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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    • "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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    ABSTRACT: Caring for a child with a chronic condition, such as sickle cell disease, can have a significant impact on parents and families. In order to provide comprehensive care and support to these families, psychometrically sound instruments are needed as an initial step in measuring the impact of chronic diseases on parents and families. We sought to evaluate the psychometric properties of the PedsQL Family Impact Module in populations of children with and without sickle cell disease. In addition, we sought to determine the correlation between parent's well being and their proxy report of their child's health-related quality of life (HRQL). We conducted a cross-sectional study of parents of children with and without sickle cell disease who presented to an urban hospital-based sickle cell disease clinic and an urban primary care clinic. We assessed the HRQL and family functioning of both groups of parents utilizing the PedsQL Family Impact Module. The reliability, validity and factor structure of the instrument were determined and scores from the instrument were correlated with scores from parent-proxy report of their child's HRQL using the PedsQL 4.0 Generic Core Scales. Parents of 170 children completed the module (97 parents of children with sickle cell disease and 73 parents of children without sickle cell disease). The Family Impact Module had high ceiling effects but was reliable (Cronbach's alpha > 0.80 in all scales). The empirical factor structure was generally consistent with the theoretical factor structure and supported construct validity. The Family Impact Module discriminated between parents of children with severe sickle cell disease from parents of children with mild disease or no disease in the areas of communication and worry. There were no significant differences across any of the subscales between parents of children with mild sickle cell disease and those with no disease. Parents with higher scores, representing better HRQL and family functioning, generally reported higher HRQL scores for their children. The PedsQL Family Impact module was reliable, however it displayed large ceiling effects and did not discriminate well between parents of children with and without sickle cell disease. Future research to evaluate the psychometric properties of the Family Impact Module for parents of healthy children may be helpful.
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    ABSTRACT: New epidemiological findings recast pain in sickle-cell disease (SCD) as being more often a chronic manifestation than was previously thought, although acute pain is still the hallmark of the disease. SCD pain intensity, the number of painful locations, and the frequency of hospitalizations due to SCD pain may worsen with age. In adults and even in children, the quantity and severity of SCD pain may be vastly underestimated, because most of the "iceberg" of SCD pain is "submerged" at home, and only the tip of the iceberg is seen by health care providers when acute SCD care is rendered in emergency rooms and hospitals. Implications of this "iceberg phenomenon" are significant for clinicians, researchers, employers, policy makers, and the public. Nevertheless, both emergency room and hospital utilization for SCD pain remain prevalent. Often, utilization recurs early, perhaps emblematic of poor acute pain management. New data show the protean impacts of SCD pain on health-related quality of life, sleep, and psychological and social health. The relationship of the severity of SCD pain to the severity of underlying sickle vasculopathy is unclear, but epidemiologic evidence and patient descriptors suggest a temporal evolution of pain mechanisms. At first, increasingly worse nociceptive pain from vaso-occlusion and local lesions may evolve over the first two decades of life. Then, in the third and following decades, central neuropathic pain may also evolve due to past and continuing nociceptive stimuli. New findings confirm environmental contributors to SCD pain, including seasonal (colder) temperatures, barometric pressure, and wind speed.
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