Identifying patients’ priorities for quality survivorship: conceptualizing a patient-centered approach to survivorship care

• Published in: Journal of cancer survivorship Vol. 14; no. 6; pp. 939 - 958
• Main Authors: Mead, K. Holly, Raskin, Sarah, Willis, Anne, Arem, Hannah, Murtaza, Sarah, Charney, Laura, Pratt-Chapman, Mandi
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.12.2020
• Subjects: Cancer Survivors - psychology; Concept Formation; Delivery of Health Care - standards; Female; Health Informatics; Health Promotion and Disease Prevention; Humans; Male; Medicine; Medicine & Public Health; Middle Aged; Neoplasms - therapy; Oncology; Outcome Assessment, Health Care; Patient-Centered Care - organization & administration; Primary Care Medicine; Public Health; Quality of Health Care - standards; Quality of Life Research; Survivorship; Survivors principles and priorities; Patient-centered; Cancer survivorship care; Quality
• ISSN: 1932-2259; 1932-2267
• DOI: 10.1007/s11764-020-00905-8

Purpose This study explored cancer survivors’ experiences with and priorities for cancer survivorship care to describe a patient-centered approach to quality survivorship care. Methods We conducted 22 focus groups with 170 adult survivors of breast, prostate, and colorectal cancer from six cities across the country and online. We used thematic analysis to identify participants’ principles and priorities for quality survivorship care. Results Based on our analysis of a limited group of cancer survivors, we identified two core principles that underlie participants’ expectations for survivorship care and 11 practice priorities that reflect opportunities to improve patient-centeredness at the individual, interpersonal, and organizational levels. The principles reflect participants’ desire to be better prepared for and equipped to accept and manage their chronic care needs post-cancer treatment. The priorities reflect practices that patients, providers, and cancer centers can engage in to ensure survivors’ goals for post-treatment care are met. Conclusions Results from the study suggest the need to expand conceptualization of high-quality survivorship care. The survivor principles and practice priorities identified in this study challenge the field to organize a more patient-centered survivorship care system that empowers and respects patients and provides a holistic approach to survivors’ chronic and long-term needs. Implications for Cancer Survivors Quality cancer survivorship care must reflect patients’ priorities. The findings from this study can be used to develop a patient-centered framework for survivorship care that can be used in conjunction with quality guidelines to ensure survivorship care is organized to achieve both clinical and patient-centered outcomes.