Amy Downing1, Penny Wright2, Luke Hounsome3, Peter Selby4, Sarah Wilding5, Eila Watson6, Richard Wagland7, Paul Kind8, David W Donnelly9, Hugh Butcher2, James W F Catto10, William Cross11, Malcolm Mason12, Linda Sharp13, David Weller14, Galina Velikova2, Eilis McCaughan15, Rebecca Mottram5, Majorie Allen5, Therese Kearney9, Oonagh McSorley16, Dyfed W Huws17, David H Brewster14, Emma McNair18, Anna Gavin9, Adam W Glaser19. 1. Leeds Institute of Medical Research at St James's, University of Leeds, Leeds, UK; Leeds Institute for Data Analytics, University of Leeds, Leeds, UK. Electronic address: a.downing@leeds.ac.uk. 2. Leeds Institute of Medical Research at St James's, University of Leeds, Leeds, UK. 3. National Cancer Registration and Analysis Service, Public Health England, Bristol, UK. 4. Leeds Institute of Medical Research at St James's, University of Leeds, Leeds, UK; Leeds Teaching Hospitals NHS Trust, Leeds, UK. 5. Leeds Institute of Medical Research at St James's, University of Leeds, Leeds, UK; Leeds Institute for Data Analytics, University of Leeds, Leeds, UK. 6. Department of Midwifery, Community and Public Health, School of Nursing and Midwifery, Oxford Brookes University, Oxford, UK. 7. Faculty of Health Sciences, University of Southampton, Southampton, UK. 8. Academic Unit of Health Economics, University of Leeds, Leeds, UK. 9. Northern Ireland Cancer Registry, Queens University Belfast, Belfast, UK. 10. Academic Urology Unit, University of Sheffield, Sheffield, UK. 11. Leeds Teaching Hospitals NHS Trust, Leeds, UK. 12. Division of Cancer and Genetics, School of Medicine, Cardiff University, Cardiff, UK. 13. Institute for Health & Society, Newcastle University, Newcastle upon Tyne, UK. 14. Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, UK. 15. Institute of Nursing and Health Research, Ulster University, Coleraine, UK. 16. School of Nursing and Midwifery, Queen's University Belfast, UK. 17. Welsh Cancer Intelligence and Surveillance Unit, Public Health Wales, Cardiff, UK. 18. Information Services Division, NHS National Services Scotland, Edinburgh, UK. 19. Leeds Institute of Medical Research at St James's, University of Leeds, Leeds, UK; Leeds Institute for Data Analytics, University of Leeds, Leeds, UK; Leeds Teaching Hospitals NHS Trust, Leeds, UK.
Abstract
BACKGROUND: Little is known about the health-related quality of life (HRQOL) of men living with advanced prostate cancer. We report population-wide functional outcomes and HRQOL in men with all stages of prostate cancer and identify implications for health-care delivery. METHODS: For this population-based study, men in the UK living 18-42 months after diagnosis of prostate cancer were identified through cancer registration data. A postal survey was administered, which contained validated measures to assess functional outcomes (urinary incontinence, urinary irritation and obstruction, bowel, sexual, and vitality and hormonal function), measured with the Expanded Prostate Cancer Index Composite short form (EPIC-26), plus questions about use of interventions for sexual dysfunction) and generic HRQOL (assessed with the 5-level EuroQol five dimensions questionnaire [EQ-5D-5L] measuring mobility, self-care, usual activities, pain or discomfort, and anxiety or depression, plus a rating of self-assessed health). Log-linear and binary logistic regression models were used to compare functional outcomes and HRQOL across diagnostic stages and self-reported treatment groups. Each model included adjustment for age, socioeconomic deprivation, and number of other long-term conditions. FINDINGS: 35 823 (60·8%) of 58 930 men responded to the survey. Disease stage was known for 30 733 (85·8%) of 35 823 men; 19 599 (63·8%) had stage I or II, 7209 (23·4%) stage III, and 3925 (12·8%) stage IV disease. Mean adjusted EPIC-26 domain scores were high, indicating good function, except for sexual function, for which scores were much lower. Compared with men who did not receive androgen deprivation therapy, more men who received the therapy reported moderate to big problems with hot flushes (30·7% [95% CI 29·8-31·6] vs 5·4% [5·0-5·8]), low energy (29·4% [95% CI 28·6-30·3] vs 14·7% [14·2-15·3]), and weight gain (22·5%, 21·7-23·3) vs 6·9% [6·5-7·3]). Poor sexual function was common (81·0%; 95% CI 80·6-81·5), regardless of stage, and more than half of men (n=18 782 [55·8%]) were not offered any intervention to help with this condition. Overall, self-assessed health was similar in men with stage I-III disease, and although slightly reduced in those with stage IV cancer, 23·5% of men with metastatic disease reported no problems on any EQ-5D dimension. INTERPRETATION: Men diagnosed with advanced disease do not report substantially different HRQOL outcomes to those diagnosed with localised disease, although considerable problems with hormonal function and fatigue are reported in men treated with androgen deprivation therapy. Sexual dysfunction is common and most men are not offered helpful intervention or support. Service improvements around sexual rehabilitation and measures to reduce the effects of androgen deprivation therapy are required. FUNDING: The Movember Foundation, in partnership with Prostate Cancer UK.
BACKGROUND: Little is known about the health-related quality of life (HRQOL) of men living with advanced prostate cancer. We report population-wide functional outcomes and HRQOL in men with all stages of prostate cancer and identify implications for health-care delivery. METHODS: For this population-based study, men in the UK living 18-42 months after diagnosis of prostate cancer were identified through cancer registration data. A postal survey was administered, which contained validated measures to assess functional outcomes (urinary incontinence, urinary irritation and obstruction, bowel, sexual, and vitality and hormonal function), measured with the Expanded Prostate Cancer Index Composite short form (EPIC-26), plus questions about use of interventions for sexual dysfunction) and generic HRQOL (assessed with the 5-level EuroQol five dimensions questionnaire [EQ-5D-5L] measuring mobility, self-care, usual activities, pain or discomfort, and anxiety or depression, plus a rating of self-assessed health). Log-linear and binary logistic regression models were used to compare functional outcomes and HRQOL across diagnostic stages and self-reported treatment groups. Each model included adjustment for age, socioeconomic deprivation, and number of other long-term conditions. FINDINGS: 35 823 (60·8%) of 58 930 men responded to the survey. Disease stage was known for 30 733 (85·8%) of 35 823 men; 19 599 (63·8%) had stage I or II, 7209 (23·4%) stage III, and 3925 (12·8%) stage IV disease. Mean adjusted EPIC-26 domain scores were high, indicating good function, except for sexual function, for which scores were much lower. Compared with men who did not receive androgen deprivation therapy, more men who received the therapy reported moderate to big problems with hot flushes (30·7% [95% CI 29·8-31·6] vs 5·4% [5·0-5·8]), low energy (29·4% [95% CI 28·6-30·3] vs 14·7% [14·2-15·3]), and weight gain (22·5%, 21·7-23·3) vs 6·9% [6·5-7·3]). Poor sexual function was common (81·0%; 95% CI 80·6-81·5), regardless of stage, and more than half of men (n=18 782 [55·8%]) were not offered any intervention to help with this condition. Overall, self-assessed health was similar in men with stage I-III disease, and although slightly reduced in those with stage IV cancer, 23·5% of men with metastatic disease reported no problems on any EQ-5D dimension. INTERPRETATION:Men diagnosed with advanced disease do not report substantially different HRQOL outcomes to those diagnosed with localised disease, although considerable problems with hormonal function and fatigue are reported in men treated with androgen deprivation therapy. Sexual dysfunction is common and most men are not offered helpful intervention or support. Service improvements around sexual rehabilitation and measures to reduce the effects of androgen deprivation therapy are required. FUNDING: The Movember Foundation, in partnership with Prostate Cancer UK.
Authors: Melissa K Hyde; Melissa Opozda; Kirstyn Laurie; Andrew D Vincent; John L Oliffe; Christian J Nelson; Jeff Dunn; Eric Chung; Michael Gillman; Rustom P Manecksha; Gary Wittert; Suzanne K Chambers Journal: Support Care Cancer Date: 2020-09-26 Impact factor: 3.603
Authors: Sarah Wilding; Amy Downing; Penny Wright; Peter Selby; Eila Watson; Richard Wagland; David W Donnelly; Luke Hounsome; Hugh Butcher; Malcolm Mason; Ann Henry; Anna Gavin; Adam W Glaser Journal: Qual Life Res Date: 2019-05-21 Impact factor: 4.147
Authors: David W Donnelly; Linda C Vis; Therese Kearney; Linda Sharp; Damien Bennett; Sarah Wilding; Amy Downing; Penny Wright; Eila Watson; Richard Wagland; William R Cross; Malcolm D Mason; Sabine Siesling; Jeannette G van Manen; Adam W Glaser; Anna Gavin Journal: BMC Cancer Date: 2019-10-15 Impact factor: 4.430
Authors: Tom Callender; Mark Emberton; Steve Morris; Ros Eeles; Zsofia Kote-Jarai; Paul D P Pharoah; Nora Pashayan Journal: PLoS Med Date: 2019-12-20 Impact factor: 11.069