Measuring Patient and Family Experiences of Health Care for Children

BACKGROUND: The Institute of Medicine considers patient centeredness a core dimension of quality. Several patient/family surveys exist to assess pediatric health care. The Children's Health Insurance Program Reauthorization Act mandates strengthening quality measurement for children, including for patient/family experience of care. OBJECTIVES: The aim of this study was to determine what instruments exist for measuring patient/family experience of pediatric health care and which should be included in the core measurement set for assessing Medicaid and the Children's Health Insurance Program (CHIP) programs; to identify gaps in measurement; and to provide recommendations for measure development. METHODS: We developed a conceptual framework for measuring patient/family experience of care. We conducted a review of national measure clearinghouses and of the literature to assess validity, reliability, and feasibility of existing measures, and how these measures address the conceptual framework. RESULTS: We found valid and reliable instruments for measuring patient/family experience of care include the Consumer Assessment of Healthcare Providers and Systems (CAHPS (R)) instruments, Promoting Healthy Development Survey (PHDS), Young Adult Health Care Survey (YAHCS), and the National Research Corporation Picker Pediatric Inpatient Survey (NRC Picker). We identified the need for matching patients with providers and groups as a barrier for widespread use of the CAHPS (R) pediatric clinician & group instrument. CONCLUSIONS: We recommended to the National Advisory Council for Healthcare Research and Quality Subcommittee on Children's Healthcare Quality Measures for Medicaid and Child Health Insurance Programs (SNAC) the CAHPS (R) Child Medicaid 4.0 and pediatric Clinician & Group Survey for inclusion in the initial recommended list of core measures for voluntary use by Medicaid and CHIP. The Clinician and Group Survey was not included in the list posted for public comment due to concerns at that time (December 2009) about feasibility. We also recommended that development of a child version of the CAHPS (R) behavioral and mental health survey now used in the adult population and of a pediatric hospital CAHPS (R) measure be considered high priorities for development in the next phase of Children's Health Insurance Program Reauthorization Act measurement activity. This phase should also explore methods to increase response rates and lower costs of obtaining consumer feedback.