The Future of Measuring Health Outcomes for Children With Medical Complexity

Children with medical complexity are characterized as those with significant and/or multiple chronic health conditions, functional limitations, and substantial health care use¹ who are “most likely to manifest adverse outcomes when health and/or service systems fail.”² As such, the health and well-being of these children have been described as “sentinel indicators of the effectiveness of the systems on which they depend.”² 

In this month’s issue of Pediatrics, Barnert et al³ report on their findings of potential health outcomes for use in clinical and research efforts directed at children with medical complexity. With this elegant work, the authors used group concept mapping and a rigorous and structured mixed-methods approach among a diverse and nationally representative group of 182 caregivers, advocates, providers, researchers, and policy or health systems experts on children with medical complexity ascertained via snowball sampling. A total of 879 individual ideas were distilled into a comprehensive list of 77 potential health outcomes. Potential health outcomes were then mapped into 10 domains, including (1) basic needs, (2) inclusive education, (3) child social integration, (4) current child health-related quality of life, (5) long-term child and family self-sufficiency, (6) family social integration, (7) community system supports, (8) health care system supports, (9) a high-quality patient-centered medical home, and (10) family-centered care. Of the 77 potential health outcomes, 17 were rated as both important and feasible to measure in 8 of the 10 domains (representing critical outcome measures for use in future clinical and research efforts). Another 24 potential health outcomes were rated as important but not feasible to measure (representing potential outcome measures for future measure development work).

Ongoing work in the field of pediatric complex care and children with medical complexity has accelerated over the past decade.⁴ Early milestones in the field of pediatric complex care have included documentation of the increasing numbers of children with medical complexity in the inpatient setting in the United States during the previous decade^5,6 (by using the then-controversial approach of using complex chronic condition codes⁷), as well as the establishment of a definitional framework and proposal of a clinical and research agenda for these children.¹ Subsequent work has been focused on refining the identification of children with medical complexity by using administrative data and/or survey data.⁸ Additional lines of inquiry have been undertaken to describe the substantial and varying use and costs associated with inpatient care for children with medical complexity.^9,–11 In the meantime, clinical programs for children with medical complexity have proliferated.¹² Evaluation of clinical programs has evolved from designs of convenience such as pre- and postapproaches to more sophisticated designs such as randomized controlled trials.^13,14 However, key challenges have included measurements of less traditional but critical outcome measures such as family functioning and parent mental health compared with the more easily obtained metrics of use and cost.¹⁵ 

Enter Barnert et al,³ who have used the expertise of the field to provide clear, feasible suggestions for the measurement of health outcomes for children with medical complexity. They heard the call for comprehensive outcome measures in pediatric complex care⁴ and have responded with a framework of measurable outcomes for clinical and research efforts. They are asking us to move beyond use and cost and to focus on patient- and family-centered outcomes. They are asking us to move beyond our hospital and clinic walls to optimize the quality of life for children with medical complexity. Barnert et al³ have paved the way for next steps over the next decade in the field of pediatric complex care.