Fellow Boston Children's Hospital, Massachusetts, United States
Background: Children with medical complexity (CMC) are a growing population at high risk for having unmet needs. Various complex care (CC) clinical programs are emerging to optimize healthcare delivery for CMC, but there is little understanding of patient and family caregiver expectations when engaging a CC program. Understanding family goals and needs can help ensure alignment with services and resources in CC programs. Objective: To assess and categorize family caregiver-reported goals of utilizing a consultative CC clinical program. Design/Methods: A retrospective health record review of clinical documentation of initial patient encounters 1/1/23 to 8/31/23 at a CC outpatient clinic within a freestanding children’s hospital. The outcome of family/caregiver goals was defined as the described purpose of establishing care in a CC program or indication of clear priorities for meeting care needs. We plan to assess 1) if family goals were discussed at the first visit; and 2) what specific care needs were identified, comparing whether they were caregiver-initiated or provider-initiated. Descriptions of family goals and needs will be analyzed using qualitative content analysis, conducted by two clinicians independently with differences resolved by a third reviewer. Categorization will be updated during analysis with discussion between reviewers to gain meaningful insights from the data. Preliminary categorization of reported goals and needs includes 1) inter-department communication, 2) subspecialty referrals, 3) social work, 4) school advocacy, 5) medical equipment, 6) scheduling needs, 7) therapy, 8) coordinating hospital admission, 9) coordinating procedures, or 10) care for specific clinical issues. We will also collect demographic data on patient age, sex, primary diagnosis and diagnosis system. Data analysis will be complete by 12/31/23, and results will be displayed in percentages and tables. Our findings will inform a subsequent quality improvement initiative to optimize clinical processes to ensure that family goals are being systematically elicited and met.
