Medically Complex Children: Family Experience, Impact, and Healthcare Quality

Background: Children with medical complexity (CMC) pose a unique challenge to systems because of the range of complexities they present, their need for more comprehensive care, and their greater impact on family caregivers. Innovative systems of care that include social work and other social supports may increase the quality of care for medically complex children. Caregivers of CMC are especially vulnerable to anxiety, depression, financial strain and loss of work, marital discord, isolation, relationship problems, issues of physical strain (including, pain, premature loss of function, and even premature death), and feelings of stress and overwhelm.

Purpose: a primary care model expected to offer more effective, coordinated, and comprehensive care for children with medical complexity and their families enrolled children in a randomized controlled trial (RCT). Expected outcomes include increased family satisfaction and increased quality of life for the patient/child and their family. The purpose of analysis was to review the differences between intervention and control families of children with medical complexity in family satisfaction and quality of life at 12 months, and to give an overview parent experience from qualitative interviews conducted with 40 parents.

Methods: Of 280 families enrolled, 152 completed instruments at baseline and 12 months (42% Spanish/58% English). Control group continued in usual care (with their current primary care physician). Intervention group was enrolled in an innovative model of primary care that included social work access as well as other social support services. Expected outcomes included increase in family satisfaction (measured with the CAHPS Child Primary Care instrument and qualitative interview), and increase in family quality of life (measured with the Peds QL Impact on Family Module and qualitative interview). Qualitative interviews were conducted at baseline with 20 Spanish-speaking and 20 English-speaking families and are currently being analyzed.

Results: At Baseline to twelve months no statistically significant change occurred between treatment and control groups in the eight domains of the PedsQL Family Impact Module 2.0 (physical functioning, emotional functioning, social functioning, cognitive functioning, communication, worry, daily activities, and family functioning). However, statistically significant differences were seen between groups on the CAHPS (p<.03). Qualitative analysis is pending, but initial review shows interviews will reveal robust parent experience.

Conclusions and Implications: Although the results from the PedsQL Family Impact Module 2.0 showed no significant changes in any domain, results do show differences, with treatment families showing greater changes toward higher quality of life. Although the overall study attrition rate was low (<5%), many families declined follow-up to complete CAHPS and PedsQL surveys. Further studies are needed to know if this limitation might have contributed to the inability to show significant changes. The currently occurring analysis of the qualitative interviews conducted as part of this study will reveal more about impact on family and caregiver experience.