Development and Piloting of a Stigma Assessment Tool for Global Pediatric Cancer

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Project Summary/Abstract: This application is being submitted in response to the Notice of Special Interest (NOSI) identified as “NOT-CA- 23-036”, as a supplement to the St. Jude Comprehensive Cancer Center (SJCCC) P30. The overarching goal of this study is to develop a content-appropriate, clinically meaningful, psychometrically validated tool to measure stigma in pediatric oncology. A core objective of the SJCCC is to increase access to cancer care, improve survival rates, and optimize quality of life for children across the globe. As part of this goal, the SJCCC seeks to understand the role of social and cultural factors, such as stigma related to cancer diagnosis and treatment, that may reduce cancer care acceptance and treatment adherence globally. Stigma is defined by the World Health Organization as the “negative association between a person or group of people who share certain characteristics and a specific disease” that may lead to stereotyping, discrimination, and social isolation of those affected. Stigma has been demonstrated to affect healthcare acceptance as well as treatment outcomes for patients with a myriad of health conditions, including adult cancers. However, stigma has been understudied among global pediatric cancer populations. Over 90% of children diagnosed with cancer live in low- and middle-income countries (LMICs). In these settings, stigma has been noted to affect the quality of cancer care delivery and contribute to treatment abandonment, a leading cause of death for children with cancer in LMICs. In survivors of childhood cancer, stigma contributes to psychological distress, impacts school and social functioning, and affects adherence to follow-up care. No pediatric specific stigma tool currently exists, and tools to measure stigma within other health conditions are primarily focused on adults and were contextually developed in high-income countries, making them insufficient for use in global pediatric cancer populations. The aims of this proposed study are to 1) develop a clinical tool that can be used to identify and measure stigma as experienced by pediatric oncology patients and survivors in culturally diverse global settings, and 2) pilot this new stigma tool in geographically and culturally diverse cancer referral settings in the United States, Guatemala, and Jordan. Our process for tool development will include a systematic review of the literature, concept mapping building off preliminary qualitative work conducted by our study team, a Modified Delphi (15 experts), and cognitive debriefing (36 participants). Our pilot study will include patient and survivor participants aged 8-17.9 (n=250-300) from four cancer centers: St. Jude Children’s Research Hospital (Memphis), St Louis Children’s Hospital (St. Louis), King Hussain Cancer Center (Jordan) and Unidad Nacional de Oncologia Pediatrica (Guatemala). This study will produce a reliable, valid, and usable clinical assessment tool for stigma in diverse global pediatric oncology settings across the care continuum. 1