Recommended measurement protocols for sickle cell disease in the PhenX toolkit: psychosocial factors and social determinants of health

Lori E. Crosby, Division of Behavioral Medicine and Clinical Psychology, Children's Hospital Medical Center, Cincinnati, OH, 45229, United States.
Desireé N. Williford, Division of Behavioral Medicine and Clinical Psychology, Children's Hospital Medical Center, Cincinnati, OH, 45229, United States.
Allison A. King, Pediatric Hematology/Oncology, Washington University School of Medicine, Saint Louis, MO, 63110, United States.
Jerlym S. Porter, Department of Psychology and Biobehavioral Sciences, St. Jude Children's Research Hospital, Memphis, TN, 38105, United States.
Sherif M. Badawy, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, 60611, United States.
Dominique Bulgin, The University of Tennessee, Knoxville College of Nursing, Knoxville, TN, 37996, United States.
Steven J. Hardy, Departments of Psychiatry & Behavioral Sciences and Pediatrics, George Washington University School of Medicine and Health Sciences, Washington, DC, 20037, United States.
Staci D. Arnold, Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, GA, 30322, United States.
Marsha Treadwell, University of California San Francisco (UCSF) Benioff Children's Hospital Oakland, Oakland, CA, 94609, United States.
Wayne Huggins, RTI International, Research Triangle Park, NC, 27709, United States.
Cataia Ives, RTI International, Research Triangle Park, NC, 27709, United States.
Marian Sullivan, RTI International, Research Triangle Park, NC, 27709, United States.
Carol M. Hamilton, RTI International, Research Triangle Park, NC, 27709, United States.

Document Type

Journal Article

Publication Date

1-1-2025

Journal

Journal of sickle cell disease

Volume

2

Issue

1

DOI

10.1093/jscdis/yoaf019

Keywords

PhenX toolkit; assessment measures; behavioral; psychosocial; sickle cell disease; social determinants of health

Abstract

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Department

Psychiatry and Behavioral Sciences

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