Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults With Cancer

• Type of Material: Article
• Authors: Jennifer W Mack, Dana Farber Cancer Institute; Lauren Fisher, Dana Farber Cancer Institute; Larry Kushi, Kaiser Permanente Northern California; Chun R Chao, Kaiser Permanente Northern California; Brenda Vega, Dana-Farber Cancer Institute, Boston; Gilda Rodrigues, Dana-Farber Cancer Institute, Boston; Isabel Josephs, Brown Medical School; Katharine Brock, Emory University; Susan Buchanan, Dana-Farber Cancer Institute; Mallory Casperson, Lacuna Loft; Robert M Cooper, Kaiser Permanente Southern California; Karen M Fasciano, Dana-Farber Cancer Institute; Tatjana Kolevska, Kaiser Permanente Northern California; Joshua R Lakin, Dana-Farber Cancer Institute; Anna Lefebvre, Dana-Farber Cancer Institute; Corey M Schwartz, Kaiser Permanente Northern California; Dov M Shalman, Kaiser Permanente Northern California; Catherine B Wall, Dana-Farber Cancer Institute, Boston; Lori Wiener, National Cancer Institute, Bethesda; Andrea Altschuler, Kaiser Permanente Northern California
• Language: English
• Date: 2021-08-23
• Publisher: AMER MEDICAL ASSOC
• Publication Version: Final Published Version
• Copyright Statement: 2021 Mack JW et al. JAMA Network Open.
• License: Creative Commons Attribution 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1001/jamanetworkopen.2021.21888
• Title of Journal or Parent Work: JAMA NETWORK OPEN
• Volume: 4
• Issue: 8
• Start Page: e2121888
• End Page: e2121888
• Grant/Funding Information: This study was supported by grant 5 U01 CA218651 from the National Cancer Institute (Dr Mack).
• Keywords: INSURANCE; DIAGNOSIS; SURVIVORS; Medicine, General & Internal; OUTCOMES; PREFERENCES; Science & Technology; Life Sciences & Biomedicine; SITE; PALLIATIVE CARE; INTENSITY; General & Internal Medicine; PARTICIPATION; MEDICINE
• Research Categories: Chemistry, Pharmaceutical; Health Sciences, Medicine and Surgery; Health Sciences, Oncology

Abstract

Importance: End-of-life care quality indicators specific to adolescents and young adults (AYAs) aged 12 to 39 years with cancer have not been developed. Objective: To identify priority domains for end-of-life care from the perspectives of AYAs, family caregivers, and clinicians, and to propose candidate quality indicators reflecting priorities. Design, Setting, and Participants: This qualitative study was conducted from December 6, 2018, to January 5, 2021, with no additional follow-up. In-depth interviews were conducted with patients, family caregivers, and clinicians and included a content analysis of resulting transcripts. A multidisciplinary advisory group translated priorities into proposed quality indicators. Interviews were conducted at the Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an AYA cancer support community (lacunaloft.org). Participants included 23 AYAs, 28 caregivers, and 29 clinicians. Exposure: Stage IV or recurrent cancer. Main Outcomes and Measures: Care priorities. Results: Interviews were conducted with 23 patients (mean [SD] age, 29.3 [7.3] years; 12 men [52%]; 18 White participants [78%]), 28 family caregivers (23 women [82%]; 14 White participants [50%]), and 29 clinicians (20 women [69%]; 13 White participants [45%]). Caregivers included 22 parents (79%), 5 spouses or partners (18%), and 1 other family member (4%); the 29 clinicians included 15 physicians (52%), 6 nurses or nurse practitioners (21%), and 8 social workers or psychologists (28%). Interviews identified 7 end-of-life priority domains: attention to physical symptoms, attention to quality of life, psychosocial and spiritual care, communication and decision-making, relationships with clinicians, care and treatment, and independence. Themes were consistent across the AYA age range and participant type. Although some domains were represented in quality indicators developed for adults, unique domains were identified, as well as AYA-specific manifestations of existing domains. For example, quality of life included global quality of life; attainment of life goals, legacy, and meaning; support of personal relationships; and normalcy. Within communication and decision-making, domains included communication early in the disease course, addressing prognosis and what to expect at the end of life, and opportunity for AYAs to hold desired roles in decision-making. Care and treatment domains relevant to cancer therapy, use of life-prolonging measures, and location of death emphasized the need for preference sensitivity rather than a standard path. This finding differs from existing adult indicators that propose that late-life chemotherapy, intensive measures, and hospital death should be rare. Conclusions and Relevance: The findings of this qualitative study suggest that AYAs with cancer have priorities for care at the end of life that are not fully encompassed in existing indicators for adults. Use of new indicators for this young population may better reflect patient- and family-centered experiences of quality care..