Randomized Controlled Trial of Health Coaching for Parents of Children with Medical Complexity


      Background and Objective

      Parents of children with medical complexity (CMCs) struggle with managing their children's care needs. Health coaching provides patients with tools to take ownership of their care. We sought to assess the impact of health coaching for parents of CMCs on activation, child's health related quality of life (HRQL), and utilization.


      Parents of CMCs receiving primary care at two academic primary care practices were randomized to receive 3-6 months of coaching from a trained health coach (n=54) or usual care (n=71). Parents were surveyed on activation, HRQL, and experience of care at baseline and the end of the study period. Markers of utilization (missed visit rates, ED, and admissions) were measured for 12 months prior to and after enrollment. Parametric, non-parametric, and Poisson regression were used to assess baseline differences in characteristics and average pre-post differences between the groups.


      At baseline, activation and rating of patient experience were high in both groups, while HRQL was one standard deviation below the population-based mean. Both groups had slight increases in HRQL and P-PAM without significant differences between groups. ED visits declined significantly more in the intervention group than the usual care group (0.68 visits, (-0.03, -1.32) p=0.04); there were non-significant differences in changes in other utilization metrics.


      Health coaching was associated with a decrease in ED use but not in changes in activation, patient experience, or HRQL. More inquiry is needed to understand whether health coaching is an effective modality for improving care for children with medical complexity.



      CMC (Children with medical complexity), HRQL (Health related quality of life), P-PAM (Parent Patient Activation Measure), PGH (Pediatric Global Health), ED (Emergency department), TIDieR (Template for Intervention Description and Replication)
      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Academic Pediatrics
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


      1. Berry BJG, Hall M, Neff J, et al. Children With Medical Complexity And Medicaid: Spending And Cost Savings.:2199-2206.

        • Neff JM
        • Sharp VL
        • Muldoon J
        • Graham J
        • Myers K
        Profile of Medical Charges for Children by Health Status Group and Severity Level in a Washington State Health Plan.
        Health Services Research. 2004; 39: 73-89
        • Cohen E
        • Berry JG
        • Camacho X
        • Anderson G
        • Wodchis W
        • Guttmann A
        Patterns and Costs of Health Care Use of Children With Medical Complexity.
        Pediatrics. 2012; 130: e1463-e1470
        • Kuo DZ
        • Melguizo-Castro M
        • Goudie A
        • Nick TG
        • Robbins JM
        • Casey PH
        Variation in Child Health Care Utilization by Medical Complexity.
        Maternal and Child Health Journal. Published online. 2014; : 40-48
        • Simon TD
        • Berry J
        • Feudtner C
        • et al.
        Children with complex chronic conditions in inpatient hospital settings in the United States.
        Pediatrics. 2010; 126: 647-655
        • Thomson J
        • Shah SS
        • Simmons JM
        • et al.
        Financial and social hardships in families of children with medical complexity.
        Journal of Pediatrics. 2016; 172 (e1): 187-193
        • Parish SL
        • Shattuck PT
        • Rose RA
        Financial burden of raising CSHCN: association with state policy choices.
        Pediatrics. 2009; 124 (Suppl): S435-S442
        • Edwards JD
        • Panitch HB
        • Constantinescu A
        • Miller RL
        • Stone PW
        Survey of financial burden of families in the U.S. with children using home mechanical ventilation.
        Pediatric Pulmonology. 2018; 53: 108-116
        • Thyen U
        • Kuhlthau K
        • Perrin JM
        Employment, child care, and mental health of mothers caring for children assisted by technology.
        Pediatrics. 1999; 103 (Pt 1): 1235-1242
        • Yu JA
        • Henderson C
        • Cook S
        • Ray K
        Family Caregivers of Children With Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination.
        Academic Pediatrics. 2020; 20: 1116-1123
        • Coquillette M
        • Cox JE
        • Cheek S
        • Webster RA
        Social Work Services Utilization by Children with Medical Complexity.
        Maternal and Child Health Journal. 2015; 19: 2707-2713
        • Coller RJ
        • Nelson BB
        • Sklansky DJ
        • et al.
        Preventing Hospitalizations in Children With Medical Complexity: A Systematic Review.
        Pediatrics. 2014; 134: e1628-e1647
        • Nelson BB
        • Coller RJ
        • Saenz AA
        • et al.
        How Avoidable are Hospitalizations for Children With Medical Complexity?.
        Academic Pediatrics. 2016; 16 (Understanding Parent Perspectives): 579-586
        • Samuels-Kalow M
        • Peltz A
        • Rodean J
        • et al.
        Predicting Low Resource Intensity Emergency Department Visits in Children.
        Academic Pediatrics. 2018; 2018 (ePub ahead of print)
        • Berry JG
        • Hall DE
        • Kuo DZ
        • et al.
        Hospital utilization and characteristics of patients experiencing recurrent readmissions within children's hospitals.
        JAMA: the journal of the American Medical Association. 2011; 305: 682-690
        • Ghorob A
        Health coaching: teaching patients to fish.
        Fam Pract Manag. 2013; 20: 40-42
        • Hibbard JH
        • Greene J
        What the evidence shows about patient activation: Better health outcomes and care experiences; fewer data on costs.
        Health Affairs. 2013; 32: 207-214
        • Rice KG
        • Jumamil RB
        • Jabour SM
        • Cheng JK
        Role of Health Coaches in Pediatric Weight Management.
        Clinical Pediatrics. 2017; 56: 162-170
        • Bartels SJ
        • Pratt SI
        • Aschbrenner KA
        • et al.
        Pragmatic Replication Trial of Health Promotion Coaching for Obesity in Serious Mental Illness and Maintenance of Outcomes.
        American Journal of Psychiatry. 2015; 172: 344-352
        • Thom DH
        • Hessler D
        • Willard-Grace R
        • et al.
        Health coaching by medical assistants improves patients’ chronic care experience.
        Am J Manag Care. 2015; 21: 685-691
        • Thom DH
        • Ghorob A
        • Hessler D
        • De Vore D
        • Chen E
        • Bodenheimer TA
        Impact of Peer Health Coaching on Glycemic Control in Low-Income Patients With Diabetes: A Randomized Controlled Trial.
        The Annals of Family Medicine. 2013; 11: 137-144
        • Thom DH
        • Hessler D
        • Willard-Grace R
        • et al.
        Does health coaching change patients’ trust in their primary care provider?.
        Patient Education and Counseling. 2014; 96: 135-138
        • Willard-Grace R
        • Chen EH
        • Hessler D
        • et al.
        Health Coaching by Medical Assistants to Improve Control of Diabetes, Hypertension, and Hyperlipidemia in Low-Income Patients: A Randomized Controlled Trial.
        The Annals of Family Medicine. 2015; 13: 130-138
        • Coker TR
        • Chacon S
        • Elliott MN
        • et al.
        A Parent Coach Model for Well-Child Care Among Low-Income Children: A Randomized Controlled Trial.
        PEDIATRICS. 2016; 137 (e20153013-e20153013)
      2. Insignia Health. Patient Activation Measure. Accessed March 22, 2021.

        • Forrest CB
        • Bevans KB
        • Pratiwadi R
        • et al.
        Development of the PROMIS® pediatric global health (PGH-7) measure.
        Quality of Life Research. 2014; 23: 1221-1231
        • Children's Health Care Quality Measures Core Set Technical Assistance and Analytic Support Program
        Guidance for Conducting the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) 5.0H Child Survey.
        Technical Assistance Brief. 2018; (Published 2012. Accessed April 25)
        • Feudtner C
        • Feinstein JA
        • Zhong W
        • Hall M
        • Dai D
        Pediatric complex chronic conditions classification system\nversion 2: updated for ICD-10 and complex medical technology\ndependence and transplantation.
        BMC Pediatr. 2014; 14: 199
        • Simon TD
        • Whitlock KB
        • Haaland W
        • et al.
        Effectiveness of a comprehensive case management service for children with medical complexity.
        Pediatrics. 2017; 140
        • Hoffmann TC
        • Glasziou PP
        • Boutron I
        • et al.
        Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide.
        BMJ. 2014; 348: g1687
        • McConnell M
        • Zhou A
        • Martin M
        • et al.
        Protocol for a randomized controlled trial evaluating the impact of the Nurse-Family Partnership's home visiting program in South Carolina on maternal and child health outcomes.
        Trials. 2020 Dec 4; 21: 997