This systematic review of quality domains will be relevant and useful to those who are developing and using performance measurement and improvement frameworks for adult and child populations within or across the health, social service or education sectors.

Conceptual, definitional and terminology issues affect population-based research on children with NDD/D. Ascertainment methods can use diagnostic as well as functional information. Diagnostic information alone is likely to under-represent the complexity and needs of children with NDD/D and their families.

Concern about the length of time that children, young people, and families may have to wait to access assessment, diagnostic, interventional, therapeutic, and supportive child developmental and rehabilitation (CDR) services is widespread, but adequate data collection and research on this issue remain limited. We review key concepts and issues relevant to waiting for CDR services from the published literature, a national workshop devoted to this topic, and international experience. We conclude that gaps in data, evidence, and consensus challenge our ability to address the issue of waiting for CDR services in a systematic way. A program of research coupled with actions based on consensus-building is required. Research priorities include acquiring evidence of the appropriateness and effectiveness of different models of intervention and rehabilitation services, and documenting the experience and expectations of waiting families. Consensus-building processes are critical to identify, categorize, and prioritize 'sentinel' components of CDR service pathways: (1) to reduce the inherent complexity of the field; (2) to create benchmarks for waiting for these respective services; and (3) to develop definitions for wait-time subcomponents in CDR services. Collection of accurate and replicable data on wait times for CDR services can be used to document baseline realities, to monitor and improve system performance, and to conduct comparative and analytic research in the field of CDR services.Wait times are an important barrier to access to publicly provided medical and other health-related services, and are of concern to service users, to providers, and to policy-makers.

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