Long-term outcomes for pediatric heart transplant recipients transitioning to adult care teams.

BACKGROUND: There are limited data evaluating the success of a structured transition plan specifically for pediatric heart transplant (HT) recipients following their transfer of care to an adult specialist. We sought to identify risk factors for poor adherence, graft failure, and mortality following the transfer of care to adult HT care teams. METHODS: We retrospectively reviewed all patients who underwent transition from the pediatric to adult HT program at our center between January 2011 and June 2021. Demographic characteristics, comorbid conditions, and psychosocial history were collected at the time of HT, the time of transition, and the most recent follow-up. Adverse events including mortality, graft rejection, infection, and renal function were also captured before and after the transition. RESULTS: Seventy-two patients were identified (54.1% male, 54.2% Caucasian). Mean age at the time of transition was 23 years after a median of 11.6 years in the pediatric program. The use of calcineurin inhibitors was associated with reduced mortality (HR .04, 95% CI .0-.6, p = .015), while prior psychiatric hospitalization (HR 45.3, 95% CI, 6.144-333.9, p = .0001) was associated with increased mortality following transition. Medication nonadherence and young age at the time of transition were markers for high-risk individuals prior to the transition of care. CONCLUSIONS: Transition of HT recipients from a pediatric program to an adult program occurs during a vulnerable time of emerging adulthood, and we have identified risk factors for mortality following transition. Development of a formalized transition plan with a large multidisciplinary team with focused attention on high-risk patients, including those with psychiatric comorbidities, may favorably influence outcomes.

"An urgent need for transition of care programs for adolescents and young adults with neurogastroenterology and motility disorders".

Transition of Care for Adolescents and Young Adults (AYA) with Neurogastroenterology & Motility (NGM) Disorders.

The Crucial Role of Empowerment in Engaging Adolescents and Young Adults for Independence: Essential Strategies and Skills for a Successful Transition.

BACKGROUND: An increasing number of pediatric solid organ transplant (SOT) recipients are surviving into adolescence and young adulthood. The transition from pediatric to adult-oriented care occurs during a unique and vulnerable period. METHODS: Presented here is a structured approach to healthcare transition (HCT) for adolescent and young adult SOT recipients aimed at optimizing independence in order to assist young patients with adherence, self-management, and improved quality of life. RESULTS: Close attention must be paid to neurocognitive development, mental well-being, and social determinants of health. CONCLUSIONS: These efforts require a multidisciplinary team approach as well as collaboration between pediatric and adult providers in order to achieve these goals and patient longevity.

Exploring the effects of acceptable palliative care models on survival time and healthcare expenditure among patients with cancer: a national longitudinal population-based study.

OBJECTIVE: Hospice care ensures better end-of-life quality by relieving terminal symptoms. Prior research has indicated that hospice care could prolong survival and reduce end-of-life medical expenditures among patients with cancer. However, the dearth of studies on the effects of hospice care type and use sequence on survival time and end-of-life medical expenditures substantiates the need for investigation. DATA SOURCES AND STUDY SETTING: Two million random records were obtained from the National Health Insurance Research Database. STUDY DESIGN: We estimated the effects of the type and sequence of hospice care use on survival time and medical expenditures among advanced cancer patients. This was a cross-sectional study. DATA COLLECTION/EXTRACTION METHODS: Patient data were collected from 2 million random records provided by the National Health Insurance Research Database of Taiwan. We included people with cancer and excluded patients under 20 years of age; 2860 patients remained after matching. PRINCIPAL FINDINGS: The results indicated that the average survival time of patients who received inpatient palliative care (1022 days) was significantly shorter than that of patients who did not receive palliative care (P < 0.001), but the health care expenditure during the entire course of cancer therapy was not the lowest. Interestingly, patients who received inpatient palliative care had the lowest health care expenditure at 1 year or month before the end of life (P < 0.001). CONCLUSION: The type and sequence of palliative care affected the survival time and health care expenditures of cancer patients. Receiving palliative care did not prolong survival but rather reduced health care expenditures. The sequence of receiving palliative care significantly affected health care expenditures.

Family based behavioral treatment in adolescents suffering from obesity: evolution through adulthood.

BACKGROUND: Family Based Behavioral Treatments (FBBT) are reported to have a favorable impact on the short and mid-term evolution on the body mass index (BMI) of adolescents suffering from obesity. This study investigated the long-term BMI z-score evolution, as well as variables associated with favorable or unfavorable evolution in adolescents who beneficiated from FBBT group therapy treatment for obesity. METHODS: This was a prospective study including adolescents who participated in FBBT group therapy for obesity sessions (n = 131). All adolescents were invited for a study's clinical interview 4 years after the therapy, during which their weight and height were measured, and they answered a questionnaire on some life habits. Anthropometric measurements at the time of therapy as well as socio-demographic data were retrospectively extracted from the electronic medical record. RESULTS: Seventy-six subjects (57% of the sample) accepted to participate in the study. At the study's clinical interview (mean 5.5 years after FBBT), 52.6% of the adolescents showed a favorable evolution of their weight status defined as a decrease (>-0.2) or stabilization (between - 0.2 and + 0.2) of their BMI z-score. 32% were engaged in a daily physical activity and 40.6% monitored their weight at least once a week or more. Only these 2 variables were associated with a favorable evolution (p = 0.009 and p = 0.001, respectively). Less than half of the sample (45.9%) have maintained a medical weight-management follow up, of which 67% had a BMI equal or more than 30. CONCLUSIONS: Long-term evolution of the BMI z-score was favorable for most of the adolescents, emphasizing the potential benefits of FBBT treatment on the long term for adolescents suffering from obesity. This study highlighted the difficulty for long-term weight management follow up in this population at risk of numerous medical comorbidities, confirming the need to improve adherence to weight management treatment at this age of transition of care. Prospective observational study registered.

Pharmacist-led medication reconciliation service for patients after discharge from tertiary hospitals to primary care in Singapore: a qualitative study.

BACKGROUND: Medication discrepancies commonly occur when patients are transferred between care settings. Despite the presence of medication reconciliation services (MRS), medication discrepancies are still prevalent, which has clinical costs and implications. This study aimed to explore the perspectives of various stakeholders on how the MRS can be optimized in Singapore. METHODS: This is a descriptive qualitative study. Semi-structured interviews with 30 participants from the National Healthcare Group, including family physicians (N = 10), pharmacists (N = 10), patients recently discharged from restructured hospitals (N = 7) and their caregivers (N = 3) were conducted. All transcribed interviews were coded independently by three coders and inductive thematic analysis approach was used. RESULTS: Five core themes were identified. (1) The MRS enhanced healthcare services in various aspects including efficiency and health literacy; (2) There were several challenges in delivering the MRS covering processes, technology and training; (3) Issues with suitable patient selection and follow-up; (4) Barriers to scaling up of MRS that involve various stakeholders, cross-sector integration and environmental restrictions; and finally (5) Role definition of the pharmacist to all the stakeholders. CONCLUSION: This study identified the role of MRS in enhancing healthcare services and explored the challenges encountered in the provision of MRS from family physicians, pharmacists, patients and their caregivers. These findings supported the need for a shift of MRS towards a more comprehensive medication review model. Future improvement work to the MRS can be conducted based on the findings.

Patient medication management, understanding and adherence during the transition from hospital to outpatient care - a qualitative longitudinal study in polymorbid patients with type 2 diabetes.

BACKGROUND: Continuity of care is under great pressure during the transition from hospital to outpatient care. Medication changes during hospitalization may be poorly communicated and understood, compromising patient safety during the transition from hospital to home. The main aims of this study were to investigate the perspectives of patients with type 2 diabetes and multimorbidities on their medications from hospital discharge to outpatient care, and their healthcare journey through the outpatient healthcare system. In this article, we present the results focusing on patients' perspectives of their medications from hospital to two months after discharge. METHODS: Patients with type 2 diabetes, with at least two comorbidities and who returned home after discharge, were recruited during their hospitalization. A descriptive qualitative longitudinal research approach was adopted, with four in-depth semi-structured interviews per participant over a period of two months after discharge. Interviews were based on semi-structured guides, transcribed verbatim, and a thematic analysis was conducted. RESULTS: Twenty-one participants were included from October 2020 to July 2021. Seventy-five interviews were conducted. Three main themes were identified: (A) Medication management, (B) Medication understanding, and (C) Medication adherence, during three periods: (1) Hospitalization, (2) Care transition, and (3) Outpatient care. Participants had varying levels of need for medication information and involvement in medication management during hospitalization and in outpatient care. The transition from hospital to autonomous medication management was difficult for most participants, who quickly returned to their routines with some participants experiencing difficulties in medication adherence. CONCLUSIONS: The transition from hospital to outpatient care is a challenging process during which discharged patients are vulnerable and are willing to take steps to better manage, understand, and adhere to their medications. The resulting tension between patients' difficulties with their medications and lack of standardized healthcare support calls for interprofessional guidelines to better address patients' needs, increase their safety, and standardize physicians', pharmacists', and nurses' roles and responsibilities.

Transition of care in adolescents with epidermolysis bullosa: The provider perspective.

The characteristics of epidermolysis bullosa (EB) demand higher than average provider support for transition from pediatric to adult care. We administered an online Qualtrics survey to members of the Epidermolysis Bullosa Clinical Research Consortium (EBCRC), a group of providers who care for patients with EB, in order to examine their practices and perspectives on transition of care (TOC) and identify barriers to successful implementation. Sixteen of eighteen medical centers completed the survey. Eighty-eight percent of center representatives expressed concerns about their patients transitioning/transferring from the pediatric to adult-centered care. Thirty-eight percent of providers reported having a formal TOC program in place. Our findings support the desire for formal TOC programs, the need for a team-based approach and, in particular, identification of adult providers to participate in the transition to improve this often challenging time.

Transition of care in CHD: a single-centre experience: an enigma remains.

Transition of care refers to the continuity of health care during the movement from one healthcare setting to another as care needs change during a chronic illness. We sought to describe social, demographic, and clinical factors related to successful transition in a tertiary urban care facility in patients with CHD. Patients were identified utilising the electronic medical record. Inclusion criteria were patients with CHDs aged ≥15 years seen in the paediatric cardiology clinic between 2013 and 2014. Deceased patients were excluded. Clinical and demographic variables were collected. Patient charts were reviewed in 2015-2021 to determine if included patients were a) still in paediatric cardiology care, b) transitioned to adult cardiology/adult CHD, or were c) lost to follow-up. A total of 322 patients, 53% male (N:172), 46% female (N:149) were included. Majority had moderately complex lesions (N:132, 41%). Most patients had public insurance (N:172, 53%), followed by private insurance (N:67, 21%), while 15% of patients (N:47) were uninsured. Only 49% (N = 159) had successful transition, while 22% (N = 70) continued in care with paediatric cardiology, and 29% (N = 93) were lost to follow-up. Severity of CHD (p = 0.0002), having healthcare insurance (p < .0001), presence of a defibrillator (p = 0.0028), and frequency of paediatric cardiology visits (p = 0.0005) were significantly associated with successful transition. Most patients lost to follow-up (N:42,62%) were either uninsured or had public insurance. Lack of successful transition is multifactorial, and further efforts are needed to improve the process in patients with CHD.

Optimising Transitional Care Following a Heart Failure Hospitalisation in Australia.

Hospitalisations for heart failure (HF) are associated with high rates of readmission and death, the most vulnerable period being within the first few weeks post-hospital discharge. Effective transition of care from hospital to community settings for patients with HF can help reduce readmission and mortality over the vulnerable period, and improve long-term outcomes for patients, their family or carers, and the healthcare system. Planning and communication underpin a seamless transition of care, by ensuring that the changes to patients' management initiated in hospital continue to be implemented following discharge and in the long term. This evidence-based guide, developed by a multidisciplinary group of Australian experts in HF, discusses best practice for achieving appropriate and effective transition of patients hospitalised with HF to community care in the Australian setting. It provides guidance on key factors to address before and after hospital discharge, as well as practical tools that can be used to facilitate a smooth transition of care.

"It's On Your Shoulders Now" Transitioning from Child-to-Adult UK Cleft Lip/Palate Services: An Exploration of Young Adults' Narratives.

OBJECTIVES: Treatment for cleft lip and/or palate (CL/P) in the United Kingdom is administered on a standardised pathway from diagnosis to early adulthood, with options to be re-referred in later life. At age 16, patients become responsible for their treatment decisions. Evidence from the wider health literature indicates this transition can be challenging and that this population may require additional support. The present study explored young people's experiences of transition to adult care in the context of CL/P services, with the aim of identifying support needs and informing future service delivery. DESIGN: Individual semi-structured interviews were conducted with 15 individuals with CL/P (aged 17-25 years) to explore transition experiences. Interviews lasted an average of 69 min and data were analysed using reflexive thematic analysis. RESULTS: Four themes, with subthemes, were identified: 1) Readiness for Transition covered feelings of preparedness and how health professionals approached transition; 2) Making Decisions as an Adult described concerns and considerations when making treatment decisions; 3) Finding and Using Support, reflected the roles of caregivers and peers in developing self-advocacy; and 4) Reflections on Transition Care offered insight into how care could be improved. CONCLUSION: Individuals born with CL/P may experience challenges in becoming responsible for their own care and treatment decisions. The findings of this study indicate that a dedicated transition protocol may be beneficial, such that adolescents are prepared to confidently access and manage their care into adulthood. Opportunities for improvements in transition planning and provision are discussed.

The Health Care Transition Needs of Adolescents and Emerging Adults with Chronic Pain: A Narrative Review.

The aim of this narrative review was to provide an overview of what is known about the health care transition process in pediatric chronic pain, barriers to successful transition of care, and the roles that pediatric psychologists and other health care providers can play in the transition process. Searches were run in in Ovid, PsycINFO, Academic Search Complete, and PubMed. Eight relevant articles were identified. There are no published protocols, guidelines, or assessment measures specific to the health care transition in pediatric chronic pain. Patients report many barriers to the transition process, including difficulty attaining reliable medical information, establishing care with new providers, financial concerns, and adapting to the increased personal responsibility for their medical care. Additional research is needed to develop and test protocols to facilitate transition of care. Protocols should emphasize structured, face-to-face interactions and include high levels of coordination between pediatric and adult care teams.

Subcutaneous administration of drugs and hydration in acute palliative care units: Physician attitudes and beliefs in the United States and Canada.

OBJECTIVES: The objective of this study was to compare the attitudes and beliefs of PCU physicians leaders in the United States versus Canada regarding the subcutaneous method in the administration of medications and hydration in order to gain a better understanding as to why variations in practice exist. METHODS: This survey trial took place from November 2022 to May 2023. The MD Anderson Cancer Center institutional review board in Houston, Texas, approved this study. The participants were the physician leaders of the acute palliative care units (PCUs) in the United States and Canada. The survey comprised questions formulated by the study investigators regarding the perceived comfort, efficiency, and preference of using the subcutaneous versus the intravenous method. The consent form and survey links were emailed to the participants. RESULTS: Sixteen PCUs were identified in the United States and 15 PCUs in Canada. Nine US and 8 Canadian physicians completed the survey. Physicians in Canada were more likely to use the subcutaneous route for administering opioids, antiemetics, neuroleptics, and hydration. They preferred subcutaneous over intravenous or intramuscular routes (p = 0.017). Canadian physicians felt their nursing staff was more comfortable with subcutaneous administration (p = 0.022) and that it was easier to administer (p = 0.02). US physicians felt the intravenous route was more efficient (p = 0.013). SIGNIFICANCE OF RESULTS: The study results suggest that exposure to the subcutaneous route influences a physician's perception. Further research is needed to explore ways to incorporate its use to a greater degree in the US healthcare system.

Knowledge, Attitudes, and Practices of Allergists/Immunologists Regarding Transition of Care for Primary Immunodeficiency Patients.

PURPOSE: Only some allergists/immunologists provide care throughout the lifespan despite their training. Although transition of care (TOC) guidelines exist, research on provider perspectives on TOC for pediatric primary immunodeficiency (PID) patients is lacking. We aimed to characterize knowledge, attitudes, and practices and establish clinician needs using a needs assessment survey. METHODS: The 15-min online survey was adapted from an existing rheumatology TOC survey and was emailed to the American Academy of Allergy Asthma and Immunology (AAAAI) and Clinical Immunology Society (CIS) members. Our primary hypothesis was that both AAAAI and CIS providers report being underprepared for TOC and would express interest in TOC resources and consensus. RESULTS: Forty-nine of 1250 eligible AAAAI and 67 of 698 eligible CIS participants completed the survey (4.8% vs 11.3% participation rate). Many (53.1% vs 59.7%) respondents transition their own patients but also retain adult patients (59.2% vs 52.2%). Many accepted transition patients (85.7% vs 92.5%). In total, 24.1% of respondents did not have a TOC policy while 18.9% have an informal policy. Only 25.0% were satisfied with their current practices while 43.9% agreed that a consensus statement would be useful. CONCLUSION: Despite a small sample size and high rate of unanswered questions, our findings show that TOC remains overlooked in our specialty and that providers want and need additional training and resources. There is a clear need to develop and evaluate the effectiveness of evidence-based TOC guidelines, resources, and best practices for PID patients.

The Perspectives of General Nephrologists Toward Transitions of Care and Management of Failing Kidney Transplants.

The management of failing kidney allograft and transition of care to general nephrologists (GN) remain a complex process. The Kidney Pancreas Community of Practice (KPCOP) Failing Allograft Workgroup designed and distributed a survey to GN between May and September 2021. Participants were invited via mail and email invitations. There were 103 respondents with primarily adult nephrology practices, of whom 41% had an academic affiliation. More than 60% reported listing for a second kidney as the most important concern in caring for patients with a failing allograft, followed by immunosuppression management (46%) and risk of mortality (38%), while resistant anemia was considered less of a concern. For the initial approach to immunosuppression reduction, 60% stop antimetabolites first, and 26% defer to the transplant nephrologist. Communicating with transplant centers about immunosuppression cessation was reported to occur always by 60%, and sometimes by 29%, while 12% reported making the decision independently. Nephrologists with academic appointments communicate with transplant providers more than private nephrologists (74% vs. 49%, p = 0.015). There are heterogeneous approaches to the care of patients with a failing allograft. Efforts to strengthen transitions of care and to develop practical practice guidelines are needed to improve the outcomes of this vulnerable population.

Evaluating adult care in Dravet syndrome upon transferring from pediatrics in the U.S.: A caregiver-based survey study.

Patients with Dravet syndrome (DS) and their caregivers must navigate a complex process upon transitioning from pediatric to adult healthcare settings. Our study examines the state of care transfer of patients with DS in the U.S. A 34-question e-survey evaluating patient demographics, clinical features, and details of the transfer process was sent to caregivers of adults with DS (≥18 years old) residing in the U.S. through the Dravet Syndrome Foundation. Forty-six responses were included in the analysis. Twenty-nine patients (n = 29/46) did not undergo transfer of care - mostly because they were still followed by pediatric neurologists/epileptologists (71%), whereas 17 (n = 17/46) underwent transfer of care. Adult neurology/epilepsy teams providing care never/rarely included a multidisciplinary team (71%), addressed patients' self-advocacy capabilities (53%), or legal guardianship/end-of-life decision-making (59%). Adult neurology/epilepsy teams were considered very much attentive/available (63%), attentive and accommodating to patients with behavioral/cognitive issues (50%), and knowledgeable about caring for patients with intellectual disability/behavioral issues (63%), collaborating with caregivers (75%), and DS - especially in adults (50%). Most caregivers (62.5%) rated the transfer process as good, very good, or excellent. Patients with DS and their caregivers would benefit from more accessible transition programs, which would be ideally equipped to deliver care tailored to these patients' needs.

Targeted care coordination towards patients with a history of multiple readmissions effectively reduces readmissions.

BACKGROUND: To decrease hospital readmission rates, clinical practices create a transition of care (TOC) process to assess patients and coordinate care postdischarge. As current evidence suggests lack of universal benefit, this study's objectives are to determine what patient and process factors associate with hospital readmissions, as well as construct a model to decrease 30-day readmissions. METHODS: Three months of retrospective discharged patient data (n = 123) were analysed for readmission influences including: patient-specific comorbidities, admission-specific diagnoses, and TOC components. A structured intervention of weekly contact, the Care Coordination Cocoon (CCC), was created for multiply readmitted patients (MRPs), defined as ≥2 readmissions. Three months of postintervention data (n = 141) were analysed. Overall readmission rates and patient- and process-specific characteristics were analysed for associations with hospital readmission. RESULTS: Standard TOC lacked significance. Patient-specific comorbidities of cancer (odds ratio [OR] 6.27; 95% confidence interval [CI] 1.73-22.75) and coronary artery disease (OR 6.71; 95% CI 1.84-24.46), and admission-specific diagnoses within pulmonary system admissions (OR 7.20; 95% CI 1.96-26.41) were associated with readmissions. Post-CCC data demonstrated a 48-h call (OR 0.21; 95% CI 0.09-0.50), answered calls (OR 0.16; CI 0.07-0.38), 14-day scheduled visit (OR 0.20; 95% CI 0.07-0.54), and visit arrival (OR 0.39; 95% CI 0.17-0.91) independently associated with decreased readmission rate. Patient-specific (hypertension-OR 3.65; CI 1.03-12.87) and admission-specific (nephrologic system-OR 3.22; CI 1.02-10.14) factors associated with readmissions which differed from the initial analysis. CONCLUSIONS: Targeting a practice's MRPs with CCC resources improves the association of TOC components with readmissions and rates decreased. This is a more efficient use of TOC resources.

Transition models of care for type 1 diabetes: a systematic review.

BACKGROUND: Managing the care regimen for Type 1 Diabetes is challenging for emerging adults, as they take on greater responsibility for self-management. A diverse range of models of care have been implemented to improve safety and quality of care during transition between paediatric and adult services. However, evidence about acceptability and effectiveness of these is limited. Our aim was to synthesise the evidence for transition models and their components, examine the health related and psychosocial outcomes, and to identify determinants associated with the implementation of person-centred models of transition care. METHOD: We searched Medline, CINAHL, EMBASE and Scopus. Peer reviewed empirical studies that focused on T1D models of care published from 2010 to 2021 in English, reporting experimental, qualitative, mixed methods, and observational studies were included. RESULTS: Fourteen studies reported on health and psychosocial outcomes, and engagement with healthcare. Three key models of care emerged: structured transition education programs (6 studies), multidisciplinary team transition support (5 studies) and telehealth/virtual care (3 studies). Compared with usual practice, three of the six structured transition education programs led to improvements in maintenance of glycaemic control, psychological well-being, and engagement with health services. Four MDT transition care models reported improved health outcomes, and improved engagement with health services, however, three studies reported no benefit. Reduced diabetes related stress and increased patient satisfaction were reported by two studies, but three reported no benefit. Telehealth and virtual group appointments improved adherence to self-management and reduced diabetes distress but did not change health outcomes. CONCLUSIONS: Although some health and psychosocial benefits are reported, the results were mixed. No studies reported on T1D transition model implementation outcomes such as acceptability, adoption, and appropriateness among clinicians or managers implementing these models. This gap needs to be addressed to support future adoption of successful models.

Transition of care in patients with epidermolysis bullosa: A survey study.

There are little published data on the transition of care in EB. We conducted a survey study recruiting EB patients from the Dystrophic EB Research Association (debra) website and centers caring for high numbers of EB patients in the United States and internationally from Sept 17, 2019 to Nov 3, 2021. The majority of participants had not discussed the transition of care with their healthcare providers, nor the healthcare needs to be required as an adult. Ongoing pediatric subspecialty care was reported by 12% of adults, most commonly in pediatric dermatology. Identified barriers to transition included the perceived lack of adult providers' knowledge about EB patient healthcare needs. The results suggest the need for transition guidelines, early discussions with families about transition, and practical information for the adult providers accepting care.

Patient factors and geographic barriers influencing excess time between paediatric and adult CHD care.

INTRODUCTION: Over 90% of children with CHD survive into adulthood and require lifelong cardiology care. Delays in care predispose patients to cardiac complications. We sought to determine the time interval to accessing adult CHD care beyond what was recommended by the referring paediatric cardiologist (excess time) and determine risk factors for prolonged excess time. MATERIALS AND METHODS: Retrospective cohort study including all patients in the province of Alberta, Canada, age 16-18 years at their last paediatric cardiology visit, with moderate or complex lesions. Excess time between paediatric and adult care was defined as the interval (months) between the final paediatric visit and the first adult visit, minus the recommended interval between these appointments. Patients whose first adult CHD appointment occurred earlier than the recommended interval were assigned an excess time of zero. RESULTS: We included 286 patients (66% male, mean age 17.6 years). Mean excess time was 7.9 ± 15.9 months. Twenty-nine (10%) had an excess time > 24 months. Not having a pacemaker (p = 0.03) and not needing cardiac medications at transfer (p = 0.02) were risk factors for excess time >3 months. Excess time was not influenced by CHD complexity. DISCUSSION: The mean delay to first adult CHD appointment was almost 8 months longer than recommended by referring paediatric cardiologists. Not having a pacemaker and not needing cardiac medication(s) were risk factors for excess time > 3 months. Greater outpatient resources are required to accommodate the growing number of adult CHD survivors.