Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2019 Jun;28(6):1655-1668.
doi: 10.1007/s11136-019-02154-4. Epub 2019 Mar 18.

Development and validation of the caregiver roles and responsibilities scale in cancer caregivers

Valerie Shilling  1 , Rachel Starkings  2 , Valerie Jenkins  2 , David Cella  3 , Lesley Fallowfield  2
Affiliations

Development and validation of the caregiver roles and responsibilities scale in cancer caregivers

Valerie Shilling et al. Qual Life Res. 2019 Jun.

Abstract

Purpose: The caregiver roles and responsibilities scale (CRRS) was developed to facilitate formal assessment of broad life impacts for informal (i.e. unpaid) caregivers to people with cancer. Here we report the development and initial validation.

Methods: The CRRS was developed from the thematic analysis of two interview studies with cancer patients (stage III-IV breast, gynaecological, lung or melanoma) and caregivers. In the evaluation studies, participants completed the CRRS alongside the Caregiver Quality of Life-Cancer, the main criterion measure for concurrent validity, and the WHOQOL-BREF for additional convergent validity data. Questionnaires were completed at baseline, 7-days and 2-months. Demographic data and patient characteristics were collected at baseline.

Results: Two-hundred and forty-five caregivers to people with stage I-IV breast, colorectal, gynaecological, head and neck, lung or renal cancer or melanoma completed the CRRS at least once. The final 41 core items selected comprised five subscales: Support and Impact, Lifestyle, Emotional Health and Wellbeing, Self-care and Financial Wellbeing as well as three standalone items. Missing data rate was low (0.6%); there were no ceiling or floor effects for total scores. Cronbach's alpha was 0.92 for the CRRS-41; 0.75-0.87 for the subscales. CRRS showed good test-retest reliability (ICC = 0.91), sensitivity to change and the predicted pattern of correlation with validation measures r = 0.75-0.89. The standalone 7-item jobs and careers subscale requires further validation.

Conclusions: Initial evaluation shows the CRRS has good validity and reliability and is a promising tool for the assessment of the effects of cancer and cancer treatment on the lives and wellbeing of informal caregivers.

Keywords: Cancer; Caregiving; Outcome measures; Psychometric performance; Questionnaire development; Validation.

PubMed Disclaimer

Conflict of interest statement

VS has received an honorarium from Bristol-Myers Squibb. RS declares no conflict of interest. VJ has received research grants from Novartis and Sanofi Aventis. DC has received research grants from Ipsen, Clovis, Novartis and has consulted for Pfizer, Novartis, Regeneration, Astellas, Abbvie. He is a member of the National Quality Forum Scientific Methods Panel. LF has received research grants from Boehringer Ingelheim, Novartis, Bristol-Myers Squibb and Amgen, consulted for AstraZeneca, Puma Biotechnology and Roche and received honoraria from Amgen, Teva, Boehringer Ingelheim, Voluntis Oncolia, Novartis, Astellas Pharma, Eisai and Exerpta Medica.

Figures

Fig. 1
Fig. 1
Flow of participants through study
See this image and copyright information in PMC

References

    1. Glajchen M. The emerging role and needs of family caregivers in cancer care. The Journal of Supportive Oncology. 2004;2(2):145–155. - PubMed
    1. Northouse LL, et al. Interventions with family caregivers of cancer patients: Meta-analysis of randomized trials. CA: A Cancer Journal for Clinicans. 2010;60(5):317–339. - PMC - PubMed
    1. Kim Y, et al. Psychological adjustment of cancer caregivers with multiple roles. Psychooncology. 2006;15(9):795–804. doi: 10.1002/pon.1013. - DOI - PubMed
    1. Fletcher BS, et al. The cancer family caregiving experience: An updated and expanded conceptual model. European Journal of Oncology Nursing. 2012;16(4):387–398. doi: 10.1016/j.ejon.2011.09.001. - DOI - PMC - PubMed
    1. Weitzner MA, Haley WE, Chen H. The family caregiver of the older cancer patient. Hematology/Oncology Clinics of North America. 2000;14(1):269–281. doi: 10.1016/S0889-8588(05)70288-4. - DOI - PubMed