rehabilitation.
      ] Similarly, side effects were found to be traded off for the benefits of radiation therapy. [
      • Appleton L.
      • Wyatt D.
      • Perkins E.
      • Parker C.
      • Crane J.
      • Jones A.
      • et al.
      The impact of prostate cancer on men’s everyday life.
      ].
      Men identified self-care strategies in managing their symptoms, including practical measures such as emptying their bladder prior to leaving their house. [
      • Blomberg K.
      • Wengström Y.
      • Sundberg K.
      • Browall M.
      • Isaksson A.-K.
      • Nyman M.H.
      • et al.
      Symptoms and self-care strategies during and six months after radiotherapy for prostate cancer – Scoping the perspectives of patients, professionals and literature.
      ] In one study, a smartphone app utilised during treatment increased the patient participation in managing their symptoms. [
      • Hälleberg Nyman M.
      • Frank C.
      • Langius-Eklöf A.
      • Blomberg K.
      • Sundberg K.
      • Wengström Y.
      Patients’ Perspective on Participation in Care With or Without the Support of a Smartphone App During Radiotherapy for Prostate Cancer: Qualitative Study.
      ] One study compared pre-treatment side effect expectancies to the experienced side effects in 35 men; the participant’s expectancies predicted seven out of 18 side effects near the completion of radiation therapy, that is, they experienced seven side effects that they expected. [
      • Devlin E.J.
      • Whitford H.S.
      • Denson L.A.
      • Potter A.E.
      “Just As I Expected”: A Longitudinal Cohort Study of the Impact of Response Expectancies on Side Effect Experiences During Radiotherapy for Prostate Cancer.
      ].
      Erectile dysfunction (ED) is a known common side effect of prostate cancer treatment for men receiving EBRT. Almost three-quarters of respondents (74%) reported being given information on ED prior to treatment, but 41% reported they were not offered treatment for ED [
      • Dyer A.
      • Kirby M.
      • White I.D.
      • Cooper A.M.
      • Id w, am c.
      Management of erectile dysfunction after prostate cancer treatment: cross-sectional surveys of the perceptions and experiences of patients and healthcare professionals in the UK.
      ] Similarly, some men in interview reported a lack of information or overly optimistic outlooks were given by health professionals regarding sexual function. [
      • Kinnaird W.
      • Stewart-Lord A.
      A qualitative study exploring men’s experience of sexual dysfunction as a result of radiotherapy and androgen deprivation therapy to treat prostate cancer.
      ].

      Support

      Support included that provided by health professionals, peer support and unmet needs of patients and carers. The support needs of participants were reported in three studies in the during-treatment phase, [
      • Foley K.A.
      • Feldman-Stewart D.
      • Groome P.A.
      • Brundage M.D.
      • McArdle S.
      • Wallace D.
      • et al.
      What Aspects of Personal Care Are Most Important to Patients Undergoing Radiation Therapy for Prostate Cancer?.
      ,
      • Clarke H.
      • Burke G.
      A survey of prostate cancer patients’ perceptions of the support they receive during radical radiotherapy: is there room for improvement?.
      ,
      • Ormerod A.M.
      • Jessop A.J.
      An evaluation of support of patients with prostate cancer during and beyond radiotherapy treatment. A local perspective on future provision.
      ] and one in the post-treatment phase. [

      M.J. Johnson C. Huang H. Chen L. Jones M. Twiddy Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers bmjspcare-2021-003438.

      ] Across the studies, 45 men were included in interview [
      • Clarke H.
      • Burke G.
      A survey of prostate cancer patients’ perceptions of the support they receive during radical radiotherapy: is there room for improvement?.
      ,
      • Ormerod A.M.
      • Jessop A.J.
      An evaluation of support of patients with prostate cancer during and beyond radiotherapy treatment. A local perspective on future provision.
      ,

      M.J. Johnson C. Huang H. Chen L. Jones M. Twiddy Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers bmjspcare-2021-003438.

      ] and 324 men [
      • Foley K.A.
      • Feldman-Stewart D.
      • Groome P.A.
      • Brundage M.D.
      • McArdle S.
      • Wallace D.
      • et al.
      What Aspects of Personal Care Are Most Important to Patients Undergoing Radiation Therapy for Prostate Cancer?.
      ,

      M.J. Johnson C. Huang H. Chen L. Jones M. Twiddy Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers bmjspcare-2021-003438.

      ] and 97 carers surveyed. Additionally, one study included support as a secondary focus in the treatment phase. [
      • Foley K.A.
      • Groome P.A.
      • Feldman-Stewart D.
      • Brundage M.D.
      • Foley J.H.
      • McArdle S.
      • et al.
      Measuring the Quality of Personal Care in Patients Undergoing Radiotherapy for Prostate Cancer.
      ].
      The perceived competence, empathy and respectfulness of healthcare professionals was indicated as most important during treatment. [
      • Foley K.A.
      • Feldman-Stewart D.
      • Groome P.A.
      • Brundage M.D.
      • McArdle S.
      • Wallace D.
      • et al.
      What Aspects of Personal Care Are Most Important to Patients Undergoing Radiation Therapy for Prostate Cancer?.
      ] Support provided during the treatment phase and information (including access, type and volume) was considered important, with one study showing 28% of men did not understand the reason for imaging during radiation treatment. [
      • Ormerod A.M.
      • Jessop A.J.
      An evaluation of support of patients with prostate cancer during and beyond radiotherapy treatment. A local perspective on future provision.
      ] Another study found men felt well supported during treatment, and aspects such as peer-support through meeting other men in the radiation therapy waiting room added to this feeling of support. [
      • Clarke H.
      • Burke G.
      A survey of prostate cancer patients’ perceptions of the support they receive during radical radiotherapy: is there room for improvement?.
      ].
      The support needs in the post-treatment phase reflected the changed needs of patients and carers, higher needs were associated with more advanced prostate cancer diagnoses and chronic illness. [

      M.J. Johnson C. Huang H. Chen L. Jones M. Twiddy Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers bmjspcare-2021-003438.

      ] Poor coordination was a reported frustration and attributed to the demands of the health service, meaning patient-centred care was not always delivered. [

      M.J. Johnson C. Huang H. Chen L. Jones M. Twiddy Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers bmjspcare-2021-003438.

      ].

      Discussion

      This scoping review explored the literature pertaining to perceptions and preferences of prostate cancer radiation therapy. Overall, the 27 studies included in this review covered five themes: information needs, preferences and decisions, general experiences, side effects and support, spanning three stages of treatment (pre-, during, and post-treatment stages). These themes align with several of the domains of patient-centred care first described by the Picker institute and adopted by many international health services and systems, most notably: respect for preferences and values; emotional support; physical comfort; information, communication and education; and continuity and transition. [
      • Gerteis M.
      • Edgman-Levitan S.
      • Daley J.
      • Delbanco T.
      Through the Patient’s Eyes: Understanding and Promoting Patient-Centered Care.
      ].
      The studies were categorised into five themes and pathway stage for this review. However, it is recognised that some studies may have addressed multiple pathway stages or themes. For example, two studies categorised as general experiences in post-treatment also covered side effects as part of those experiences. [
      • Appleton L.
      • Wyatt D.
      • Perkins E.
      • Parker C.
      • Crane J.
      • Jones A.
      • et al.
      The impact of prostate cancer on men’s everyday life.
      ,
      • Dieperink K.B.B.
      • Wagner L.
      • Hansen S.
      • Hansen O.
      Embracing life after prostate cancer. A male perspective on treatment and rehabilitation.
      ] The multiple categorisations reflect the interlinked nature of patient experience, perception and preference. The most overarching theme and pathway stage for mapping was determined through data extraction to keep the scoping results as clear and concise as possible, with secondary focus indicated as applicable.
      The initial search revealed a number of pre-treatment studies focused on modalities (such as surgery versus radiation), but these were excluded during title and abstract screening as they were not radiation therapy specific. Of the full-text records assessed, an additional 19.6% of records were excluded as the focus was on primary treatment decisions. While the decision of treatment modality is a critical decision already well described in existing studies and systematic reviews, [
      • Showalter T.
      • Mishra M.
      • Bridges J.
      Factors that influence patient preferences for prostate cancer management options: a systematic review.
      ,
      • Robles L.A.
      • Chou S.
      • Cole O.
      • Hamid A.
      • Griffiths A.
      • Vedhara K.
      Factors Influencing Patients’ Treatment Selection for Localised Prostate Cancer: A Systematic Review.
      ,
      • Zeliadt S.B.
      • Ramsey S.D.
      • Penson D.F.
      • Hall I.J.
      • Ekwueme D.U.
      • Stroud L.
      • et al.
      Why do men choose one treatment over another?.
      ] there are many other factors for patients to consider once a particular treatment modality such as radiation therapy has been decided.
      The focus on information particularly in the pre-treatment stage highlights the different information needs between patients at this pathway stage and the challenges faced by radiation oncology professionals in meeting these needs. The unknown environs of radiation therapy are documented, and help explain this “unknown” phenomenon often reported by patients about to start radiation therapy, influencing their need for information. [

      S. Merchant M. O'Connor G. Halkett Time, space and technology in radiotherapy departments: how do these factors impact on patients’ experiences of radiotherapy? Eur J Cancer Care (Engl). 26 2 2017 10.1111/ecc.12354 e12354.

      ] It is important for future research to recognise that “one size does not fit all” in meeting patient information needs, as there was a variance in information provision reported by men from”not enough” to”too much”. [
      • Gordon L.
      • Dickinson A.
      • Offredy M.
      Information in radiotherapy for men with localised prostate cancer: An integrative review.
      ,
      • Thavarajah N.
      • McGuffin M.
      • Di Prospero L.
      • Fitch M.
      • Harth T.
      • Feldman-Stewart D.
      • et al.
      Empowering Patients through Education: Exploring Patients’ Needs about Postoperative Radiation Therapy for Prostate Cancer at the Sunnybrook Odette Cancer Centre.
      ] There is a need for robust information at the time of diagnosis to guide overall treatment decisions as reported by treatment decision literature, [
      • Zhong W.
      • Smith B.
      • Haghighi K.
      • Mancuso P.
      Systematic Review of Decision Aids for the Management of Men With Localized Prostate Cancer.
      ,
      • Vromans R.D.
      • van Eenbergen M.C.
      • Pauws S.C.
      • Geleijnse G.
      • van der Poel H.G.
      • van de Poll-Franse L.V.
      • et al.
      Communicative aspects of decision aids for localized prostate cancer treatment – A systematic review.
      ,

      T.A. Skyring K.J. Mansfield J.R. Mullan Factors Affecting Satisfaction with the Decision-Making Process and Decision Regret for Men with a New Diagnosis of Prostate Cancer Am J Mens Health. 15 4 2021 10.1177/15579883211026812 155798832110268.

      ] however information needs continue throughout the whole treatment pathway. [

      M.J. Johnson C. Huang H. Chen L. Jones M. Twiddy Prostate cancer: unmet supportive and palliative care needs: national survey of patients and family carers bmjspcare-2021-003438.

      ].
      In analysing general experiences, valuable perspectives are gained from the patients highlighting areas that could be immediately improved such as targeted information provision. [
      • Clarke H.
      • Burke G.
      A survey of prostate cancer patients’ perceptions of the support they receive during radical radiotherapy: is there room for improvement?.
      ] Additionally, preference studies highlight where patients place value, which may be different to the healthcare professional, such as preferring lower risk. [
      • Sigurdson S.
      • Harrison M.
      • Pearce A.
      • Richardson H.
      • Zaza K.
      • Brundage M.
      One Fraction Size Does Not Fit All: Patient Preferences for Hypofractionated Radiation Therapy From a Discrete Choice Experiment.
      ] General experiences also provide insight into person-centred care aspects important to the patient – insights which can only be captured directly from the patient. [
      • Foley K.A.
      • Groome P.A.
      • Feldman-Stewart D.
      • Brundage M.D.
      • Foley J.H.
      • McArdle S.
      • et al.
      Measuring the Quality of Personal Care in Patients Undergoing Radiotherapy for Prostate Cancer.
      ,
      • Foley K.A.
      • Feldman-Stewart D.
      • Groome P.A.
      • Brundage M.D.
      • McArdle S.
      • Wallace D.
      • et al.
      What Aspects of Personal Care Are Most Important to Patients Undergoing Radiation Therapy for Prostate Cancer?.
      ].
      The side effects and their management experienced by men were the focus of during-treatment studies and included other aspects such as support and logistics, unsurprising as these aspects are the most pressing during treatment. While shorter fractionation was found to be a preference by Sigurdson et al (2022), [
      • Sigurdson S.
      • Harrison M.
      • Pearce A.
      • Richardson H.
      • Zaza K.
      • Brundage M.
      One Fraction Size Does Not Fit All: Patient Preferences for Hypofractionated Radiation Therapy From a Discrete Choice Experiment.
      ] so was lower side effect risk. This may reflect the increased advances in treatment since Stalmeier et al (2007) reported findings of patients opting for the less toxic (i.e. the lower dose of 70 Gy compared to 74 Gy) treatment. [
      • Stalmeier P.F.M.
      • van Tol-Geerdink J.J.
      • van Lin E.N.J.T.
      • Schimmel E.
      • Huizenga H.
      • van Daal W.A.J.
      • et al.
      Doctors’ and patients’ preferences for participation and treatment in curative prostate cancer radiotherapy.
      ] The predominant theme of studies in the post-treatment phase was continued management of longer-term side effects, as well as treatment regret and survivorship with lifestyle modifications.
      The importance of competence, empathy and respectfulness indicates the vital supportive roles expected of healthcare professionals in the prostate treatment pathways in providing patient-centred care. [
      • Foley K.A.
      • Feldman-Stewart D.
      • Groome P.A.
      • Brundage M.D.
      • McArdle S.
      • Wallace D.
      • et al.
      What Aspects of Personal Care Are Most Important to Patients Undergoing Radiation Therapy for Prostate Cancer?.
      ] Additional supports identified included peer-support and informational support. [
      • Clarke H.
      • Burke G.
      A survey of prostate cancer patients’ perceptions of the support they receive during radical radiotherapy: is there room for improvement?.
      ,
      • Ormerod A.M.
      • Jessop A.J.
      An evaluation of support of patients with prostate cancer during and beyond radiotherapy treatment. A local perspective on future provision.
      ] Of note, while carers were included in some studies, none were included in studies around support, indicating this as a knowledge gap.
      The paucity of radiation therapy specific literature suggests future potential areas for patient preferences research, particularly as the radiation oncology community seeks to increase and improve patient-centred care for men with prostate cancer. It is recognised that some records not included in this review may have relevant details, particularly studies about broad cancer populations that include a prostate cancer sub-cohort. Every effort was made to identify these studies, but where these sub-cohorts were not easily identifiable, studies may have been inadvertently excluded. This is a limitation of this review.
      This review highlights that many factors influence the preferences and perceptions of prostate cancer patients receiving radiation therapy. More broadly, we believe the findings identify opportunities for radiation therapy services to further develop patient-centred practices, particularly around information needs, treatment procedures and the management of side effects. Delivering patient-centred care improves treatment adherence, better patient satisfaction and overall health system efficiency. [
      • Lievens Y.
      • Grau C.
      • Aggarwal A.
      Value-based health care–what does it mean for radiotherapy?.
      ,

      Woolcock K. Value-Based Health Care – Setting the Scene for Australia. Vol 20.; 2021. doi:10.5334/ijic.s4004.

      ].

      Conclusion

      This scoping review highlights the paucity of literature currently available describing the perceptions and preferences of men with prostate cancer regarding radiation therapy and related aspects. The varied perceptions reported in the literature demonstrates the complexity of delivering patient-centred care in a healthcare setting such as radiation oncology. Continued research in the areas of pre-treatment, treatment and post-treatment patient needs will further improve patient-centred care delivery in prostate cancer.

      Declaration of Competing Interest

      The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

      Appendix A. Supplementary data

      The following are the Supplementary data to this article:

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