Novel Web-Based Technology to Promote Goal-Setting in Complex Chronic Illness: Randomized Controlled Trial

Shared goal-setting is a common feature of quality guidelines to improve care quality for children with medical complexity, but few studies have examined the efficacy of interventions designed to improve goal-setting.

This study aims to evaluate a novel internet-based tool to promote shared goal-setting (GoalKeeper) in the care of children with medical complexity.

We conducted a randomized stepped-wedge trial (intervention vs usual care) between April 1, 2019 and March 21, 2021, at primary and subspecialty care clinics at an academic medical center, including 11 medical providers (medical doctor, doctor of osteopathic medicine, or nurse practitioner). Adult parents of children with medical complexity were eligible if they were English-speaking, with home internet access, and with children with medical complexity aged younger than 12 years. Participants were clustered by provider, with providers crossing over from control to intervention at different stages. The assignment of timing for crossover was random. Control group participants received usual care without any additional interventions. Intervention group participants received a novel web-based tool called GoalKeeper for initial use during the clinic visit and subsequent continued use after the clinic visit. GoalKeeper was co-designed by parents, providers, and computer scientists to include 2 modules, meant to be used by both the parent and medical provider for each child: (1) goal elicitation, used synchronously during a clinic visit; (2) tracking, used asynchronously between visits by parents and providers of children with medical complexity. The primary outcome was quality of goal-setting assessed by the Patient Assessment of Care for Chronic Illness Care goal-setting domain at baseline (t1) and 1 month (t2). We conducted a repeated-measures mixed-effects ANOVA to evaluate between- and within-group differences over time for fixed effects (timing of intervention, intervention×time) and random effect (provider cluster).

We enrolled 67 parent-child dyads (control: n=32 control; intervention: n=35). Parents had a mean age of 37.4 (SD 8.2) years, children with medical complexity with mean age 5.6 (SD 0.5) years, and 29 (44%) parents identified as Hispanic. Of the 35 intervention parents, 34 successfully used GoalKeeper during the clinical encounter with their provider. During the follow-up period, quality of goal-setting was sustained at t2 for the intervention group but declined for the control group (δ=0.03 vs -0.43; F49=3.52, P=.06). Similar patterns were observed for care quality (δ=0.01 vs -0.48; F49=4.28, P=.04).

Our study demonstrates that family-centered goal-setting may help combat the gradual decline in care quality otherwise experienced by children with medical complexity in between clinic visits. Successful use of the tool with providers in clinic suggests that digital tools are feasible interventions to change family-provider communication around family goals.