Elizabeth S Barnert1,2, Ryan J Coller3, Bergen B Nelson4,2,5, Lindsey R Thompson4,2, Thomas S Klitzner4,2, Moira Szilagyi4,2, Abigail M Breck4,2, Paul J Chung4,2,6,7. 1. Department of Pediatrics, David Geffen School of Medicine, ebarnert@mednet.ucla.edu. 2. Children's Discovery and Innovation Institute, Los Angeles Mattel Children's Hospital, and. 3. Department of Pediatrics, University of Wisconsin-Madison, Madison, Wisconsin. 4. Department of Pediatrics, David Geffen School of Medicine. 5. Children's Hospital of Richmond at Virginia Commonwealth University, Richmond, Virginia; and. 6. Department of Health Policy and Management, Jonathan and Karin Fielding School of Public Health, University of California, Los Angeles, Los Angeles, California. 7. RAND Health, RAND Corporation, Santa Monica, California.
Abstract
BACKGROUND AND OBJECTIVES: Defining and measuring health for children with medical complexity (CMC) is poorly understood. We engaged a diverse national sample of stakeholder experts to generate and then synthesize a comprehensive list of health outcomes for CMC. METHODS: With national snowball sampling of CMC caregiver, advocate, provider, researcher, and policy or health systems experts, we identified 182 invitees for group concept mapping (GCM), a rigorous mixed-methods approach. Respondents (n = 125) first completed Internet-based idea generation by providing unlimited short, free-text responses to the focus prompt, "A healthy life for a child or youth with medical complexity includes: ___." The resulting 707 statements were reduced to 77 unique ideas. Participants sorted the ideas into clusters based on conceptual similarity and rated items on perceived importance and measurement feasibility. Responses were analyzed and mapped via GCM software. RESULTS: The cluster map best fitting the data had 10 outcome domains: (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. Seventeen outcomes representing 8 of the 10 domains were rated as both important and feasible to measure ("go zone"). CONCLUSIONS: GCM identified a rich set of CMC outcome domains. Go-zone items provide an opportunity to test and implement measures that align with a broad view of health for CMC and potentially all children.
BACKGROUND AND OBJECTIVES: Defining and measuring health for children with medical complexity (CMC) is poorly understood. We engaged a diverse national sample of stakeholder experts to generate and then synthesize a comprehensive list of health outcomes for CMC. METHODS: With national snowball sampling of CMC caregiver, advocate, provider, researcher, and policy or health systems experts, we identified 182 invitees for group concept mapping (GCM), a rigorous mixed-methods approach. Respondents (n = 125) first completed Internet-based idea generation by providing unlimited short, free-text responses to the focus prompt, "A healthy life for a child or youth with medical complexity includes: ___." The resulting 707 statements were reduced to 77 unique ideas. Participants sorted the ideas into clusters based on conceptual similarity and rated items on perceived importance and measurement feasibility. Responses were analyzed and mapped via GCM software. RESULTS: The cluster map best fitting the data had 10 outcome domains: (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. Seventeen outcomes representing 8 of the 10 domains were rated as both important and feasible to measure ("go zone"). CONCLUSIONS: GCM identified a rich set of CMC outcome domains. Go-zone items provide an opportunity to test and implement measures that align with a broad view of health for CMC and potentially all children.
Authors: Sydney Breneol; Janet A Curran; Marilyn Macdonald; William Montelpare; Samuel A Stewart; Ruth Martin-Misener; Jocelyn Vine Journal: JMIR Res Protoc Date: 2022-04-06
Authors: Julia A Heneghan; Sarah A Sobotka; Madhura Hallman; Neethi Pinto; Elizabeth Y Killien; Kathryn Palumbo; Sinead Murphy Salem; Kilby Mann; Barbara Smith; Rebecca Steuart; Manzilat Akande; Robert J Graham Journal: Front Pediatr Date: 2021-07-02 Impact factor: 3.418