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.

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Available from: Julie Panepinto, Dec 22, 2014
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    • "Indeed , we reported earlier that up to 37.5 % of participants' SCD-affected children had mild-to-severe cognitive deficits, and there was a significant effect of SCD on executive functions and attention (Ruffieux et al. 2013). Similar to our findings, 24.3 % of caregivers in the USA missed two or more days of work per 3 days-hospital admission of their children (Moskowitz et al. 2007), and the morbidity of a painful event continued after discharge from hospital (Brandow et al. 2009;Moskowitz et al. 2007). Thus, poor health status of children with SCD could also reduce caregivers' employability and worsened the socioeconomic burden on families. "
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    ABSTRACT: The chronicity of Sickle Cell Disease (SCD) could impair the quality of life of caregivers. We performed a quantitative study to assess various indices of psychosocial burden on Cameroonian parents (N = 130) with at least one living SCD-affected child. Demographic and medical information were obtained from the participants and the review of the patients' medical records. The survey instrument included a 38-item stress factors scale using Likert-type statements, evaluating general perceptions of stress and five main specific stressors: disease factors (clinical severity), hospital factors, financial factors, family factors (life/dynamic) and SCD-child factors (perceived quality of life). The items pertaining to burden involved four response options with increasing severity: 0, 1, 2 or 3. Descriptive statistics and non-parametric tests were used for analysis. Participants were typically aged 38 years, urban dwellers (89 %), female (80 %), married (60.2 %), employed (61.7 %) and had secondary/tertiary education (82 %). Median age of SCD-affected children was 9 years. The median age at diagnosis of SCD was 6 months; 47.8 % had more than 3 painful crises per year. The majority of participants (88.3 %) experienced moderate to severe difficulty coping with SCD. On a 0-3 scale, median score of SCD clinical severity was the major factor to undermine the coping ability of parents (2.2); vaso-occlusive painful events (>3 per year) was the disease-related stressor that most impacted their coping ability. The family life dynamic was the least stressful (0.7). Unemployment affected all the stressors' categories. Stressors scores also increased with female, single, low education level, age of SCD-affected children or more than 3 children in the family. In Cameroon, there is an urgent need to implement practices that ensure affordable access to health-care and activities that would reduce SCD morbidity.
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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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