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Agreement between youth and caregiver report of pain and functioning in pediatric sickle cell disease: PedsQL sickle cell disease module

Author(s): Alberts NM; Gilbert A; Kang G; Okhomina VI; Flynn JS; Hodges J; Hankins JS; Klosky JL;

Pain is a primary symptom of sickle cell disease (SCD) and is often severe and chronic. To treat SCD-related pain, proper assessment of SCD pain among youth, including the degree of concordance or agreement between youth and caregiver reports of pain, is essential but has not yet been adequately evaluated. In this study, 525 youth with SCD and their paren ...

Article GUID: 37878652


Empirically Derived Profiles of Health-Related Quality of Life in Youth and Young Adults with Sickle Cell Disease.

Author(s): Keenan ME, Loew M, Berlin KS, Hodges J, Alberts NM, Hankins JS, Porter JS

OBJECTIVE: Determining how the health-related quality of life (HRQOL) is impacted by living with Sickle Cell Disease (SCD) can inform psychosocial interventions. The purpose of the present study is to determine if demographic and treatment variables predict membership into empirically derived subgroups of HRQOL among youth and young adults with SCD. METHO ...

Article GUID: 33249456


Pain in Youth with Sickle Cell Disease: A Report from the Sickle Cell Clinical Research and Intervention Program.

Author(s): Alberts NM, Kang G, Li C, Richardson PA, Hodges J, Hankins JS, Klosky JL

OBJECTIVES: Pain is prevalent among youth with sickle cell disease (SCD). However, previous research has been limited by small sample sizes, and lacked examinations of developmental differences in pain - which are critical to minimizing the development of chronic pain as youth transition into adulthood. The primary aim of the current study was to compare ...

Article GUID: 33093339


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