A mixed‐methods study to inform development of a caregiver‐specific problem list for cancer distress screening

Author:

Buchanan Ashley1,Sarfo Astrid2,Rangel Maria Lizette3,Nangia Julie45,Badr Hoda3

Affiliation:

1. Department of Psychology & Neuroscience Baylor University Waco Texas USA

2. David Geffen School of Medicine University of California Los Angeles Los Angeles California USA

3. Margaret M. and Albert B. Alkek Department of Medicine Baylor College of Medicine Houston Texas USA

4. Lester & Sue Smith Breast Center Baylor College of Medicine Houston Texas USA

5. Dan L Duncan Comprehensive Cancer Center Houston Texas USA

Abstract

AbstractObjectiveOncology guidelines for distress management recommend use of the single‐item distress thermometer (DT) and accompanying Problem List (PL) to identify patients with high distress levels and their potential sources of distress. However, oncology practices have yet to establish standardized protocols to screen and triage caregivers with high distress levels. With an eye toward integrating caregiver‐centered support services into cancer care, this mixed‐methods study sought to assess caregiver distress and challenges that may contribute to their distress.MethodsNineteen caregivers of metastatic breast cancer patients (60% female, 47% ethnic/racial minority) completed an interview and a survey comprised of the DT, the original 39‐item PL, and five additional caregiver‐specific PL items.ResultsCaregivers reported moderate distress levels and more than half exceeded the National Comprehensive Cancer Network (NCCN) cut‐off, denoting significant distress. There was no association between caregiver distress and the number of items endorsed on the original PL. Qualitative analysis identified nine problem domains as areas of caregiver unmet need needs (i.e., practical challenges, caregiving responsibilities, social/relationship issues, caregiver and patient emotional well‐being, caregiver and patient physical well‐being, spiritual well‐being, and communication). Two of the problem domains (caregiving responsibilities and communication) were not captured in any way by the original PL.ConclusionWith further research and development, the identified domains could serve as the basis for a caregiver‐specific PL to facilitate triage and referral when incorporated as part of routine distress screening.

Funder

Dan L. Duncan Cancer Center, Baylor College of Medicine

Publisher

Wiley

Subject

Psychiatry and Mental health,Oncology,Experimental and Cognitive Psychology

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