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Background: Shared care plans that address family-centered goals are an integral part of care coordination for children with medical complexity (CMC), but it is unknown how reliably the pediatric medical home develops care plans that target various goal types. Objective: To describe how often various types of patient and family-stated goals are addressed with an action plan. Design/Methods: Participants included 1498 children, aged 0-21 years, who were assigned a care manager at one of 4 primary care practices (3 general pediatric clinics, 1 complex care center) from 2014-2017 and had a documented patient/family-stated goal. Children eligible for care coordination services had medical and/or social complexity on a validated pediatric medical complexity algorithm and/or social work assessment, respectively. Our multidisciplinary team, consisting of 3 pediatricians, 2 parents of CMC, and one social worker, previously used an inductive qualitative approach to develop a categorization scheme with 3 major themes encompassing 15 goal categories. We randomly sampled 780 children and reviewed notes abstracted from the electronic medical record for analysis. We coded progress notes to determine whether the plan included an action/strategy that addressed the stated goal. We independently coded 20% of subjects twice for reliability with κ=0.66 indicating substantial agreement. Team members held meetings to review disagreements and reach consensus. Differences in primary care provider (PCP) and care manager (CM) plans were compared using Chi-square tests.Results: Our sample of CMC was 56% male, 54% black, 31% white, with a mean age of 7.9 years. Of the 3 overarching major themes, CM plans were significantly more likely than PCP plans to address goals within the Behavior & Development theme and Social theme, while CMs and PCPs similarly addressed goals within the Clinical theme. PCPs were most likely to develop a plan that addressed a Clinical goal (73.4%), with plans addressing Behavior & Development and Social goals, 61.6% and only 31.4% of the time, respectively. CM plans were significantly more likely to address goals of Family/Child Self-Management of Medical Problems, Access to Healthcare Services, School, Housing, Financial Support, and Home Life. Across all goal categories, presence of a goal-directed care plan from either the PCP or CM, representing care plan development by the care team, outperformed frequencies of receipt of a care plan from both the PCP individually and the CM individually.Conclusion: CMC and their families have diverse needs and priorities that are variably addressed in care plans. Our findings support that multidisciplinary teams in the pediatric medical home, especially when including a primary care provider and care manager, improve the likelihood that CMC and their families receive an action plan that is goal-directed. Additional research is needed to understand whether robust care plans impact child and family healthcare outcomes. |
