SIGNIFICANCE: Successful management of pediatric illness is leading to a growing population of children with special healthcare needs (CSHCN). The Maternal and Child Health Bureau defines CSHCN as “being at increased risk for chronic physical, developmental, behavioral, or emotional conditions requiring health services beyond those needed by healthy children.” Care for CSHCN is an important issue for today’s healthcare system as CSHCN account for over 15% of the pediatric population and for over 70% of healthcare costs. The American Academy of Pediatrics (AAP) recommends the family-centered medical home (FCMH) and high level care coordination to improve the care for CSHCN. And yet, according to the AAP’s Periodic Survey of Fellows, there continue to be significant deficiencies in the adherence to FCMH in the day-to-day care of CSHCN. In their survey, the AAP found that fewer than 50% of responding pediatricians integrate subspecialty care plans into their management of CSHCN, and fewer than 25%: (1) contact schools about a child's health and education; (2) meet with hospital discharge planning teams to assist in a child's transition back to the community; or (3) schedule time with a family to discuss the results of a visit to a subspecialist. The SCOPE program was developed to provide future pediatricians with “hands-on” training on elements of the FCMH and care coordination so vital to improving care for CSHCN.
EFFECTIVENESS: SCOPE has been studied as a prospective randomized controlled trial at Lucile Packard Children’s Hospital at Stanford University. SCOPE was associated with significant improvement in resident self-efficacy for patient-centered goal-setting with CSHCN.
Intervention Fidelity, Feasibility and Acceptance:
Over one-quarter of pediatric residents (n=22 out of 80, 27.5%) volunteered for SCOPE at Stanford University. All of intervention residents, faculty mentors and families wanted to continue participating in SCOPE after the 4-month study period. All residents responded that they would recommend SCOPE to other residents, faculty and CSHCN. In terms of the time commitment for SCOPE residents; 37.5% reported spending <1 hour/week on the program, 50% spent 1-5 hours, and 12.5% spent 6-10 hours. Overall, 70% communicated with their family at least monthly and 85% completed all Toolkit items.
Primary Outcome: Learner Self-Efficacy
SCOPE was associated with improvements in residents’ perceived self-efficacy in caring for CSHCN. Of the nine self-efficacy items surveyed on a 5-point Likert scale, the intervention group showed statistically significant improvement in establishing patient-centered goals of care (p=0.04) compared with controls. For the intervention residents, there were statistically significant retrospective pre- and post-intervention improvements in another five out of nine self-efficacy domains including resident's ability to: (1) understand a child with special needs within the context of their own home; (2) understand how a child with special needs might impact the lives of their family; (3) create a plan of care for medically complex patients; (4) help a family navigate the healthcare system; and (5) find community resources that might benefit a child with special needs.
Secondary Outcome: Patient Satisfaction
All participating families wanted to continue in SCOPE at the end of the 4-month program. Although there were no statistically significant results from family data, the authors found that: 100% of families reported that their SCOPE resident understood how medical, behavioral, or other health conditions affect their child and family’s day-to-day life, 57% had help with care coordination, and 100% rated their SCOPE resident as excellent when it came to “really listening to my opinions about my child’s care.” Generally, 25% of participating families were satisfied and 75% were very satisfied with the SCOPE program.
- To develop a longitudinal relationship with a child with special health care needs (CSHCN) and their family.
- To consider the family’s perspective in their child's medical care and the impact it has on the family's daily life.
- To apply a family’s concerns about their CSHCN to create goals for their care.
- To practice care coordination and healthcare advocacy for CSHCN.
- To identify the variety of healthcare providers that can help families of CSHCN.
A particular thanks goes to the SCOPE patients and their families and the Stanford Pediatric Residents without whom none of this would be possible.
None to report.
This research was supported by: the Health Research Institute and the NIH Clinical and Translational Science Award 1UL1 RR025744, the Stanford Center for Clinical and Translational Education and Research (Spectrum) and the Lucile Packard Foundation for Children's Health fellowship funding for principal investigator Jori Bogetz, MD; and, the Lucile Packard Foundation for Children's Health grant number 107974 funding for the SCOPE program materials and implementation, principal investigator Caroline Rassbach, MD.
Bogetz J, Gabhart J, Rassbach C, Sanders L, Mendoza F, Blankenburg R, Bergman D. A Randomized Controlled Pilot Curriculum to Improve Resident Education on the Care of Children with Special Health Care Needs. Poster presented at: Pediatric Academic Societies' Annual Meeting; May 2013; Washington, DC. http://dx.doi.org/10.1016/j.acap.2013.05.010
Bogetz J, Gabhart J, Rassbach C, Sanders L, Mendoza F, Blankenburg R, Bergman D. Stanford Care Optimization for Patients and Education (SCOPE): Improving the Care of Children With Special Healthcare Needs Through Medical Education. Poster presented at: LPCH Annual Research Day; April 2013; Stanford, CA.
Bogetz J, Gabhart J, Rassbach C, Sanders L, Mendoza F, Blankenburg R, Bergman D. SCOPE: A Randomized Controlled Pilot Curriculum to Improve Resident Education on the Care of Children with Special Health Care Needs. Poster presented at: Association of Pediatric Program Directors' Annual Meeting; April 2013; Nashville, TN. http://dx.doi.org/10.1016/j.acap.2013.05.010
Bogetz J, Rassbach C, Gabhart J, Bergman D, Blankenburg R. Improving the Care of Children With Special Healthcare Needs Through Medical Education. Presented at: AAMC Annual Meeting, MedEdPORTAL Poster Session; November 2012; San Francisco, CA.
Rassbach C, Bogetz J, Gabhart J, Bergman D, Blankenburg R. Improving Continuity of Care for Complex Patients in Inpatient and Outpatient Settings: An Innovative Resident Based Educational Model to Improve Healthcare Transitions. Presented at: Pediatric Hospital Medicine Conference; July 2012; Cincinnati, OH.
Bogetz J, Rassbach C, Gabh art J, Bergman D, Blankenburg R. The SCOPE Program: Improving the Care of Children With Special Needs Through Medical Education. Poster presented at: AAMC WGEA Regional Conference; March 2012; Asilomar, CA.
Gabhart J, Rassbach C, Bogetz J, Bergman D, Blankenburg R. The SCOPE Program: Improving the Care of Children With Special Needs Through Medical Education. Poster presented at: Innovations in Medical Education Conference, USC/Keck School of Medicine; February 2012; Pasadena, CA.
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