JMIR Publications

ABSTRACT

Background:

Care coordination is challenging but crucial for children with medical complexity (CMC). Technology-based solutions are increasingly prevalent but little is known about how to successfully deploy them in the care of CMC.

Objective:

To assess the feasibility and acceptability of GoalKeeper (GK), an Internet-based system for eliciting and monitoring family-centered goals for CMC and to identify barriers and facilitators to implementation.

Methods:

We used the Consolidated Framework for Implementation Research (CFIR) to explore barriers and facilitators to implementation of GK as part of a clinical trial of GK in ambulatory clinics at a children’s hospital (NCT03620071). The study was conducted in three phases: pre-implementation, implementation (trial), and post-implementation. For the trial, provider eligibility: MD, DO, NP at participating clinics. Parent eligibility: 18 years, English-speaking, home Internet access, with a CMC <12 years. All participants used GK in an initial clinic visit and for 3 months after. We conducted pre-implementation focus groups and post-implementation semi-structured exit interviews using the CFIR interview guide. Participant exit surveys assessed GK feasibility and acceptability on a 5-point Likert scale. For each interview, 3 independent coders used content analysis and serial coding reviews based on the CFIR qualitative analytic plan and assigned quantitative ratings to each CFIR construct (-2: strong barrier to +2: strong facilitator).

Results:

Pre-implementation focus groups included 2 parents (1 male, 1 female) and 3 providers (1 complex care, 1 clinical informatics, and 1 neurology). From focus groups, we developed 3 implementation strategies: education (parents: 5-min demo, providers: 30-min tutorial and 5-min video on use in a clinic visit, both: instructional manual), tech support (in-person, virtual), and automated email reminders for parents. For implementation (4/1/19-12/21/20), we enrolled 11 providers (7 female, 5 complex care) and 35 parents (mean age 38.3 years (SD 7.8), 80% female, 49% Caucasian and 46% Hispanic, 86%  some college). One parent-provider pair did not use GK in the clinic visit and few used GK after the visit. In 18 parent and 9 provider exit interviews, key facilitators were: parents and providers value shared goal-setting, GK’s Internet-accessibility and email reminders (parents), and GK’s ability to set long-term goals and use at the end of visits (providers). A key barrier was GK’s lack of integration into the electronic health record (EHR) or patient portal. Most parents (13/19) and providers (6/9) would recommend GK to their peers.

Conclusions:

Family-centered technologies like GK are feasible and acceptable for care of CMC, but sustained use depends on integration into EHRs. Clinical Trial: Clinicaltrials.gov: NCT03620071