Establishing a population-based patient-reported outcomes study (PROMs) using national cancer registries across two jurisdictions: The Prostate Cancer Treatment, your experience (PiCTure) study - Abstract

OBJECTIVE: To establish an international patient-reported outcomes (PROMs) study among prostate cancer survivors, up to 18 years postdiagnosis, in two countries with different healthcare systems and ethical frameworks.

DESIGN: A cross-sectional, postal survey of prostate cancer survivors sampled and recruited via two population-based cancer registries. Healthcare professionals (HCPs) evaluated patients for eligibility to participate. Questionnaires contained validated instruments to assess health-related quality of life and psychological well-being, including QLQ-C30, QLQ-PR25, EQ-5D-5L, 21-question Depression, Anxiety and Stress Scale (DASS-21) and the Decisional Regret Scale.

SETTING: Republic of Ireland (RoI) and Northern Ireland (NI).

PRIMARY OUTCOME MEASURES: Registration completeness, predictors of eligibility and response, data missingness, unweighted and weighted PROMs.

RESULTS: Prostate cancer registration was 80% (95% CI 75% to 84%) and 91% (95% CI 89% to 93%) complete 2 years postdiagnosis in NI and RoI, respectively. Of 12,322 survivors sampled from registries, 53% (n=6559) were classified as eligible following HCP screening. In the multivariate analysis, significant predictors of eligibility were: being ≤ 59 years of age at diagnosis (p< 0.001), short-term survivor (< 5 years postdiagnosis; p< 0.001) and from RoI (p< 0.001). 3348 completed the questionnaire, yielding a 54% adjusted response rate. 13% of men or their families called the study freephone with queries for assistance with questionnaire completion or to talk about their experience. Significant predictors of response in multivariate analysis were: being ≤59 years at diagnosis (p< 0.001) and from RoI (p=0.016). Mean number of missing questions in validated instruments ranged from 0.12 (SD 0.71; EQ-5D-5L) to 3.72 (SD 6.30; QLQ-PR25). Weighted and unweighted mean EQ-5D-5L, QLQ-C30 and QLQ-PR25 scores were similar, as were the weighted and unweighted prevalences of depression, anxiety and distress.

CONCLUSIONS: It was feasible to perform PROMs studies across jurisdictions, using cancer registries as sampling frames; we amassed one of the largest, international, population-based data set of prostate cancer survivors. We highlight improvements which could inform future PROMs studies, including utilising general practitioners to assess eligibility and providing a freephone service.

Written by:
Drummond FJ, Kinnear H, Donnelly C, O'Leary E, O'Brien K, Burns RM, Gavin A, Sharp L.   Are you the author?
National Cancer Registry Ireland, Cork, Ireland; Northern Ireland Cancer Registry, Centre for Public Health, Queen's University Belfast, Belfast, UK; JE Cairnes School of Business and Economics, National University of Ireland, Galway, Ireland.

Reference: BMJ Open. 2015 Apr 17;5(4):e006851.
doi: 10.1136/bmjopen-2014-006851

PubMed Abstract
PMID: 25888474 Prostate Cancer Section