1. Association between Participants’ Characteristics, Patient-Reported Outcomes, and Clinical Outcomes in Youth with Sickle Cell Disease.
- Author
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Badawy, Sherif M., Barrera, Leonardo, Cai, Stephanie, and Thompson, Alexis A.
- Subjects
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ARM physiology , *DRUG therapy for sickle cell anemia , *HYDROXYUREA , *AGE distribution , *ANXIETY , *CHRONIC pain , *MENTAL depression , *DRUGS , *FATIGUE (Physiology) , *HOSPITAL care , *LENGTH of stay in hospitals , *HOSPITAL emergency services , *MEDICAL appointments , *MEDICAL care use , *HEALTH outcome assessment , *PATIENT compliance , *QUALITY of life , *SEX distribution , *TREATMENT effectiveness , *CROSS-sectional method , *PATIENTS' attitudes , *THERAPEUTICS - Abstract
Background. Sickle cell disease (SCD) is a chronic debilitating illness. SCD-related complications result in substantial impairment in quality of life (QOL). Our study objective was to assess the relationship of participants’ characteristics, QOL, hydroxyurea adherence, and SCD-related clinical outcomes in youth with SCD. Procedure. A single-center cross-sectional study. Thirty-four youth with SCD enrolled from clinic between January and December 2015. Participants completed PROMIS® measures and ©Modified Morisky Adherence Scale. Results. Participants had a mean age of 14.8 (SD 2.9) years and 41% were female. Participants’ age correlated with fatigue (rs=0.48; P=0.006), pain (rs=0.32; P=0.07), and anxiety (rs=0.33; P=0.06) scores. Participants with chronic pain had worse upper extremity physical function (P=0.05), pain (P=0.04), anxiety (P=0.05), and depression (P=0.05). Males reported significantly higher hydroxyurea adherence (5.4 versus 3.6, P=0.02) compared to females. Participants with chronic pain had more frequent hospitalizations (P=0.02), emergency room visits (P=0.04), and longer total length of hospital stays over 12-month period (P=0.01). Conclusions. Older and female participants had worse QOL scores, and males reported higher hydroxyurea adherence. Participants with chronic pain reported significant impairment in different QOL domains and had increased healthcare utilization. Future longitudinal studies examining the relationship between participants’ characteristics, QOL, hydroxyurea adherence, and SCD-related clinical outcomes are needed. [ABSTRACT FROM AUTHOR]
- Published
- 2018
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