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Author Notes:

Soumitri Sil, Ph.D., Emory University School of Medicine, Children’s Healthcare of Atlanta, 2015 Uppergate Drive, 426H, Atlanta, GA 30322, Phone: (404) 727-2712, Fax: (404) 727-4455. Email: soumitri.sil@emory.edu

The authors extend sincere thanks and appreciation to the children and families who participated in this research by sharing their time and experience. Special thanks are also given to the clinical research coordinators and assistants for their time and effort in supporting the study: Leann Schilling, Shelley Mays, Natasha Morris, Mitchell Turner, Bailey Sturdivant, and Anne Felder.

SS, LLC, AW, MB, FA have no conflicts of interest to report. NB has research funding from NHLBI. CD has research funding from Pfizer, Micelle BioPharma, Novartis, Merck, Katz Foundation, and NIH/NICHD/NCATS; he is a consultant for Pfizer, Novartis, Global Blood Therapeutics, Epizyme, Micelle BioPharma, Modus Therapeutics, Hilton Publishing Company, and Ironwood Pharmaceutics; and he is on the advisory board of Pfizer, Novartis, and Micelle BioPharma.

Research Funding:

Funding for this work was supported by the National Institute of Health, National Center for Advancing Translational Sciences (NCATS) [grant number UL1TR000454] and the Emory and Children’s Pediatric Seed Grant Program. Preparation of this paper was supported by the National Heart, Lung, and Blood Institute (NHLBI) [grant number 1K23Hl133457-01A1] to Soumitri Sil, PhD. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.


  • Science & Technology
  • Life Sciences & Biomedicine
  • Anesthesiology
  • Clinical Neurology
  • Neurosciences & Neurology
  • sickle cell disease
  • chronic pain
  • pediatric
  • biopsychosocial
  • longitudinal

Changes in Pain and Psychosocial Functioning and Transition to Chronic Pain in Pediatric Sickle Cell Disease A Cohort Follow-up Study


Journal Title:



Volume 36, Number 6


, Pages 463-471

Type of Work:

Article | Post-print: After Peer Review


OBJECTIVES: This study aimed to: (1) examine changes in pain, psychosocial functioning, and health care utilization among children and adolescents with sickle cell disease (SCD) over a 2-year period and (2) identify baseline biopsychosocial variables associated with the development and maintenance of chronic SCD pain at follow-up. MATERIALS AND METHODS: Forty-two youth (8 to 18 y old) with SCD completed a battery of self-report measures at baseline and 2-year follow-up. Analgesic, Anesthetic, and Addiction Clinical Trial Translational Innovations Opportunities and Networks and American Pain Society Pain Taxonomy (AAPT) diagnostic criteria were used to categorize patients into pain frequency groups at both timepoints: chronic (pain on most [≥15] d/mo for the past 6 mo, per AAPT diagnostic criteria), episodic (pain on 1 to 14 d/mo), or asymptomatic (0 d/mo). RESULTS: At baseline, 31% (n=13) had chronic pain, 50% (n=21) episodic pain, and 19% (n=8) were asymptomatic. At follow-up, 40.5% (n=17) had chronic pain, 52.4% (n=22) episodic pain, and 7.1% (n=3) were asymptomatic. Between baseline and 2-year follow-up, 12% (n=5) developed chronic SCD pain. Depressive symptoms and admissions for pain significantly increased over time for youth with chronic pain (Ps<0.05). An interaction effect revealed that baseline pain groups differed in their change in pain intensity over time (P<0.01). Baseline psychosocial factors (ie, higher functional disability, greater depressive symptoms, higher pain catastrophizing, and lower quality of life) were significantly associated with chronic pain at follow-up. DISCUSSION: Biopsychosocial factors may be associated with the development and maintenance of chronic SCD pain and their relative contributions warrant further study.

Copyright information:

This is an Open Access work distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License (https://creativecommons.org/licenses/by-nc/4.0/rdf).
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