• Kendall L Moody.
• School of Social Work, Howard University, Washington, District of Columbia, USA. Electronic address: kendall.moody@howard.edu.
• J Pain Symptom Manage. 2022 Sep 1; 64 (3): 304-309.

ContextSickle cell disease (SCD) may cause significant complications leading to increased disease burden and poor psychosocial functioning. Yet, little is known about specific disease-related variables associated with decreased health-related quality of life (HRQOL) of this population.ObjectivesThis study aims to discover whether pain and disease-related symptoms are associated with the HRQOL of pediatric patients diagnosed with SCD.MethodsA total of 150 patient (ages 8-17 years) and parent dyads were enrolled in this cross-sectional quantitative research study. Measures of HRQOL were gathered using the Pediatric Quality of Life (PedsQL) 3.0 SCD module, while the frequency of pain and SCD-related symptoms was reported by parent-proxy. Linear regression was deployed to analyze whether pain and SCD-related symptoms separately predict HRQOL scores in youth with SCD.ResultsStudy results revealed that the frequency of pain (P < 0.001) and SCD-related symptoms (P < 0.001) predicted lower HRQOL scores in children and adolescents with SCD. Moreover, age (P < 0.05) emerged as a significant predictor of HRQOL in this sample.ConclusionPain and disease-related symptoms separately predicted lower HRQOL scores in the study sample, which shows that other SCD-related symptoms aside from pain has the potential to negatively impact youth with SCD. Implications for these findings extend the knowledge of clinicians in the healthcare setting to recognize the detriment of other SCD-related symptoms that may be overlooked, as pain is often the focus.Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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