Medical advances have extended the lives of adults with CHD, but transitioning to adult healthcare remains challenging. Identifying factors related to lapses in care is crucial for adult females due to their unique healthcare needs.

We examined the relationships among length of lapses in primary care and cardiology services with quality of life and perceived health status for adult females with CHD.

A convergent mixed-methods design was used to examine thirty adult females with CHD, aged 21–30. Descriptive statistics and correlational analysis were used to examine perceived health status and quality of life based on lapse of care durations. Thematic analysis was used for qualitative data.

A 12-month or greater lapse in care occurred in 46.7% of participants for cardiology and 60% for primary care, and 30.0% lacked an established adult primary care provider. Participants cited healthcare system barriers, provider shortages, and difficult transitions from paediatric providers as contributing factors to lapses in care. Despite lapses, most participants reported similar or better physical health scores than the general population. However, those with either no or prolonged lapse in cardiology care had lower mental health scores. Participants with primary care lapses greater than 6 months reported better quality-of-life scores than those with uninterrupted care.

Significant gaps, which contribute to lapses of care, persist in transition care for females with CHD. Findings highlight the need for structured transition planning, improved primary care access, and an integrated primary-specialty care model to improve transition.

Amongst patients with CHD, the time of transition to adulthood is associated with lapses in care leading to significant morbidity. The purpose of this study was to identify differences in perceptions between parents and teens in regard to transition readiness.

Responses were collected from 175 teen–parent pairs via the validated CHD Transition Readiness survey and an information request checklist. The survey was distributed via an electronic tablet at a routine clinic visit.

Parents reported a perceived knowledge gap of 29.2% (the percentage of survey items in which a parent believes their teen does not know), compared to teens self-reporting an average of 25.9% of survey items in which they feel deficient (p = 0.01). Agreement was lowest for long-term medical needs, physical activities allowed, insurance, and education. In regard to self-management behaviours, agreement between parent and teen was slight to moderate (weighted κ statistic = 0.18 to 0.51). For self-efficacy, agreement ranged from slight to fair (weighted κ = 0.16 to 0.28). Teens were more likely to request information than their parents (79% versus 65% requesting at least one item) particularly in regard to pregnancy/contraception and insurance.

Parents and teens differ in several key perceptions regarding knowledge, behaviours, and feelings related to the management of heart disease. Specifically, parents perceive a higher knowledge deficit, teens perceive higher self-efficacy, and parents and teens agree that self-management is low.

A growing population of adults living with severe, chronic childhood-onset health conditions has created a need for specialized health care delivered by providers who have expertise both in adult medicine and in those conditions. Optimal care of these patients requires systematic approaches to healthcare transition (HCT). Guidelines for HCT exist, but gaps in care occur, and there are limited data on outcomes of HCT processes.

The Single Disease Workgroup of the Lifespan Domain Task Force of the National Center for Advancing Translational Sciences Clinical and Translational Science Award programs convened a group to review the current state of HCT and to identify gaps in research and practice. Using cystic fibrosis and sickle cell disease as models, key themes were developed. A literature search identified general and disease-specific articles. We summarized key findings.

We identified literature characterizing patient, parent and healthcare provider perspectives, recommendations for transition care, and barriers to effective transition.

With increased survival of patients with severe childhood onset diseases, ongoing study of effective transition practices is essential as survival increases for severe childhood onset diseases. We propose pragmatic methods to enhance transition research to improve health and key outcomes.