Adapting the Prostate Care Questionnaire to measure men’s experiences of prostate cancer care in Ireland

Objective: Prostate cancer is the most common cancer in men in developed countries. Incidence in Ireland is the highest in Europe. Patients’ experiences of care are an important indicator of quality of care, but are under-researched in Ireland. The PiCTure2 study aims to assess the care experiences of men recently diagnosed with prostate cancer in Ireland.

Developments: A questionnaire was developed from the Prostate Care Questionnaire (Baker et al., 2007). It was pre-tested using cognitive interviewing to modify, as appropriate, for Ireland, which has a mixed public-private healthcare system. Seventeen interviews were conducted with prostate cancer patients (managed by all major treatment modalities) recruited via Urologists and/or Clinical Nurse Specialists at three hospitals during September 2012-January 2013. Men were invited to 'think-aloud' whilst completing the survey; the interviewer used prompts where necessary. Interview recordings were transcribed and analysed thematically.

Results:

Areas of the survey which required revision included: reasons for undergoing PSA testing; routes for initial presentation, investigation and diagnosis; waiting times; and the routing of men on watchful waiting/active surveillance. Emergent themes from men’s accounts included: breaking the bad news; support (both informational and emotional) from doctors, nurses and spouses/partners; and growth in knowledge but a reliance on ‘experts’ at the outset and how this impacted on their ability to participate in care and decision-making.

Conclusions: Cognitive interviews inform survey development and provide rich qualitative data which will add to interpretation of survey findings.

Future plans: The survey was revised as required and administered to over 2,000 men recently diagnosed with prostate cancer in Ireland, identified through the population-based National Cancer Registry. Analysis will investigate: (1) men’s experiences of care and variations in this; and (2) associations between experiences and other patient-reported outcome measures such as health-related quality-of-life. The results will be of value to policy-makers, service providers, health professionals and patient support organisations.