Quality of life in men living with advanced and localised prostate cancer in the UK: a population-based study

Summary

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.

Introduction

The number of men surviving after being diagnosed with prostate cancer has increased rapidly in high-income countries. According to population-based cancer registry data, 10-year survival has tripled in the past 40 years in the UK.¹ In England, there are an estimated 325 000 men alive who were diagnosed with prostate cancer between 1995 and 2015.² A principal challenge for health care is to understand the needs of this increasing group of men, in particular the problems and challenges faced by those living with advanced disease (30% of men with distant metastases now survive for at least 5 years³). The quality of survival experienced, with definition of the specific effects of the disease and its treatment, must be robustly measured to facilitate appropriate care provision.⁴

Substantial sexual, urinary, and bowel morbidities have been identified following treatment of localised prostate cancer, with the pattern and severity of morbidity varying according to the type and intensity of treatment received.5, 6, 7, 8 Most existing knowledge originates from randomised controlled trials and observational studies of specific cohorts, often reporting outcomes following surgery compared with radiotherapy and surveillance in men with localised prostate cancer.⁹ Evidence for the UK has not been generated for an unselected population. Additionally, few studies have reported outcomes in men with locally advanced or metastatic disease. Such studies tend to be small and are mostly clinical trials comparing specific treatment types.10, 11, 12

Research in context

Evidence before this study

We searched Ovid databases (MEDLINE, Embase, and PsychINFO) for articles relating to health-related quality of life (HRQOL) using the terms “health-related quality of life”, “localised”, “advanced”, “metastatic”, “stage” and “prostate cancer” or “prostatic neoplasms” published between June 1, 1996, and June 1, 2018. Studies were excluded if they had no measure of HRQOL and were included if they included men with either early, late, or combined stages of prostate cancer. Most articles were about men with localised disease, with good quality evidence collected in clinical trials and observational studies of specific cohorts. Few studies have focused on those men with locally advanced or metastatic prostate cancer. In the few studies separating results by stage, poorer HRQOL has been associated with later stages of disease. However, sample sizes tend to be small. Therefore, little is known about the effects of metastatic prostate cancer in men living with and after a diagnosis of advanced disease, especially compared with men with non-metastatic disease.

Added value of the study

To our knowledge, this is first study to compare, at scale, the HRQOL and functional outcomes of men living with localised and advanced metastatic prostate cancer. Data were collected for 35 823 men, with diagnostic stage information available for 30 733, of whom 23·4% had stage III disease and 12·8% stage IV disease. The population-based approach can be used to investigate the quality of survival of the increasingly prevalent group of men living with and beyond a diagnosis of prostate cancer. We identified that men with stage III and IV disease reported more problems, including those generic to health and those related to treatment, particularly androgen deprivation therapy (ADT) than did those with early stage disease. Poor sexual function was reported by most men, regardless of stage, and more than half of men reported not being offered any intervention or support for this problem. Despite specific functional morbidities, many men with prostate cancer self-reported their overall health to be similar to men in general population studies and a substantial proportion of men with stage IV disease (23·5%) reported no problems on any dimension of the EuroQol five dimensions (EQ-5D) questionnaire. These results highlight areas of unmet need and will be crucial in helping men make informed decisions about their treatment.

Implications of all the available evidence

Most men living 18–42 months after a diagnosis of prostate cancer can expect to experience similar HRQOL to men in the general population, including those with stage III disease and many of those with stage IV disease. Although sexual morbidity is common, most men are not offered helpful interventions or support. The evidence suggests that there are subgroups of men who would benefit from service improvements around sexual rehabilitation and measures to minimise the use of ADT. These measures could include wider use of intermittent ADT (rather than continuous use), the avoidance of unnecessary ADT (ie, for non-metastatic disease), and the use of shorter courses of neoadjuvant treatment (reduced from 3 years to 1 year). We collected data from men living up to 42 months after diagnosis. Men with stage IV disease are likely to experience deterioration in their HRQOL at some point following this period. Further evidence is needed to inform appropriate service provision for such patients in these later years.

The Life After Prostate Cancer Diagnosis (LAPCD) study adopts an established approach to the measurement of health-related quality of life (HRQOL) at the population level, previously used in a national population of colorectal cancer survivors,¹³ and extends this approach to men living with all stages of prostate cancer 18–42 months after diagnosis. This timeframe was chosen because it represents the period when initial treatment is complete and side-effects and HRQOL have begun to stabilise.⁵ In men with advanced disease, treatment with androgen deprivation therapy (ADT) starts at diagnosis and therefore any ADT-related effects would be captured. An internationally recommended series of outcome measures has been used to facilitate comparison and interpretation, specifically regarding the effect of interventions offered for sexual dysfunction.¹⁴

In this report, we quantify and compare functional outcomes (urinary, bowel, sexual, vitality and hormonal) and HRQOL of men with prostate cancer across all disease stages and treatment groups, and identify implications for health-care delivery.