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Quality of Life Research
Published in: Quality of Life Research 11/2018

Open Access 01-11-2018

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

Authors: Valerie Shilling, Rachel Starkings, Valerie Jenkins, David Cella, Lesley Fallowfield

Published in: Quality of Life Research | Issue 11/2018

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Abstract

Purpose

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.

Methods

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 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.

Results

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 well-being, responsibilities and social life, and financial well-being, 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 = |0.65–0.77|. The standalone 7-item jobs and careers subscale requires further validation.

Conclusions

Initial evaluation shows that the PRRS is psychometrically robust with potential to inform the evaluation of new treatments in clinical trials and real-world studies.
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Metadata
Title
Development and validation of the patient roles and responsibilities scale in cancer patients
Authors
Valerie Shilling
Rachel Starkings
Valerie Jenkins
David Cella
Lesley Fallowfield
Publication date
01-11-2018
Publisher
Springer International Publishing
Published in
Quality of Life Research / Issue 11/2018
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-018-1940-2

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