Crosby Lori E, Williford Desireé N, King Allison A, Porter Jerlym S, Badawy Sherif M, Bulgin Dominique, Hardy Steven J, Arnold Staci D, Treadwell Marsha, Huggins Wayne, Ives Cataia, Sullivan Marian, Hamilton Carol M
Division of Behavioral Medicine and Clinical Psychology, Children's Hospital Medical Center, Cincinnati, OH, 45229, United States.
Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, 45229, United States.
J Sick Cell Dis. 2025 Jun 10;2(1):yoaf019. doi: 10.1093/jscdis/yoaf019. eCollection 2025.
Consensus Measures for Phenotypes and eXposures (PhenX) Toolkit (https://www.phenxtoolkit.org/) is a web-based catalog of recommended measurement protocols and associated bioinformatics tools to assist with study design and facilitate cross-study data integration and analyses. Before February 2023 (v.44), protocols specific to sickle cell disease did not address key psychosocial factors or social determinants of health that impact care and outcomes. This paper describes the protocol selection process and final recommendations to address this limitation.
To identify protocols for the new collection, the PhenX Sickle Cell Disease Research and Scientific Panel provided a list of scope elements for consideration and assembled a panel with relevant expertise in psychology, behavioral science, hematology, and nursing to form a Psychosocial and Social Determinants of Health Working Group. A consensus process prioritized and identified the scope elements and protocols. The 19 scope elements and related protocols initially selected were shared with the scientific community for public comment, informing final selections.
The final 15 recommended protocols assess transition readiness, self-management, impact of early aging, stigma, trust in medical care and research, resilience, spirituality, and stress responses. Another 8 protocols were selected as supplemental information. Sickle cell-relevant social determinants of health protocols were also cross-listed from other PhenX Toolkit Collections.
Recommended protocols enhance the existing Sickle Cell Disease Research Collections and the individual and structural Social Determinants of Health Collections in the PhenX Toolkit. Furthermore, the protocols will promote using validated measurement tools to investigate psychosocial factors and social determinants in sickle cell disease.
表型与暴露的共识测量（PhenX）工具包（https://www.phenxtoolkit.org/）是一个基于网络的推荐测量协议及相关生物信息学工具目录，旨在协助研究设计并促进跨研究数据整合与分析。在2023年2月（第44版）之前，镰状细胞病的特定协议未涉及影响护理和结果的关键心理社会因素或健康的社会决定因素。本文描述了为解决这一局限性而进行的协议选择过程及最终建议。
为确定新集合的协议，PhenX镰状细胞病研究与科学小组提供了一份范围要素清单以供考虑，并组建了一个由心理学、行为科学、血液学和护理方面相关专业知识的专家组成的小组，以形成健康心理社会和社会决定因素工作组。通过共识过程对范围要素和协议进行了优先排序和确定。最初选定的19个范围要素及相关协议与科学界共享以征求公众意见，为最终选择提供参考。
最终推荐的15个协议评估了过渡准备情况、自我管理、早衰影响、耻辱感、对医疗护理和研究的信任、恢复力、精神性和应激反应。另外8个协议被选为补充信息。与镰状细胞病相关的健康社会决定因素协议也从其他PhenX工具包集合中交叉列出。
推荐的协议增强了PhenX工具包中现有的镰状细胞病研究集合以及健康社会决定因素的个体和结构集合。此外，这些协议将促进使用经过验证的测量工具来研究镰状细胞病中的心理社会因素和社会决定因素。
