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

项目概要/摘要： 本申请是为了响应被标识为“NOT-CA-”的特别利益通知（NOSI）而提交的。 23-036”，作为圣裘德综合癌症中心（SJCCC）P30的补充。总体目标 本研究的目的是开发一个内容适当的，临床意义，心理测量学验证的工具， 衡量儿科肿瘤学中的耻辱感。SJCCC的核心目标是增加获得癌症护理的机会， 提高存活率，优化地球仪儿童的生活质量。作为这一目标的一部分， 旨在了解社会和文化因素的作用，如与癌症诊断有关的耻辱感， 这可能会降低全球癌症护理的接受程度和治疗依从性。污名的定义是 世界卫生组织称之为“一个人或一群人之间的负面联系， 某些特征和特定疾病”，可能导致定型观念、歧视和社会孤立 受影响的人。污名已被证明会影响医疗保健的接受以及治疗 为患有各种健康状况的患者提供治疗结果，包括成人癌症。然而，污名化一直是 在全球儿童癌症人群中研究不足。超过90%被诊断患有癌症的儿童生活在 低收入和中等收入国家（LMIC）。在这些情况下，人们注意到，污名化影响了 癌症护理提供，并有助于放弃治疗，这是儿童死亡的主要原因， 癌症在LMIC在儿童癌症幸存者中，耻辱感导致心理困扰，影响学校 和社会功能，并影响坚持后续护理。目前没有专门针对儿童的污名工具 存在，衡量其他健康状况中的耻辱感的工具主要集中在成年人身上， 在高收入国家背景下开发，使其不足以用于全球儿科癌症 人口。这项拟议研究的目的是：1）开发一种临床工具，可用于识别 并测量不同文化背景下儿童肿瘤患者和幸存者所经历的耻辱感， 全球环境，以及2）在地理和文化多样的癌症转诊中试用这种新的耻辱工具 在美国、危地马拉和约旦。我们的工具开发过程将包括 系统地回顾文献，概念图建立在我们进行的初步定性工作基础上， 研究小组，一个修正的德尔菲（15名专家），和认知报告（36名参与者）。我们的试点研究将 包括来自四个癌症中心8-17.9岁患者和幸存者参与者（n=250-300）：圣犹大儿童医院 研究医院（孟菲斯）、圣刘易斯儿童医院（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）。这项研究将产生一个可靠的，有效的，可用的 在全球不同儿科肿瘤学环境中，跨护理连续体的污名临床评估工具。 1