Developing a measure of patient experience of prostate cancer care

Background: In England, improvement of cancer services is a policy priority and improvement of patient experience of cancer care is an element of this policy. National surveys identified that patients with prostate cancer (the most common cancer in men) experienced worse care than patients with other cancers. Aim: To develop a valid, reliable and acceptable measure of patient experience of prostate cancer care suitable for use in routine practice. Methods: 1. Review of the literature to establish the existence of any measures of prostate cancer care, and patients’ and carers’ experiences of prostate cancer care 2. Survey of Cancer Networks to investigate their experiences of administering measures of patient experience and suggestions for developing a new measure 3. Interviews of healthcare professionals, voluntary sector staff, patients and carers to establish their views on the format and content of a new measure 4. Piloting the questionnaire to review its comprehensibility and reduce the number of questions to a minimum 5. Testing the questionnaire for validity, reliability and acceptability in hospital settings Findings: The questionnaire, PCQ-P (Prostate Care Questionnaire – Patients), has been developed through a detailed and systematic process. It has acceptable validity and reliability and has been used successfully in hospitals. PCQ-P is divided into sections related to different phases of care that can be used individually or in combinations as preferred. Questionnaire findings can be presented by individual question and as scores for sections, so individual aspects of patients’ experiences of care can be examined, as well as comparisons made between different hospitals. Conclusions: PCQ-P has been systematically developed and may be used at local, regional and national levels. The methods used to develop this questionnaire may be adopted to develop measures of patient experience of other cancers.