Psychosocial and Functional Outcomes in Youth With Chronic Sickle Cell Pain

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To describe chronic pain—pain that is present most days per month over the past 3 months—in youth with sickle cell disease (SCD). This study characterized differences in functional outcomes, psychosocial characteristics, and health care utilization for youth with SCD across 3 groups based on pain frequency: chronic pain, episodic pain, and no SCD pain in the past month.

Materials and Methods:

Children and adolescents (aged 8 to 18 y) with SCD and their parents (n=100) completed measures of functional disability, health-related quality of life, depressive symptoms, pain catastrophizing, pain beliefs, and health care utilization during an outpatient comprehensive sickle cell clinic appointment. On the basis of pain frequency and duration, patients were categorized as follows: (1) chronic (≥3 d of pain per week in the past month lasting ≥3 mo; range, 12 to 31 d/mo), (2) episodic (<3 d of pain per week for the past month; range, 1 to 10 d/mo), and (3) no SCD pain in the past month.


Consistent with other pediatric chronic pain conditions, youth characterized as having chronic sickle pain (n=40) reported significantly greater functional disability, depressive symptoms, and inpatient admissions for pain relative to patients characterized with having episodic SCD pain (n=40) or no SCD pain (n=20). The chronic and episodic pain groups had comparable levels of pain intensity, pain catastrophizing, and quality of life.


Specific definitions and criteria for chronic sickle pain in youth are needed. Identifying risk and protective factors related to the transition from acute to chronic pain is important to facilitate improved psychosocial functioning.

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