Improving Patient Access, Initiation, and Adherence Abstract

April 2014, Vol 5, No 3
Jayson Slotnik, JD, MPH
Managing Partner
Health Policy Strategies, Inc.
Bethesda, MD

Developing Clinically and Culturally Responsive Survivorship Care Plan for Breast Cancer
Kimlin Ashing, PhD; Monica Rosales, PhD; Mayra Serrano, MPH; African American Cancer Coalition, Latina Breast Cancer Taskforce; Courtney Vito, MD, Benjamin Paz, MD; Jeffery Weitzel, MD; Lilly Lai, MD

Background: African and Latina-American breast cancer patients (BCA) experience the greatest morbidity and mortality, suggesting a critical need for improved surveillance and quality care. The Institute of Medicine (IOM) and the Commission on Cancer (CoC) recommend that survivors receive personalized Treatment Summaries and Survivorship Care Plans (TSSCP) in order to facilitate best practice in clinical surveillance and follow-up care. This TSSCP template development study joined advocacy, scientific and medical communities to comprise a diverse advisory council (AC, N=38) to inform the development of the TSSCP-AA (African American) and TSSCP-S (English and bilingual English-Spanish) templates targeting BCA. This study reports on the development, and preliminary stakeholder evaluation of TSSCP-AA and TSSCP-S.

Methods: The overall study was guided by the Shared Care and Psychooncology Models, and Contextual Model of Health Related Quality of Life. The AC provided consensus input into the clinically and culturally relevant modifications of the American Society of Clinical Oncology (ASCO) TSSCP template to create the TSSCP-AA and TSSCP-S. Diverse stakeholders including patient advocates and health care professionals enlisted from cancer centers and community hospitals (n=51) evaluated the TSSCP-AA and TSSCP-S templates on the following domains: content, clarity, utility, and cultural and socioecological responsiveness.

Results: AC input revealed that the clinical (i.e., comorbidities) and cultural contexts (i.e., language, spirituality) must inform TSSCP to increase responsiveness and applicability to the target population. Preliminary evaluation analyses documented that stakeholders rated our TSSCP-AA and TSSCP-S templates as excellent to outstanding on content, clarity, utility, cultural responsiveness, and socioecological responsiveness (p<0.01).

Conclusion: The evaluation results imply that the TSSCP-AA and TSSCP-S templates achieved clinical and cultural responsiveness with high acceptability and utility among professionals and survivors. We created both paper and electronic versions of the TSSCP-AA and TSSCP-S for providers to create individualized TSSCPs.

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