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

全球儿童癌症耻辱评估工具的开发和试点

• 批准号: 10844719
• 负责人: CHARLES ROBERTS
• 金额: $ 21.25万
• 依托单位: ST. JUDE CHILDREN'S RESEARCH HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-01 至 2024-02-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10844719
• 关键词: Adherence; Administrative Supplement; Adult; Affect; Area; Assessment tool; Attention; Cancer Center; Cancer Patient; Cancer Survivor; Caring; Cause of Death; Characteristics; Child; Child Care; Childhood; Clinical; Clinical Assessment Tool; Cognitive; Complex; Comprehensive Cancer Center; Conceptual Domain; Continuity of Patient Care; Country; Development; Diagnosis; Discrimination; Disease; Distress; Face; Future; Geography; Goals; Guatemala; Health; Healthcare; Income; International; Intervention; Jordan; Language; Linguistics; Malignant Childhood Neoplasm; Malignant Neoplasms; Manuscripts; Measurement; Measures; Methods; Oncology; Participant; Patient-Focused Outcomes; Patients; Pediatric Hospitals; Pediatric Oncology; Persons; Pilot Projects; Population; Process; Psyche structure; Psychometrics; Quality of life; Research; Research Personnel; Resources; Review Literature; Role; Saint Jude Children' s Research Hospital; Schools; Site; Social Functioning; Social isolation; Stereotyping; Structure; Survival Rate; Survivors; Testing; Translating; Treatment outcome; Underserved Population; United States; Universities; Validation; Washington; Work; World Health Organization; aged; cancer care; cancer diagnosis; cancer referral center; cancer therapy; care delivery; childhood cancer survivor; clinically relevant; concept mapping; design; experience; follow-up; health seeking behavior; improved; interest; low and middle-income countries; novel; psychological distress; response; social; social stigma; sociodemographics; survivorship; systematic review; tool; tool development; treatment adherence; usability

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

项目摘要/摘要： 本申请是为了响应被标识为“NOT-CA-”的特殊利益通知 (NOSI) 而提交的。 23-036”，作为圣裘德综合癌症中心 (SJCCC) P30 总体目标的补充。 这项研究的目的是开发一种内容适当、有临床意义、经过心理测量验证的工具 衡量儿科肿瘤学中的耻辱感是 SJCCC 的核心目标是增加获得癌症护理的机会， 作为这一目标的一部分，SJCCC 致力于提高全球儿童的生存率并优化他们的生活质量。 试图了解社会和文化因素的作用，例如与癌症诊断相关的耻辱感和 耻辱感的定义是，这可能会降低全球癌症治疗的接受度和治疗依从性。 世界卫生组织将其定义为“一个人或一群人之间的负相关关系” 某些特征和特定疾病”可能会导致刻板印象、歧视和社会孤立 已证明，受影响者的耻辱感会影响医疗保健接受度和治疗。 患有多种健康问题（包括成人癌症）的患者的结果然而，耻辱感一直存在。 全球儿科癌症人群中的研究不足，超过 90% 被诊断患有癌症的儿童生活在美国。 在这些环境中，低收入和中等收入国家（LMIC）已注意到耻辱会影响服务的质量。 癌症护理服务并导致放弃治疗，这是患有癌症的儿童死亡的主要原因 中低收入国家的癌症 在儿童癌症幸存者中，耻辱会导致心理困扰和学校影响。 和社会功能，并影响对后续护理的依从性，目前没有儿科特定的耻辱工具。 存在，衡量其他健康状况中的耻辱感的工具主要针对成年人，并且 根据高收入国家的具体情况开发，使其不足以用于全球儿科癌症 这项研究的目的是 1) 开发一种可用于识别人群的临床工具。 衡量不同文化背景下儿科肿瘤患者和幸存者所经历的耻辱感 全球环境，以及 2) 在地理和文化多样化的癌症转诊中试用这种新的耻辱工具 我们在美国、危地马拉和约旦的工具开发流程将包括： 对文献进行系统回顾，根据我们进行的初步定性工作构建概念图 研究小组、改良德尔菲法（15 名专家）和认知汇报（36 名参与者）。 包括来自四个癌症中心的 8-17.9 岁 (n=250-300) 患者和幸存者参与者： 圣裘德儿童医院 研究医院（孟菲斯）、圣路易斯儿童医院（圣路易斯）、侯赛因国王癌症中心（约旦） 和 Unidad Nacional de Oncologia Pediatrica（危地马拉）这项研究将产生可靠、有效和可用的结果。 全球不同儿科肿瘤环境中整个护理过程中耻辱感的临床评估工具。 1