Development and validation of the patient roles and responsibilities scale in cancer patients

Shilling, Valerie, Starkings, Rachel, Jenkins, Valerie, Cella, David and Fallowfield, Lesley (2018) Development and validation of the patient roles and responsibilities scale in cancer patients. Quality of Life Research. ISSN 0962-9343

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The Patient Roles and Responsibilities Scale (PRRS) was developed to enable a broader evaluation of the impact of cancer and cancer treatment, measuring ‘real world’ roles and responsibilities such as caring for others and financial and employment responsibilities. Here we report the development and initial validation.

The 29-item PRRS was developed from the thematic analysis of two interview studies with cancer patients and caregivers. In the evaluation study, participants completed the PRRS alongside the Social Difficulties Inventory (SDI), the main criterion measure for concurrent validity, and the Functional Assessment of Cancer Therapy – General (FACT-G) and WHO Quality Of Life-BREF (WHOQOL-BREF) for additional convergent validity data. Questionnaires were completed at baseline, 7-days (PRRS only) and 2-months. Demographic data and patient characteristics were collected at baseline.

One hundred and thirty-five patients with stage III/IV breast, lung or gynaecological cancer or melanoma completed the PRRS at least once. Five items performed poorly and were removed from the scale. The final 16 core items selected comprised 3 dimensions: Family Wellbeing, Responsibilities and Social Life, and Financial Wellbeing, identified in principal component analysis, accounting for 61.5% of total variance. Missing data (0.6%) and floor/ceiling effects were low (0%/1.5%). Cronbach’s alpha was 0.9 for the PRRS-16; 0.79-0.87 for the subscales. PRRS showed good test-retest reliability (ICC-0.86), sensitivity to change and the predicted pattern of correlation with validation measures r=ǀ0.65-0.77ǀ. The standalone 7-item jobs and careers subscale requires further validation.

Initial evaluation shows the PRRS is psychometrically robust with potential to inform the evaluation of new treatments in clinical trials and real world studies.

Item Type: Article
Keywords: Cancer · Outcome measures · Psychometric performance · Validation · Questionnaire development
Schools and Departments: Brighton and Sussex Medical School > Sussex Health Outcomes Research & Education in Cancer (SHORE-C)
Research Centres and Groups: Sussex Health Outcomes Research and Education in Cancer
Depositing User: Valerie Shilling
Date Deposited: 27 Jul 2018 15:54
Last Modified: 27 Jul 2018 15:59

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