Patient, Caregiver, and Clinician Perspectives on Core Components of Therapeutic Alliance for Adolescents and Young Adults With Advanced Cancer: A Qualitative Study

• Type of Material: Article
• Authors: Rosemarie Mastropolo, Dana-Farber Cancer Institute; Andrea Altschuler, Kaiser Permanente; Katharine Brock, Emory University; Mallory Casperson, Cactus Cancer Society; Chun R. Chao, Kaiser Permanente; Lauren Fisher, Dana-Farber Cancer Institute; Katie A. Greenzang, Dana-Farber Cancer Institute; Lawrence H. Kushi, Kaiser Permanente; Joshua R. Lakin, Dana-Farber Cancer Institute; Anna Lefebvre, Dana-Farber Cancer Institute; Corey M. Schwartz, Kaiser Permanente; Dov M. Shalman, Kaiser Permanente; Catherine B. Wall, Dana-Farber Cancer Institute; Lori Wiener, National Cancer Institute; Jennifer W. Mack, Dana-Farber Cancer Institute
• Language: English
• Date: 2023-08-09
• Publisher: JAMA
• Publication Version: Final Published Version
• Copyright Statement: 2023 Mastropolo R et al. JAMA Network Open.
• License: Creative Commons Attribution 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1001/jamanetworkopen.2023.28153
• Title of Journal or Parent Work: JAMA Network Open
• Volume: 6
• Issue: 8
• Start Page: E2328153
• End Page: E2328153
• Grant/Funding Information: This study was supported by the National Cancer Institute through grant 5 U01 CA218651 (Dr Mack) and (in part) by the Intramural Program of the National Cancer Institute, National Institutes of Health (Dr Wiener).
• Keywords: Communication; Humans; Neoplasms; Female; Therapeutic Alliance; Young Adult; Caregivers; Adolescent; Male
• Research Categories: Health Sciences, Rehabilitation and Therapy; Health Sciences, Oncology

Abstract

Importance: The patient-clinician therapeutic alliance is an important aspect of high-quality cancer care. However, components of the therapeutic alliance in adolescents and young adults (AYAs, aged 12-39 years) with cancer have not been defined. Objective: To identify components of and barriers to the therapeutic alliance between AYAs, caregivers, and clinicians from the perspective of all key stakeholders. Design, Setting, and Participants: In this qualitative study, semistructured in-depth interviews with patients, caregivers, and clinicians were conducted from 2018 to 2021 with no additional follow-up, with content analysis of resulting transcripts. Participants were recruited from Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an online cancer support community (Cactus Cancer Society). Eligible participants were English- or Spanish-speaking. Eligible patients were aged 12 to 39 years with stage IV or recurrent cancer. Eligible caregivers cared for an AYA living with advanced cancer or one who had died within 5 years. Eligible clinicians routinely provided care for AYAs with cancer. Main Outcomes and Measures: Perspectives on therapeutic alliance. Results: Interviews were conducted with 80 participants: 23 were patients (48% were female; 78% were White), 28 were caregivers (82% were female; 50% were White), and 29 were clinicians (69% were female; 45% were White). The mean (SD) age of patients was 29 (7.3) years. Interviews identified 6 components of therapeutic alliance: (1) compassion; (2) sense of connection; (3) clinician presence; (4) information sharing; (5) shared goals; and (6) individualization of care. While some domains were represented in prior models of therapeutic alliance, a unique domain was identified related to the need for individualization of the approach to care for AYA patients and their caregivers. Interviews also identified potential barriers to building the therapeutic alliance specific to the AYA population, including managing discordant needs between patients and caregivers and communication challenges at the end of life. Conclusions and Relevance: This study identified core components and barriers to building therapeutic alliance in the AYA advanced cancer population from the perspective of all the key stakeholders in the relationship. A novel component highlighting the need for individualization was identified. This model enables a deeper understanding of how to build therapeutic alliance in the AYA advanced cancer population, which may guide clinician training and facilitate improved care for this vulnerable population.