Assistant Professor University of Utah University of Utah Salt Lake City, Utah, United States
Background: Parent-provider goal setting has been proposed as an essential component of model care plans for children with medical complexity (CMC). Family-centered technology to support goal setting may offer a scalable solution but has not been rigorously evaluated.
Objective: To evaluate the efficacy of GoalKeeper (GK), an Internet-based goal-centered care plan, on the quality of goal-setting in ambulatory care of CMC.
Design/Methods: We conducted a randomized controlled trial of GK using a stepped wedge design at complex care and neurology clinics at a children’s hospital (Clinical Trials #NCT03620071). We recruited providers (MD, DO, NP) from participating clinics and parents ≥18 years, English-speaking, with home Internet access, and a CMC < age 12 seen by an enrolled provider. Parents received usual care or GK based on their provider’s current assignment as control or intervention. GK has two components: 1) facilitated goal elicitation between parents and providers in the clinic visit and 2) longitudinal, personalized goal tracker. Parents completed serial surveys right after the visit, 1-month and 3-months post-visit. Providers completed surveys right after the visit and at end of study. The GK group and all providers underwent semi-structured exit interviews about the intervention. Our primary outcome was quality of goal-setting (scale 0-4) based on the goal-setting domain of the Patient Assessment of Care for Chronic Illness Care (PACIC). We used repeated measures mixed-effects ANOVA to evaluate between- and within-group differences in outcome between baseline and 1-month adjusting for fixed effects: timing of intervention and intervention*time, and a random effect: provider cluster.
Results: Between 4/1/19-12/21/20, we enrolled 13 providers (7 female, 5 complex care, 9 MDs), 30 control group parents, and 26 GK group parents. Parents had a mean age of 37.3 years (SD 9.6), 73% female, 49% Caucasian and 39% Hispanic, 76% with at least some college education. Their children had a mean age of 5.6 (SD 0.5), 69% male, with similar race/ethnicity. Each subgroup had similar characteristics. At 1-month the control group had decreased goal-setting score of 2.14 (SD 1.23) versus stable score of 2.44 (SD 1.16) for the GK group. These differences have a p-value of 0.1. We saw similar effects in composite PACIC score. Conclusion(s): Parents who received GK reported higher quality goal setting than those in the control group that was small but statistically significant.
Figure 1. CONSORT diagram
Table 1. Parent characteristics
Table 2. Child characteristics
Table 3. Outcomes by subgroup
Authors/Institutions: Jody L. Lin, University of Utah Health, Salt Lake City, Utah, United States; Bernd Huber, Harvard University, Cambridge, Massachusetts, United States; Ofra Amir, Technion Israel Institute of Technology, Haifa, Haifa, Israel; Shiri Assis-Hassid, Harvard University, Cambridge, Massachusetts, United States; Sebastian Gehrmann, Harvard University, Cambridge, Massachusetts, United States; Krzysztof Gajos, Harvard University, Cambridge, Massachusetts, United States; Barbara Grosz, Harvard University, Cambridge, Massachusetts, United States; Lee M. Sanders, Stanford University, Stanford, California, United States
.jpg "Jody L. Lin, MD, MS photo")
