Objective: To present a conceptual framework for evaluating quality of care for children and adolescents, summarize the key issues related to developing measures to assess pediatric quality of care, examine some existing measures, and present evidence about their current level of performance.
Principal findings: Assessing the quality of care for children poses many challenges not encountered when making these measurements in the adult population. Children and adolescents (from this point forward referred to collectively as children unless differentiation is necessary) differ from adults in two clinically important ways (Jameson and Wehr 1993): (1) their normal developmental trajectory is characterized by change, and (2) they have differential morbidity. These factors contribute to the limitations encountered when developing measures to assess the quality of care for children. The movement of a child through the various stages of development makes it difficult to establish what constitutes a "normal" outcome and by extension what constitutes a poor outcome. Additionally, salient developmental outcomes that result from poor quality of care may not be observed for several years. This implies that poor outcomes may be observed when the child is receiving care from a delivery system other than the one that provided the low-quality care. Attributing the suboptimal outcome to the new delivery system would be inappropriate. Differential morbidity refers to the fact that the type, prevalence, and severity of illness experienced by children is measurably different from that observed in adults. Most children experience numerous self-limited illness of mild severity. A minority of children suffer from markedly more severe diseases. Thus, condition-specific measures in children are problematic to implement for routine assessments because of the extremely low incidence and prevalence of most severe pediatric diseases (Halfon 1996). However, children with these conditions are potentially the segment of the pediatric population that can be most affected by variations in the quality of care. Improving the care provided to these children is likely to have the largest impact on quality of life and longevity. The low prevalence of most severe pediatric diseases also makes it difficult to evaluate the effectiveness of new treatment modalities; multi-center trials or long enrollment periods are usually required to obtain a large enough patient sample to conduct the necessary randomized controlled trials or cohort studies. Another challenge encountered when measuring quality of care for children is that, in most cases, they depend on adults to both obtain care and to report on the outcomes of that care. Parents and their children may have different perceptions of what defines health or have different levels of satisfaction with the care they receive. Children, particularly those with special needs, also depend on a broad range of services including the medical system, community intervention programs, social programs, and school-based services. Dependency on these various services adds to the difficulty of measuring and appropriately attributing health outcomes observed in children to a particular service delivery entity. Adolescents also depend on adults for access to some of their care; however, they have special needs related to confidentiality and parent-child information sharing. Adolescents commonly seek care at facilities, such as school-based clinics, that allow them to obtain confidential care. These facilities usually provide out-of-health plan care for these children, which raises special issues related to information availability for quality assessments and for assessing utilization patterns in this population. If the source of poor health outcomes is not known, quality improvement is not possible. The many challenges faced when constructing pediatric (this term will be used to refer to both children and adolescents) quality of care measures have resulted in few of these instruments being developed specifically for children. Most of the measures developed to date have either a very limited pediatric component or still require the process or outcome validation step. Although several practice guidelines and indicators of quality have been constructed, a conceptual framework to guide the development of such tools for quality assessment in the pediatric population is lacking.
Conclusions: Pediatric health services researchers and the organizations that fund this work need to focus on developing a set of quality assessment tools that will address several challenging issues. Working within the context of the conceptual framework presented, we draw several conclusions related to issues that should be considered in developing quality of care measures for children.