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： 本申请是对特别利益通知(NOSI)的回应，该通知被标识为“非CA-CA- 23-036“，作为圣犹大综合癌症中心(SJCCC)P30的补充资料。首要目标是 这项研究的目的是开发一种内容适当、具有临床意义、经过心理测量学验证的工具，以 测量儿科肿瘤学中的污名。SJCCC的一个核心目标是增加获得癌症护理的机会， 提高存活率，优化全球儿童的生活质量。作为这一目标的一部分，SJCCC 寻求了解社会和文化因素的作用，如与癌症诊断和治疗相关的耻辱 治疗，这可能会降低全球对癌症护理的接受度和治疗依从性。柱头的定义是 世界卫生组织将其定义为“一个人或一群人之间的负面联系 可能导致成见、歧视和社会孤立的某些特征和特定疾病 受影响的人。耻辱已被证明会影响医疗接受和治疗 有多种健康状况的患者的结果，包括成人癌症。然而，耻辱一直是 在全球儿科癌症人群中未得到充分研究。超过90%的被诊断患有癌症的儿童生活在 中低收入国家(LMIC)。在这些环境中，耻辱已经被注意到影响到 癌症护理的提供并导致放弃治疗，这是患有癌症的儿童的主要死亡原因 LMIC中的癌症。在儿童癌症幸存者中，耻辱会造成心理痛苦，影响学校 和社会功能，并影响对后续护理的坚持。目前还没有儿科专用污名工具 存在，在其他健康状况下衡量污名的工具主要集中在成年人和 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。这项拟议的研究的目的是1)开发一种临床工具，可以用来识别 并测量不同文化背景的儿科肿瘤患者和幸存者所经历的耻辱 全球环境，以及2)在地理和文化多样化的癌症转诊中试验这一新的污名工具 背景设在美国、危地马拉和约旦。我们的工具开发流程将包括 系统回顾文献，概念图建立在我们进行的初步定性工作的基础上 研究小组，改良的德尔菲法(15名专家)和认知情况汇报(36名参与者)。我们的初步研究将 包括来自四个癌症中心的8-17.9岁(n=250-300)的患者和幸存者：圣犹大儿童医院 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) 和小儿科肿瘤学联合会(危地马拉)。本研究将产生可靠的、有效的、可用的 在不同的全球儿科肿瘤学环境中，整个护理连续体中污名的临床评估工具。 1