Postdischarge Pain, Functional Limitations and Impact on Caregivers of Children with Sickle Cell Disease Treated for Painful Events

Pediatric Hematology/Oncology, Medical College of Wisconsin/Children's Research Institute of The Children's Hospital of Wisconsin, Milwaukee, WI 53226, USA.
British Journal of Haematology (Impact Factor: 4.71). 03/2009; 144(5):782-8. DOI: 10.1111/j.1365-2141.2008.07512.x
Source: PubMed


This study aimed to describe the outcomes of children with sickle cell disease (SCD) after discharge from medical care for vaso-occlusive painful events and to test the hypothesis that older age, longer length of hospital stay, and a history of frequent vaso-occlusive painful events will be associated with poor outcomes. Children aged 2-18 years with SCD treated in the emergency department or inpatient unit for a painful event were contacted after discharge to assess: days of pain, days of functional limitations for the child, and days of work/school absenteeism for the caregiver. Descriptive statistics were applied and multivariate logistic regression examined the association between the predictors and outcomes. Fifty-eight children were enrolled (mean age 10.8 +/- 4.8 years, 53.5% female). Postdischarge, 46.5% of children reported three or more days of pain, 54.3% had two or more days of functional limitations, and 24.3% of caregivers missed two or more days of work/school. Children with three or more prior painful events had increased odds of a poor outcome postdischarge (OR 1.79; 95% CI = 1.026, 3.096). In conclusion, acute vaso-occlusive painful events impact the lives of children with SCD and their caregivers, even after discharge to home.


Available from: Julie Panepinto, Dec 22, 2014
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    • "Only one prior study has examined the impact of sickle cell disease on the health-related quality of life (HRQL) of parents of children with sickle cell disease [6]. They found that female caregivers of children with sickle cell disease displayed lower scores on the depressive moods, daily activities and vitality subscales of the TNO-AZL Adult Quality of Life questionnaire [7] compared to socio-economic matched controls. However, this study was in a Dutch (although primarily immigrant) population and so it is unclear whether these results translate to caregivers of children with sickle cell disease in the United States. "
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