Abstract
Purpose
Due to recent treatment advances, men are increasingly living longer with advanced prostate cancer (PCa). This study sought to understand men’s experiences of living with and adjusting to advanced hormone-responsive PCa and how this influenced their quality of life (QoL), in order to highlight how support could be optimized.
Methods
Participants were recruited through a UK wide survey—the ‘Life After Prostate Cancer Diagnosis’ study. In-depth telephone interviews were conducted with 24 men (aged 46–77 years) with advanced (stage IV) hormone-responsive PCa diagnosed 18–42 months previously. Thematic analysis was undertaken using a framework approach.
Results
Most participants perceived their QoL to be relatively good, which was influenced by the following factors (enablers to ‘living well’ with PCa): a sense of connectedness to others, engagement in meaningful activities, resources (social, cognitive, financial), ability to manage uncertainty, utilization of adjustment strategies and support, communication and information from health professionals. Barriers to ‘living well’ with PCa were often the converse of these factors. These also included more troublesome PCa-related symptoms and stronger perceptions of loss and restriction.
Conclusions
In our study, men living with advanced hormone-responsive PCa often reported a good QoL. Exploring the influences on QoL in men with advanced PCa indicates how future interventions might improve the QoL of men who are struggling. Further research is required to develop and test interventions that enhance QoL for these men.
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Data availability
The datasets generated and/or analysed in the current study are not available publicly as eligible patients were informed at the time of the survey that their data would be stored securely and confidentially.
References
Cancer Research UK (2018) Prostate cancer incidence statistics. https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/prostate-cancer/incidence#heading-Three. Accessed 12/11/2018 2018
Cancer Research UK (2018) Prostate cancer survival statistics https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/prostate-cancer/survival#heading-Three. Accessed 12/11/2018 2018
National Institute For Health and Care Excellence (2019) Prostate Cancer: Diagnosis and Management [NG131]. https://www.nice.org.uk/guidance/ng131. Accessed 23rd May 2019
James ND, de Bono JS, Spears MR, Clarke NW, Mason MD, Dearnaley DP, Ritchie AWS, Amos CL, Gilson C, Jones RJ, Matheson D, Millman R, Attard G, Chowdhury S, Cross WR, Gillessen S, Parker CC, Russell JM, Berthold DR, Brawley C, Adab F, Aung S, Birtle AJ, Bowen J, Brock S, Chakraborti P, Ferguson C, Gale J, Gray E, Hingorani M, Hoskin PJ, Lester JF, Malik ZI, McKinna F, McPhail N, Money-Kyrle J, O’Sullivan J, Parikh O, Protheroe A, Robinson A, Srihari NN, Thomas C, Wagstaff J, Wylie J, Zarkar A, Parmar MKB, Sydes MR (2017) Abiraterone for prostate cancer not previously treated with hormone therapy. NEJM 377(4):338–351. https://doi.org/10.1056/NEJMoa1702900
Watson E, Shinkins B, Frith E, Neal D, Hamdy F, Walter F, Weller D, Wilkinson C, Faithfull S, Wolstenholme J, Sooriakumaran P, Kastner C, Campbell C, Neal R, Butcher H, Matthews M, Perera R, Rose P (2016) Symptoms, unmet needs, psychological well-being and health status in survivors of prostate cancer: implications for redesigning follow-up. BJU Int 117(6B):E10–E19. https://doi.org/10.1111/bju.13122
Nead KT, Sinha S, Yang DD, Nguyen PL (2017) Association of androgen deprivation therapy and depression in the treatment of prostate cancer: a systematic review and meta-analysis. Urol Oncol 35(11):664 e661–664 e669. https://doi.org/10.1016/j.urolonc.2017.07.016
Fang F, Keating NL, Mucci LA, Adami HO, Stampfer MJ, Valdimarsdottir U, Fall K (2010) Immediate risk of suicide and cardiovascular death after a prostate cancer diagnosis: cohort study in the United States. J Natl Cancer Inst 102(5):307–314. https://doi.org/10.1093/jnci/djp537
van Leeuwen PJ, Schröder FH (2010) Increased risk of suicide after prostate cancer diagnosis. Nat Rev Urol 7:369–370. https://doi.org/10.1038/nrurol.2010.83
Gentili C, McClean S, Hackshaw-McGeagh L, Bahl A, Persad R, Harcourt D (2019) Body image issues and attitudes towards exercise amongst men undergoing androgen deprivation therapy (ADT) following diagnosis of prostate cancer. Psychooncology 28:1647–1653. https://doi.org/10.1002/pon.5134
Charalambous A, Kouta C (2016) Cancer related fatigue and quality of life in patients with advanced prostate cancer undergoing chemotherapy. Biomed Res Int 2016:11–11. https://doi.org/10.1155/2016/3989286
Levy A, Cartwright T (2015) Men’s strategies for preserving emotional well-being in advanced prostate cancer: an interpretative phenomenological analysis. Psychol Health 30(10):1164–1182. https://doi.org/10.1080/08870446.2015.1040016
Shen MJ, Nelson CJ, Peters E, Slovin SF, Hall SJ, Hall M, Herrera PC, Leventhal EA, Leventhal H, Diefenbach MA (2015) Decision-making processes among prostate cancer survivors with rising PSA levels: results from a qualitative analysis. Med Decis Mak 35(4):477–486. https://doi.org/10.1177/0272989X14558424
Stapleton S, Pattison N (2015) The lived experience of men with advanced cancer in relation to their perceptions of masculinity: a qualitative phenomenological study. J Clin Nurs 24(7–8):1069–1078. https://doi.org/10.1111/jocn.12713
Rivas C, Matheson L, Nayoan J, Glaser A, Gavin A, Watson E, Wagland R (Submitted) Men’s transformations following a prostate cancer diagnosis and opportunities for intervention: a metaethnographic study
Grunfeld EA, Halliday A, Martin P, Drudge-Coates L (2011) Andropause syndrome in men treated for metastatic prostate cancer: a qualitative study of the impact of symptoms. Cancer Nurs 35(1):63–69. https://doi.org/10.1097/NCC.0b013e318211fa92
Sartor O, Flood E, Beusterien K, Park J, Webb I, MacLean D, Wong BJO, Mark Lin H (2015) Health-related quality of life in advanced prostate cancer and its treatments: biochemical failure and metastatic disease populations. Clin Genitourin Cancer 13(2):101–112. https://doi.org/10.1016/j.clgc.2014.08.001
Lepherd L (2013) Spirituality in men with advanced prostate cancer: "it's a holistic thing . . . it's a package". J Holist Nurs 32(2):89–101; quiz 102-103. https://doi.org/10.1177/0898010113504492
Carlander I, Ternestedt BM, Sahlberg-Blom E, Hellstrom I, Sandberg J (2011) Four aspects of self-image close to death at home. Int J Qual Stud Health Well Being 6(2). https://doi.org/10.3402/qhw.v6i2.5931
Lindqvist O, Rasmussen BH, Widmark A (2008) Experiences of symptoms in men with hormone refractory prostate cancer and skeletal metastases. Eur J Oncol Nurs 12(4):283–290. https://doi.org/10.1016/j.ejon.2008.03.003
Lindqvist O, Widmark A, Rasmussen BH (2006) Reclaiming wellness - living with bodily problems, as narrated by men with advanced prostate cancer. Cancer Nurs 29(4):327–337. https://doi.org/10.1097/00002820-200607000-00012
Chambers SK, Hyde MK, Laurie K, Legg M, Frydenberg M, Davis ID, Lowe A, Dunn J (2018) Experiences of Australian men diagnosed with advanced prostate cancer: a qualitative study. BMJ Open 8(2):e019917. https://doi.org/10.1136/bmjopen-2017-019917
Downing A, Wright P, Wagland R, Watson E, Kearney T, Mottram R, Allen M, Cairnduff V, McSorley O, Butcher H, Hounsome L, Donnelly C, Selby P, Kind P, Cross W, Catto JW, Huws D, Brewster DH, McNair E, Matheson L, Rivas C, Nayoan J, Horton M, Corner J, Verne J, Gavin A, Glaser AW (2016) Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes study. BMJ Open 6(12):e013555. https://doi.org/10.1136/bmjopen-2016-013555
Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 19(6):349–357. https://doi.org/10.1093/intqhc/mzm042
Matheson L, Watson EK, Nayoan J, Wagland R, Glaser A, Gavin A, Wright P, Rivas C (2017) A qualitative metasynthesis exploring the impact of prostate cancer and its management on younger, unpartnered and gay men. Eur J Cancer Care 26(6). https://doi.org/10.1111/ecc.12676
Rivas C, Matheson L, Nayoan J, Glaser A, Gavin A, Wright P, Wagland R, Watson E (2016) Ethnicity and the prostate cancer experience: a qualitative metasynthesis. Psycho-Oncology 25(10):1147–1156. https://doi.org/10.1002/pon.4222
QSR International Pty Ltd (2016) NVivo qualitative data analysis Software: version 11
Gale NK, Heath G, Cameron E, Rashid S, Redwood S (2013) Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol 13:117. https://doi.org/10.1186/1471-2288-13-117
Rosenfeld B, Roth AJ, Gandhi S, Penson D (2004) Differences in health-related quality of life of prostate cancer patients based on stage of cancer. Psycho-Oncology 13(11):800–807. https://doi.org/10.1002/pon.797
Torvinen S, Färkkilä N, Sintonen H, Saarto T, Roine RP, Taari K (2013) Health-related quality of life in prostate cancer. Acta Oncol 52(6):1094–1101. https://doi.org/10.3109/0284186X.2012.760848
Wright P, Wilding S, Watson E, Downing A, Selby P, Hounsome L, Wagland R, Brewster DH, Huws D, Butcher H, Mottram R, Kearney T, Allen M, Gavin A, Glaser A (2019) Key factors associated with social distress after prostate cancer: results from the United Kingdom Life after Prostate Cancer diagnosis study. Cancer Epidemiol 60:201–207. https://doi.org/10.1016/j.canep.2019.04.006
Wilding S, Downing A, Wright P, Selby P, Watson E, Wagland R, Donnelly DW, Hounsome L, Butcher H, Mason M, Henry A, Gavin A, Glaser AW (2019) Cancer-related symptoms, mental well-being, and psychological distress in men diagnosed with prostate cancer treated with androgen deprivation therapy. Qual Life Res 28(10):2741–2751. https://doi.org/10.1007/s11136-019-02212-x
Chambers SK, Ng SK, Baade P, Aitken JF, Hyde MK, Wittert G, Frydenberg M, Dunn J (2017) Trajectories of quality of life, life satisfaction, and psychological adjustment after prostate cancer. Psycho-Oncology 26(10):1576–1585. https://doi.org/10.1002/pon.4342
Wilding S, Downing A, Wright P, Selby P, Watson E, Wagland R, Donnelly D, Mason M, Henry A, Gavin A, Glaser AW (In preparation) Cancer-related symptoms, mental well-being and psychological distress in men diagnosed with prostate cancer treated with androgen deprivation therapy
Downing A, Wright P, Hounsome L, Selby P, Wilding S, Watson E, Wagland R, Kind P, Donnelly D, Butcher H (2018) Quality of life in men living with advanced and localised prostate cancer: a United Kingdom population-wide patient-reported outcome study of 30,000 men. Lancet Oncol
Antonovsky A (1979) Health, stress and coping. Jossey-Bass, San Fransisco
Winger JG, Adams RN, Mosher CE (2016) Relations of meaning in life and sense of coherence to distress in cancer patients: a meta-analysis. Psycho-oncology 25(1):2–10. https://doi.org/10.1002/pon.3798
Antonovsky A (1987) Unraveling the mystery of health. How people manage stress and stay well. Jossey-Bass, San Fransisco, London
Mishel MH (1990) Reconceptualization of the uncertainty in illness theory. Image J Nurs Sch 22(4):256–262
Bourke L, Gilbert S, Hooper R, Steed LA, Joshi M, Catto JWF, Saxton JM, Rosario DJ (2014) Lifestyle changes for improving disease-specific quality of life in sedentary men on long-term androgen-deprivation therapy for advanced prostate cancer: a randomised controlled trial. Eur Urol 65(5):865–872. https://doi.org/10.1016/j.eururo.2013.09.040
Husk K, Blockley K, Lovell R, Bethel A, Lang I, Byng R, Garside R (2019) What approaches to social prescribing work, for whom, and in what circumstances? A realist review. Health Soc Care Community 28:309–324. https://doi.org/10.1111/hsc.12839
Vehling S, Philipp R (2018) Existential distress and meaning-focused interventions in cancer survivorship. Curr Opin Support Palliat Care 12(1):46–51. https://doi.org/10.1097/spc.0000000000000324
Kim SH, Shin DW, Kim SY, Yang HK, Nam E, Jho HJ, Ahn E, Cho BL, Park K, Park J-H (2016) Terminal versus advanced cancer: do the general population and health care professionals share a common language? Cancer Res Treat 48(2):759–767. https://doi.org/10.4143/crt.2015.124
Courtenay WH (2000) Constructions of masculinity and their influence on men's well-being: a theory of gender and health. Soc Sci Med 50(10):1385–1401
Carter N, Bryant-Lukosius D, DiCenso A, Blythe J, Neville AJ (2011) The supportive care needs of men with advanced prostate cancer. Oncol Nurs Forum 38(2):189–198. https://doi.org/10.1188/11.ONF.189-198
Jenkins VA, Fallowfield LJ (2016) No man’s land: information needs and resources of men with metastatic castrate resistant prostate cancer. Support Care Cancer 24(11):4471–4473. https://doi.org/10.1007/s00520-016-3358-0
Acknowledgements
The authors thank all the men who responded to the survey. We thank the Movember Foundation, in partnership with Prostate Cancer UK, for funding the study. We acknowledge the following people for their contribution to the development, setting up and running of the study: Rebecca Mottram, Majorie Allen, Heather Kinnear, Conan Donnelly, Oonagh McSorley, Victoria Cairnduff, Linda Roberts, Adrian Slater, Picker Institute Europe, the LAPCD User Advisory Group and Clinical and Scientific Advisory Group. This study is based in part on information collected and quality assured by the National Cancer Registration and Analysis Service (part of Public Health England), the Northern Ireland Cancer Registry, the Welsh Cancer Intelligence & Surveillance Unit and the Scottish Cancer Registry (part of the Public Health & Intelligence Unit of NHS National Services Scotland).The work of cancer registries uses data provided by patients and collected by health services as part of their care and support.
Funding
The Life After Prostate Cancer Diagnosis study was funded by the Movember Foundation, in partnership with Prostate Cancer UK, as part of the Prostate Cancer Outcomes programme, grant number BO26/MO.
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EW, RW, PW, AG, AG and HB contributed to the study conception and design. Data collection and analysis were performed by LM, JN, CR, JB, RW and EW. The first draft of the manuscript was written by LM, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
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The authors declare that they have no conflict of interest.
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee (Newcastle/North Tyneside Research Ethics Committee (15/NE/0036), Health Research Authority Confidentiality Advisory Group (15/CAG/0110), NHS Scotland Public Benefit and Privacy Panel (0516–0364), Northern Ireland Research Ethics Office (16/NI/0073)) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
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Informed consent was obtained from all individual participants included in the study.
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Richard Wagland and Eila Watson are joint last authors.
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Matheson, L., Nayoan, J., Rivas, C. et al. Strategies for living well with hormone-responsive advanced prostate cancer—a qualitative exploration. Support Care Cancer 29, 1317–1325 (2021). https://doi.org/10.1007/s00520-020-05594-8
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DOI: https://doi.org/10.1007/s00520-020-05594-8