Discussion

Preparing youth with CHD for the transition from paediatric models of cardiac care to adult-oriented care is a challenging and ongoing clinical care issue. Contrary to some common patient misconceptions, many CHD conditions are palliated rather than cured and have important long-term implications for lifestyle, career choices, insurance, family planning, psychosocial issues, and other health comorbidities in adulthood necessitating longitudinal subspecialised follow-up. Transition of care involves a planned and continuous shift from paediatric family-centred care to adult patient-centred care. To do so successfully, patients must acquire and cultivate skills in self-management and self-advocacy, develop openness to independence and medical responsibility, and understand their condition including potential comorbidities. Clearly, this is a multi-faceted process requiring investment of the patient, family, and primary cardiology team at a minimum. There are many models used in clinical practice to attempt to improve the transition process for youth with CHD, with many examining structured CHD educational interventions^{Reference Ladouceur, Calderon, Traore, Cheurfi, Pagnon, Khraiche, Bajolle and Bonnet15–Reference Goossens, Fieuws and Van Deyk17} and others assessing interventions geared towards general health-management skills.^{Reference Acuña Mora, Sparud-Lundin, Bratt and Moons18,Reference Huang, Terrones and Tompane19} Measuring the short- and long-term impact of a transition program is challenging, and various goals and definitions of success exist. Improvement in patient medical knowledge is a frequently studied and quantifiable outcome.

To our knowledge, this is the first study to describe the success of a focused, clinic-based transition intervention in improving cardiology follow-up rates when compared to usual care alone. There is a growing body of literature about factors which seem protective against or predictive for lapses in care, though none have examined the impact of clinical interventions at improving overall cardiac care retention at this vulnerable broad age range (be this paediatric or adult CHD care). One similar intervention recently published by Mackie et al described the successful impact of a nurse-led educational intervention on timely transfer to adult CHD care.^{Reference Mackie, Rempel and Kovacs20} Mackie’s study differs from this described CHD Transition Clinic in the team’s assessment of a more narrow cohort (16- to 17-year olds with moderate or complex CHD) and in their more specific outcome of prompt transfer completion to adult CHD care. However, many paediatric cardiology clinics do not yet have a standardised approach in patient transfer to an adult team; additionally, evidence shows prevalent lapses in cardiac care for patients with mild forms of CHD and for younger age groups.^{Reference Mackie, Ionescu-Ittu and Therrien3,Reference Gurvitz, Valente and Broberg5,Reference Goossens, Stephani and Hilderson21,Reference Fernandes, Khairy and Fishman22} Therefore, our intervention broadened the outcome to examine overall maintenance of cardiac care in a wider patient cohort.

We theorise three primary contributors to the success of this transition intervention. One is the premise that the clinic’s focused education on CHD implications and health-management skills translates into better continuity of cardiac care. Many other groups are actively strategising and examining this focus on education with a similar assumption.^{Reference Sable, Foster and Uzark9,Reference Uzark, Jones, Burwinkle and Varni14–Reference Valente, Landzberg and Gianola16} The second potential contributor to care retention is the CHD Transition Clinic electronic registry database, which is specifically utilised by clinic team members to track and monitor participants’ recommended cardiology follow-up appointments as well as progression of self-reported transition readiness scores. This enables identification of a potential lapse in care continuity with a consequent reminder to the patient and/or family. This strategy can identify individual patient barriers to care maintenance at this vulnerable age period, such as financial difficulties, insurance changes or problems, transportation issues, or relocation. Lastly, we believe that the face-to-face introduction of a member of the Adult CHD care team emphasises the necessity and importance of lifelong care into adulthood and offers a personalised approach in preparation to transition to an adult model or transfer to adult team.

Participants’ baseline visit Transition Readiness Assessment Questionnaire scores suggest that our patient group would benefit most from strategies to improve skills needed for “Appointment-Keeping” (a self-management skill including scheduling appointments, following up on referrals for tests or labs, and managing health insurance coverage and finances) and “Tracking Health Issues” (a self-advocacy skill encompassing the ability to complete one’s medical history form, recall appointments and health questions, and obtain financial help with school or work). The finding that none of the transition readiness follow-up scores significantly changed on participants’ subsequent visits to CHD Transition Clinic highlights the probable need for improvement in implementing skills-based interventions. The low ratings in areas of cognitive problems and treatment anxiety by patients and parents on the Pediatric Quality of Life Cardiac Module support existing evidence regarding risks of neurocognitive deficits and psychosocial challenges that patients with CHD face. These concerns persist throughout adulthood and often affect overall quality of life and social roles.^{Reference Marino, Lipkin and Newburger23–Reference Karsenty, Maury and Blot-Souletie28} Impaired executive function and mental health issues can hinder self-management and advocacy skills necessary to independently navigate one’s health care needs, potentially impairing successful transition and maintenance of cardiac care. Early identification of such issues via transition clinic assessments can facilitate resource provision to improve care outcomes.

While physical transfer of patient care to Adult CHD subspecialist care was not the primary goal of this CHD Transition Clinic intervention in its initial stage, we identified interesting trends in referral and transfer to adult care. Although the majority of adult participants were offered transfer to adult CHD care, barely half (55%) of those offered pursued a transfer of care. One reason frequently described was a strong patient or family desire to remain with their paediatric cardiologist, which is a common theme among other studies and is related to patients’ attachment to the provider who has often known and managed the patient since infancy.^{Reference Lee, Bailey and Cullen-Dean29–Reference Gurvitz and Saidi31} We believe that incorporation of an Adult CHD team member early into transitional care planning may ameliorate this concern by bridging an introduction to a new care team and offering the opportunity to form a relationship prior to actual care transfer. Another frequently cited reason our adult patients forego transfer of care was a desire to complete an ongoing milestone such as post-secondary education or a potential relocation. This information may guide transition policies on timing for care transfer, such as upon the conclusion of schooling or by around age 22 years as suggested in other guidelines about adolescent health care transition policies.^{Reference Health10}

Our study and results have several limitations. Its generalisability has inherent limits given the study design, including small sample size from a single centre. Subject information such as socioeconomic status and race was not recorded, so it is unknown if some populations were underrepresented in our cohort. The intervention cohort was predisposed to selection bias, as patients were enrolled solely by referral from their paediatric cardiologist who may possess reasons for referring or not referring patients of variable functioning levels. As the CHD Transition Clinic was developed as a quality improvement project, there was not a predefined prospective control cohort. Identification of a retrospective control cohort for this study with identical inclusion and exclusion criteria approximates similarity in the two groups and their characteristics, although there were significant differences in baseline characteristics (Table 1) which may introduce bias to our primary endpoint results. Additionally, identifying the primary outcome of “lost-to-follow-up” status by chart review may not reliably account for transfers of care to other centres if documentation does not occur, which would certainly impact results but is difficult to circumvent. Our centre does have the ability to view encounters for all paediatric or adult congenital cardiologists within a 2-hour radius of our centre, which helps capture many follow-up encounters. There are limitations of the interpretation of surrogate outcomes (questionnaires) rather than objective behaviours as outcomes. There was some variability in participants’ intervention “protocol” as the Transition Clinic team would also address issues typically discussed within a routine cardiology visit, which may at times identify more pressing disease-related concerns. It is not possible to discern the impact of the actual visit procedure on the primary outcome from the impact of the intentional contact attempt made to patients identified by registry as due for follow-up; we suspect both contribute to the unique success of this intervention compared to control group treatment. The available follow-up duration of transition intervention progress was limited to just over 2 years in order to assess preliminary pilot intervention progress and to describe results, and this relatively short timeframe limited total sample size. Lastly, while a transition intervention database registry holds powerful potential to impact care continuation and track patient outcomes, its upkeep and continuous management may be challenging with larger, and growing, participant cohorts.

In summary, this is the first study to our knowledge to demonstrate that an integrative clinic-based transition intervention can result in lower lost to follow-up rates among adolescents and young adults with CHD. The intervention protocol could be easily replicated by other programmes without requiring extensive resources. The self-report questionnaires to assess transition readiness and areas of cardiac health-related quality of life have good usability to track participant progress and to tailor interventions and resource provision. Utilisation of a database registry to identify lapses in care before they occur and offer patient assistance has tremendous potential to serve as a care tool. Future studies may investigate additional motivations and barriers for patient care continuation, development of an “app” to improve transition and communication between adolescents and the cardiac care team, and prospective assessments of additional clinic interventions to promote specific transition readiness skills or resource provision (such as mental health referrals or education-system collaboration). We would also be interested in testing the success of transition clinic policies influenced by these findings and to further evaluate the feasibility of maintaining an extensive patient database registry during this vulnerable time period where patients with CHD are at risk of significant interruptions of care.