OBJECTIVE: To describe factors that influence parent-clinician partnerships in information exchange and shared decision making (SDM) when children with special health care needs are referred to subspecialists. METHODS: We conducted focus groups with parents of children with special health care needs and pediatric primary care and subspecialty clinicians about how to include parents as partners in information exchange and SDM. Five parent and 5 clinician groups were held to identify themes to inform the development of interventions to promote parent partnerships; evaluate a prototype referral care plan and related parent supports as one example of a partnership tool; and compare the views of parents and clinicians. We used investigator triangulation and member checking to improve validity. RESULTS: Nineteen parents and 23 clinicians participated. Parents discussed partnerships more easily than clinicians did, though clinicians offered more ideas as sessions progressed. Parents and clinicians agreed on the importance of 3-way communication and valued primary care involvement in all stages of referral and consultation. SDM was seen by all as important; clinicians cited difficulties inherent in discussing unclear options, while parents cited insufficient information as a barrier to understanding. Use of a brief referral care plan, with parent coaching, was embraced by all parents and most clinicians. Clinicians cited time pressures and interference with work flow as potential barriers to its use. CONCLUSIONS: Parents and clinicians endorse partnership in referrals, though relatively greater enthusiasm from parents may signal the need for work in implementing this partnership. Use of a care plan to support parent engagement appears promising as a partnership tool. Copyright © 2013 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

OBJECTIVE: The Medical Home is a clinical practice concept that sets new standards for pediatric primary care. This study describes the development and validation of a tool to measure the Medical Home. METHODOLOGY: The Medical Home Index (MHI) consists of 25 themes arranged among 6 domains of primary care office activity. A national panel of experts on the Medical Home reviewed a prototype of the instrument. Pediatric primary care offices completed the MHI and participated in 90-minute on-site interviews with two of the authors (J.W.M., K.S.). The study examined interrater reliability between the 2 project staff and between the practices and project staff and the internal consistency of MHI domains and themes. RESULTS: On a 100-point scale, 43 practices demonstrated a range of MHI summary scores from 18.9 to 75.4, with a mean of 43.9. Kappa coefficients of interrater reliability between two Center for Medical Home Improvement project staff were above.50 for all 25 themes. Kappa scores comparing each staff member and the practice sites' self-assessment found 80% of the themes at.65 or better for one interviewer (J.W.M.) and 60% of the themes at.65 or better for the second interviewer (K.S.). Intraclass correlation coefficients between the summary scores of the interviewers were.98 and between the scores of the two interviewers and the scores of the practices was.97. The internal consistency reliability standardized alpha coefficients across the 6 domains of the MHI ranged from.81 to.91, and the overall standardized alpha coefficient was.96. CONCLUSIONS: In the sample of practices studied, the MHI was an internally consistent instrument with acceptable reliability and validity for pediatric primary care practices to assess their implementation of the Medical Home concept. Further work is needed to study its correlation with other process and outcome measures and its performance in a wider range of practices.