Health Outcomes in Children with Complex Chronic Conditions

Rodday and Parsons Spotlight

Susan Parsons & Angie Rodday and a conceptual model of their study

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Compared with healthy children, those with severe chronic health conditions are more likely to experience acute events that lead to unscheduled healthcare utilization. In addition, families and children may experience negative effects on family functioning and health-related quality of life (HRQL). HRQL is a multidimensional construct, incorporating many areas of functioning, such as physical, emotional, and social. HRQL can be used either as an outcome or predictor of other outcomes of interest, including clinical events and healthcare utilization.

Using two samples of children, those with respiratory insufficiency due to underlying muscular or neuromuscular disorders, and those undergoing hematopoietic stem cell transplant (HSCT), Angie Mae Rodday, MS, a PhD candidate in the Clinical & Translational Science program, and her mentor, Susan K Parsons, MD, MRP are exploring health outcomes in these seriously ill children.

Angie’s dissertation focuses on three projects related to this topic. Among the sample of children with respiratory insufficiency, she hope to determine whether HRQL data is predictive of future healthcare utilization after controlling for other factors (eg, demographic, clinical). Healthcare utilization in this group can be very expensive, with intensive care unit admissions costing $13,000 per day. Determining a way to predict future utilization can hopefully lead to interventions that will decrease avoidable utilization. Also within this sample, Angie with use a newly created measure to assess physical functioning.

The prior research conducted by this team showed that current measures of physical functioning designed for healthier populations focused on areas of functioning that are not applicable to children with severe neuromuscular disorders, such as questions about climbing and exercising. To address this challenge, they created new measures that include questions about lower levels of physical functioning (eg, getting out of bed) that are more relevant to this population.

The final project looks at children undergoing hematopoietic stem cell transplant (HSCT) and their families. HSCT offers potentially life-saving treatment for children with disorders of the bone marrow, immune system, and metabolism. However, HSCT can be physically and psychologically taxing for the children and their parents. To assess this, parents completed questionnaires about the impact of the child’s illness on the family as well as other questionnaires about HRQL. Angie will use structural equation modeling (see Figure for conceptual model) to assess whether factors relating to social support, knowledge and beliefs, and coping are associated with the impact of the HSCT on family. These findings could then be used to target interventions to reduce the impact on the family.

The goal of all three of these projects is to better understand the health outcomes in children with severe chronic illness and to hopefully decrease the burden on these children and their families, improve health outcomes, and improve quality of care.

Angie is supported by a Pre-Doctoral Fellowship in Health Outcomes from the Pharmaceutical Research and Manufacturers of America Foundation (PhRMA) for which Dr. Parsons is her mentor.

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