Clinical outcomes after gaps-in-care for patients with moderate to severe congenital heart disease
Embargo Date
2027-09-22
OA Version
Citation
Abstract
BACKGROUND: Patients with congenital heart disease (CHD) frequently face challenges in maintaining consistent cardiac care, often resulting in gaps in care (GIC). Understanding the factors, including social determinants, contributing to these gaps and their implications for clinical outcomes is paramount for enhancing patient management strategies.
OBJECTIVE: The study aims to explore the reasons behind GIC, delineate factors prompting reestablishment of care, and evaluate the clinical care needs arising post-GIC, in patients with moderate to severe CHD. Demographics profiles and cardiac diagnoses between the initial cohort of patients lost to care and those who reestablished care were compared.
METHODS: Patients with moderate to severe CHD, followed in Cardiology Clinic at Boston Children’s Hospital between January 2013 and December 2015, and who subsequently had a GIC (defined as >3.25 years since their last clinic visit) were identified. Reestablished (RE) patients returned for at least 1 clinic visit since their GIC, whereas lost to care (LTC) patients have not returned. Patient data, including demographics and clinical characteristics, were collected from electronic medical records. A retrospective chart review was conducted for RE patients to confirm GIC, validate cardiac diagnosis, and investigate clinical outcomes.
RESULTS: Out of 654 patients with moderate to severe CHD with a GIC, only 18.5% (n=121) have reestablished care, with an average GIC of 5.3 years. Both RE and LTC patients were predominantly male, white non-Hispanics, English speakers, residents of Massachusetts, and privately insured. However, compared to the LTC group, RE patients were lost to care at a younger age (p<0.001), had more patient caregivers listed (p=0.002), and were more likely to reside in high/very high childhood opportunity index (COI) areas (p = 0.010). The primary reason cited for GIC was patients’ perception of good health during the interim period. Notably, patients from very low/low COI neighborhoods were more inclined to seek to emergency room care before reestablishing clinical care than those from high/very high COI areas. The duration of GIC did not exhibit significant associations with any examined variables, including symptoms, procedure rates, and COI. RE patients experienced clinical deterioration, particularly prominent in those with severe CHD, who showed a greater likelihood of worsening in NYHA/Ross functional class (p=0.019), increased procedure rates (p<0.001), and a higher requirement for urgent procedure, compared to moderate CHD patients. Additionally, associations were observed between very low/low COI and higher procedure rates (p=0.038), symptoms upon re-establishment (p=0.013), and an increased likelihood of urgent procedures.
CONCLUSIONS: GIC significantly impact patients with moderate to severe CHD, posing risks for disease progression, particularly associated with COI and number of patient caregivers. Efforts to reestablish care for those who are lost are vital to prevent unnecessary morbidity. The study underscores the need for targeted interventions to improve patient education, enhance caregiver engagement, and streamline healthcare delivery to optimize clinical outcomes and reduce GIC among this vulnerable populations.
Description
2024