Adult Congenital Heart Disease Clinic Research Articles

Experiences and Attitudes Toward Telemedicine in an Adult Congenital Heart Disease Clinic: Lessons Learned from the COVID-19 Pandemic.

The coronavirus disease 2019 (COVID-19) pandemic has driven a broader adoption of telemedicine (TM). We aim to describe adult congenital heart disease (ACHD) patient experiences with TM and explore factors associated with positive attitude toward future TM visits. This is a cross-sectional, single-center study in an outpatient ACHD clinic from February to June, 2022. Between-group comparisons were made using Wilcoxon-Rank Sum, Chi-Square, or Fisher-Exact tests. Univariate logistic regression was performed for variables that could correlate with a "positive" attitude toward future TM visits. Significance was determined using an alpha level of 0.05. Of 262 patients (median age 33years, 55% female, 81% White), 115 (44%) had a prior TM visit and 110 (96%) reported a positive experience. There were 64 (24%) with a positive attitude toward future TM visits. Concerns include lack of cardiac testing and limited quality of visit. Patients with visits every 3-6months (Odds Ratio [OR] 2.44; p < 0.01) and prior TM visit (OR 1.89; p = 0.03) had higher odds of a positive attitude toward future TM, whereas males had lower odds (OR 0.53; p = 0.04). Age, annual income, disease complexity, distance from clinic, and employment status were not associated. There is high rate of satisfaction with TM among ACHD patients but only one-quarter indicated interest in using TM in the future. Factors associated with interest in TM visits are identified, and together with patient feedback, can be used to understand potential role of TM for the ACHD population in the post-pandemic era.

Abstract 12143: Hearing is Believing: A Case of a Ruptured Sinus of Valsalva Aneurysm

A 36-year-old previously active and healthy male was referred to our Adult Congenital Heart Disease clinic with worsening exertional dyspnea and intermittent palpitations over the past 6 months. He had recently been diagnosed with a membranous ventricular septal defect (VSD) and membranous septal aneurysm at another hospital, although images were not available for review.On physical exam, a continuous cardiac murmur was noted which prompted reconsideration of the diagnosis, with highest suspicion of ruptured sinus of Valsalva aneurysm (SVA). An urgent cardiac CT was obtained, which showed a large, mobile right SVA protruding into and partially obstructing the right ventricular outflow tract (RVOT), with pulmonic regurgitation and dynamic closure of a supracristal VSD (Figure 1A). A margin of the SVA was ill-defined and suspicious for rupture, although no definite communication was seen. An expedited TTE showed findings consistent with SVA rupture (Figure 1B), and he was admitted for surgery soon thereafter. Intra-operatively (Figure 1C), SVA rupture into the RVOT was confirmed by direct inspection; the SVA tissue was resected, the defect closed with a fresh autologous pericardial patch, and the VSD was closed with pledgeted sutures. Post-operatively, there was no leakage around the patch margin and only trace aortic regurgitation.A ruptured SVA causes continuous shunting from the aorta into an adjacent cardiac chamber and if left unrecognized, can lead to right heart failure, arrhythmia, and potentially sudden death, emphasizing the need for early identification. Echocardiography may show an aneurysmal sinus of Valsalva with a continuous (with accentuation in diastole) high-velocity, turbulent flow-jet into an adjacent cardiac chamber, and holodiastolic aortic flow reversal; a VSD is often present. Cross-sectional imaging is also important for diagnosis and surgical planning. A comprehensive physical exam is crucial to mitigate the risk of misdiagnosis.

Adult Congenital Heart Disease Care in Canada: Has Quality of Care Improved in the Last Decade?

BackgroundPatients with adult congenital heart disease (ACHD) are at increased risk of comorbidity and death compared with the age-matched population. Specialized care is shown to improve survival. The purpose of this study was to analyze current measures of quality of care in Canada compared with those published by our group in 2012. MethodsA survey focusing on structure and process measures of care quality in 2020 was sent to 15 ACHD centres registered with the Canadian Adult Congenital Heart Network. For each domain of quality, comparisons were made with those published in 2012. ResultsIn Canada, 36,708 patients with ACHD received specialized care between 2019 and 2020. Ninety-five cardiologists were affiliated with ACHD centres. The median number of patients per ACHD clinic was 2000 (interquartile range [IQR]: 1050, 2875). Compared with the 2012 results, this represents a 68% increase in patients with ACHD but only a 19% increase in ACHD cardiologists. Compared with 2012, all procedural volumes increased with cardiac surgeries, increasing by 12% and percutaneous intervention by 22%. Wait time for nonurgent consults and interventions all exceeded national recommendations by an average of 7 months and had increased compared with 2012 by an additional 2 months. Variability in resources were noted across provincial regions. ConclusionsOver the past 10 years, ACHD care gaps have persisted, and personnel and infrastructure have not kept pace with estimates of ACHD population growth. Strategies are needed to improve and reduce disparity in ACHD care relative to training, staffing, and access to improved care for Canadians with ACHD.

Impact of Telehealth on Failure to Attend Rates and Patient Re-Engagement in Adult Congenital Heart Disease Clinic

The coronavirus disease 2019 (COVID-19) pandemic paved the way for telehealth consultations. We aimed to determine the impact of telehealth on rates of failure to attend (FTA) in adult congenital heart disease (ACHD) clinics and whether telehealth could re-engage patients with previous FTA face-to-face appointments. This was a retrospective audit of a tertiary ACHD clinic over a 12-month pre-telehealth (26 March 2019-17 March 2020) and 12-month post-telehealth implementation period (24 March 2020-16 March 2021). Patients with one or more FTAs during the 24-month study period were included. Our ACHD clinic is run three times per month. Patients with ACHD are offered lifelong follow-up and reviewed annually on average. Re-engagement was defined as two or more consecutive face-to-face FTAs immediately before the telehealth period with subsequent attendance of their telehealth appointment. A total of 359 patients with a total of 623 FTAs were included. Complexity of congenital heart disease was moderate in 56% (202/359) and severe in 19% (69/359) of patients. Overall FTA rate was 18% (623/3,452). FTA rate was significantly lower in the post-telehealth period (15%, 257/1,664) compared with the pre-telehealth period (20%, 366/1,788) (p<0.00001). At study conclusion, 1% of patients had died (5/359). Of the 354 remaining patients, 42% (150/354) were considered lost to follow-up (two or more FTAs including telehealth), 37% (132/354) missed only one clinic appointment, and 20% (72/354) previously considered lost to follow-up had re-engaged in the telehealth period. Rates of FTA in a tertiary ACHD clinic significantly reduced after the introduction of telehealth consultation. A fifth of patients considered lost to follow-up were re-engaged with telehealth. Additional strategies to further reduce FTA should be explored.

Long-Term Outcomes and Characteristics Associated With Mortality of Adult Patients Post Fontan Surgery: 27-Year Single-Center Experience

Data on the characteristics and long-term outcomes of patients who underwent Fontan surgery and surviving into adulthood are limited. We aimed to describe our center's long-term experience with this unique patient population. Included were adult patients who had undergone Fontan surgery and were followed up at our Adult Congenital Heart Disease clinic between the years 1994 and 2021. We describe cardiac and noncardiac morbidities, medical treatment, laboratory data, echocardiographic characteristics, and all-cause mortality. The primary outcome was a composite of heart failure hospitalizations or death. A total of 107 patients who underwent Fontan surgery were followed up during the study period; 46.7% were male. The mean age at time of Fontan was 7.4 ± 6.2years and the mean age at the last follow-up or at the time of an outcome event was 35.0 ± 8.0years (range 21.1 to 62.8). At the last documented follow-up, 74.7% of the cohort were in New York Heart Association functional class I/II. The common morbidities included atrial arrythmias (37%) and stroke (17%). The primary outcome occurred in 17.7%. By the end of the study period, 9.3% of the patients in the cohort died. In a multivariate logistic regression analysis, controlling for gender, age, and Fontan type, worse functional class at the last follow-up (New York Heart Association III/IV vs I/II) was significantly associated with the risk of the primary outcome (odds ratio 34.57, 95% confidence interval 6.728 to 177.623, p <0.001). In conclusion, long-term outcomes of patients surviving into adulthood with a Fontan circulation is encouraging. Most of these patients achieve good functional cardiovascular status, despite the complex anatomy and a substantial burden of co-morbid conditions, specifically, atrial arrythmias and thrombotic events. Functional class was independently associated with heart failure hospitalizations and mortality.

Factors Associated With Nonattendance at the Adult Congenital Heart Disease Clinic

Adults with congenital heart disease (CHD) are a complex population for whom adult CHD-specific care results in better outcomes. Our objective was to identify factors associated with no-shows and cancelations in an adult CHD (ACHD) clinic and evaluate the efficacy of a social worker intervention to promote ambulatory follow-up. The medical record identified adults with a scheduled appointment in the adult CHD clinic from January 2017 to March 2021. Social worker intervention was performed between March 2020 and May 2021 and consisted of phone calls to those who did not show up. Logistic regression and descriptive statistics were performed. Of 8,431 scheduled visits, 56.7% were completed, 4.6% were no-shows, and 17.5% were canceled by patients. The factors associated with no-shows were Medicaid (odds ratio [OR] 1.63, 95% confidence interval [CI] 1.26 to 2.12, p <0.001), previous no-show (OR per 1% increase in previous no-show rate 1.13, 95% CI 1.12 to 1.15, p <0.001), satellite clinic location (OR 3.15, 95% CI 2.06 to 4.74, p <0.001), virtual visit (OR 1.97, 95% CI 1.28 to 2.92, p=0.001), and Hispanic ethnicity (OR 1.48, 95% CI 1.03 to 2.10, p=0.031). The factors associated with cancelations were female gender (OR 1.45, 95% CI 1.25 to 1.68, p <0.001) and virtual visits (OR 2.24, 95% CI 1.50 to 3.40, p <0.001). Social worker outreach calls did not impact frequency of rescheduling. No patients accepted additional support. In conclusion, Medicaid insurance, previous number of no-shows, and Hispanic ethnicity were found to be associated with a higher risk of no-show, identifying a high-risk population that may benefit from targeted interventions. Social worker outreach did not have an appreciable impact on the rescheduling rates.

Burden of morbidity in patients with Ebstein anomaly: a two-country, population-based cohort study including 823 patients

Abstract Background Burden of morbidity in patients with Ebstein anomaly (EA) is to a large extent undescribed. Purpose We conducted an extensive two-country register-based collaboration aiming to describe the burden of morbidity in patients with EA. Methods Patients born in the period 1930–2017 and diagnosed with EA were identified in Danish and Swedish nationwide medical registries and subsequently merged. Each EA patient was matched by birth year and gender with ten controls without congenital heart disease from the general population. Cox proportional hazard regression model was used to compute risk (hazard ratio (HR)) of morbidity (arrhythmia, heart failure, and stroke). Follow-up started at birth. Patients and controls became at risk at birth. Results We included 823 patients and 8,230 matched controls; median follow-up was 13.2 years (interquartile range: 3.5–20.9). In the total EA cohort, 44% (n=366) underwent cardiac surgery, predominantly EA-related surgery (81%) and other congenital cardiac surgery (15%). Approximately half of the cohort had an isolated EA (n=442) and 13% (n=108) had a concomitant atrial septal defect (ASD) only. Patients with non-operated isolated EA had a 9-fold increased risk of arrhythmia and a 5-fold increased risk of heart failure compared with the general population [HR for arrhythmia 9.4 (95% CI: 6.9–12.7) and HR forheart failure 5.2 (95% CI: 3.2–8.3)]. The risk of arrhythmia, heart failure, and stroke among patients with non-operated EA and concomitant ASD was 12.1 (95% CI: 3.0–48.8), 30.6 (95% CI: 3.2–295.2), and 8.2 (95% CI: 0.7–91.2), respectively. The risk of stroke in operated EA patients with concomitant ASD was 43.8 (95% CI: 17.5–109.7). Patients with operated isolated EA had a 25-fold increased risk of developing arrhythmia and 10-fold increased risk of heart failure compared with the general population [HR for arrhythmia 25.0 (95% CI: 17.7–35.3) and HR for heart failure 10.1 (95% CI: 6.0–16.9]. Conclusion Patients with EA carries a substantial burden of arrhythmia, heart failure, and stroke compared with the general population irrespective of treatment pathway, necessitating meticulous follow-up in specialized adult congenital heart disease clinics to detect and possibly prevent or limit morbidity at an early stage. Funding Acknowledgement Type of funding sources: Foundation. Main funding source(s): Novo Nordic Foundation.

ADULT CONGENITAL HEART DISEASE HEALTH SERVICES IN CANADA-WHERE HAVE WE COME IN THE PAST 15 YEARS

ADULT CONGENITAL HEART DISEASE HEALTH SERVICES IN CANADA-WHERE HAVE WE COME IN THE PAST 15 YEARS

VIRTUAL PEER-TO-PEER MENTORING FOR ADOLESCENTS WITH CONGENITAL HEART DISEASE: AN IMPLEMENTATION STUDY

Congenital heart disease (CHD) is the most common birth defect in Canada, affecting approximately 1 in every 100 children. Adolescents with CHD (AWCHD) must learn to independently manage their disease and transition to adult care, yet many young Canadians fail to attend an adult CHD clinic. Patients who do not receive follow-up care have increased risks of requiring urgent interventions and hospital admission. Interventions designed to support coping and self-management are key strategies to improve the ability of AWCHD to manage their health and successfully transition to adult care.

The Critical Transfer From Paediatrics to Adult Care in Patients With Congenital Heart Disease: Predictors of Transfer and Retention of Care.

Congenital heart disease is the most common congenital birth defect and presents with differing degrees of complexity. Patients require lifelong specialized care. The transfer from paediatric to adult care is a time of risk that may result in lapses or loss of care. A successful transfer from paediatric to adult care is integral for improved patient outcomes. In this retrospective study, we used the paediatric cardiology database and the electronic records at the adult congenital heart disease (ACHD) clinic to identify referrals and successful transfer between 2008 and 2017. Successful transfer was defined as a patient referred to the ACHD clinic who was seen in the clinic and has ongoing follow-up. We also sought to identify predictors of a successful transfer. A total of 555 patients were referred to the ACHD clinic (2008-2017). Of all patients referred, 62% had a successful transfer and an ongoing specialist care. The remaining 38% either did not show for first appointments or missed 3 consecutive visits. Independent predictors of a successful transfer were the presence of moderate or complex ACHD, residing within the city limits, older age at the time of referral, and a more recent year of referral. Over one-third of patients did not achieve successful transfer, namely attendance at first clinic visit plus early retention in care. We were able to identify several variables that predict successful transfer. Further research is required to identify interventions that can be implemented to reduce lapses in patient care.

Effect of multiple births on cardiac status of women with congenital heart disease: A matched case-controlled study

BackgroundWomen with congenital heart disease (CHD) are at risk for peripartum cardiac deterioration. Previous studies focused on women after one or two pregnancies. We investigated effects of multiple births on maternal cardiac status by comparing women with CHD and ≥3 live births to women with <3 live births. MethodsParticipants were identified from the Adult CHD clinic (2010–2018). Women with CHD and ≥3 live births were matched with women with <3 live births and similar CHD and age (±5 years). New York Heart Association class (NYHA), and cardiac impairment on echocardiography, scored by a cardiologist blinded to parity, medication, and arrhythmia were compared. ResultsFor 58 women in 29 matched pairs mean age was 42.4 (SD 14.2). Pregnancy modified WHO risk score was mild (I,II) in 71% and moderate-severe (II-III-IV) in 29%. Mean number of births was 1.2 (SD 0.8) for <3 live births group, 5 (SD 2.3) for ≥3 live births group. Mean difference in live births between pairs was 3.8 (SD 2.5). Seventeen (58.6%) pairs had concordant NYHA for women with ≥3 live births and those with <3 live births. Echocardiography score was concordant in 19 (65.5%) pairs. Women with ≥3 live births had lower NYHA in 8 (27.6%) pairs and lower echocardiography scores in 6 (20.6%) pairs. Differences were not significant (p = 0.129, p = 0.801). No difference was found in medication use or arrhythmia. ConclusionsCardiac status was not different for women with mainly mild-moderate CHD when comparing women with ≥3 live births to those with <3 live births.

Ambulatory Care in Adult Congenital Heart Disease-Time for Change?

Background: The adult congenital heart disease (ACHD) population is growing in size and complexity. This study evaluates whether present ambulatory care adequately detects problems and considers costs. Methods: A UK single-centre study of clinic attendances amongst 100 ACHD patients (40.4 years, median ACHD AP class 2B) between 2014 and 2019 and the COVID-19 restrictions period (March 2020–July 2021). Results: Between 2014 and 2019, there were 575 appointments. Nonattendance was 10%; 15 patients recurrently nonattended. Eighty percent of appointments resulted in no decision other than continued review. Electrocardiograms and echocardiograms were frequent, but new findings were rare (5.1%, 4.0%). Decision-making was more common with the higher ACHD AP class and symptoms. Emergency admissions (n = 40) exceeded elective (n = 25), with over half following unremarkable clinic appointments. Distance travelled to the ACHD clinic was 14.9 km (1.6–265), resulting in 433–564 workdays lost. During COVID 19, there were 127 appointments (56% in-person, 41% telephone and 5% video). Decisions were made at 37% in-person and 19% virtual consultations. Nonattendance was 3.9%; there were eight emergency admissions. Conclusion: The main purpose of the ACHD clinic is surveillance. Presently, the clinic does not sufficiently predict or prevent emergency hospital admissions and is costly to patient and provider. COVID-19 has enforced different methods for delivering care that require further evaluation.

Clinical Features and Outcomes in Adults With Childhood Repair of Partial Atrioventricular Septal Defect

BackgroundPartial atrioventricular septal defects (pAVSDs) are mostly repaired in childhood; however, there are limited data describing these patients in adulthood. ObjectivesThe objective of this study was to describe clinical course and associations with outcomes in adults with repaired pAVSDs. MethodsA retrospective review of adults (≥18 years) with pAVSDs repaired in childhood who presented to the Adult Congenital Heart Disease Clinic at our institution was conducted. ResultsOf 121 patients, the median age was 31 years (IQR: 22-43 years) and 71.9% were female. The median number of operations at the time of presentation was 1 (IQR: 1-2). Left atrioventricular valve (LAVV) replacement had been performed in 19.8% of patients. Among those with native LAVV, 41.2% had ≥ moderate regurgitation. Atrial arrhythmias were present in 34.7% and were associated with later age at repair (P = 0.02) and a high number of prior surgeries (P = 0.005). Estimated systolic pulmonary artery pressure >40 mmHg was seen in 19.8%. Over 4 (IQR: 1-12) years of follow-up, death occurred in 13 (10.7%) patients and reoperation was required in 39.7%. One-third had a LAVV prosthesis by the end of the study. Atrial fibrillation was independently associated with death or hospitalization on multivariable analysis. ConclusionsIn this cohort of adults with pAVSDs repaired in childhood, atrial fibrillation was common at a young age and associated with worse outcomes. Thus, more studies are needed evaluating the cause of this arrhythmia burden and possible associated atrial myopathy. While many require surgery in adulthood, more information is needed regarding indications for and impacts of LAVV intervention as one-third had an LAVV prosthesis by the end of follow-up.

Abstract 11667: Factors Associated With No-Show and Cancellations at Adult Congenital Heart Disease Clinic

Introduction: Many adults with congenital heart disease (ACHD) do not regularly access cardiology care; this has been associated with adverse outcomes. Clinic no-shows and cancellations limit access to care, and identify a population in need of intervention to improve engagement with care. We investigated factors associated with no-shows and cancellations in our academic ACHD clinic which draws from a large catchment area in Oregon, Washington, Idaho and California. Methods: The electronic medical record was queried to identify individuals ≥ 18 years of age with a scheduled appointment in the ACHD clinic from 2017-2020. Demographic and scheduling characteristics were recorded. Multivariate logistic regression was used to test for an association between variables and either no-show or patient-initiated cancellation. Results: Our sample included 7616 scheduled visits, and 4191 (55.0%) were completed. There were 332 (4.4%) no-shows and 1320 were canceled by the patient (17.3%). Factors associated with an increased risk of no-show to clinic were Medicaid (OR=1.86 (95% CI: 1.39, 2.49), p&lt;0.001), prior no-show (OR per 1% increase in prior no-show rate 1.13 (95% CI: 1.13, 1.45), p&lt;0.001), and an appointment at an off-site clinic (OR 2.16 (95% CI: 1.32, 3.45), p=0.002). Factors associated with an increased risk of a cancellation were in-person vs. virtual visits (OR 1.89 (95% CI 1.44, 2.53), p&lt;0.001) and being an established patient (OR 1.38 (95% CI 1.17, 1.63), p&lt;0.001). Patient age, day of the week, and appointment time were not associated with no-shows or cancellations. Discussion: Medicaid insurance, prior no-show, and off-site clinics are associated with a higher risk of no-show to ACHD clinic. As ACHD remains a limited resource, and lack of ACHD follow-up is associated with adverse events, limiting no-shows and canceled visits is an important goal. This study identifies a high-risk population which may benefit from targeted interventions to improve access to care.

Longitudinal Trends in Body Mass Index for Adults with Congenital Heart Disease.

Obesity is a modifiable, independent risk factor for adverse long-term outcomes in children and adults. Our objective was to determine the prevalence of overweight and obese status in a cohort of adults with congenital heart disease (CHD) as well as to assess longitudinal trends over a 20-year period. The study group consisted of patients 18years of age and older followed at our adult CHD clinic. Body mass index (BMI) data were collected from our index period, consisting of patient encounters from 2009 to 2012 (Period 2), as well as during 2000-2003 (Period 1) and 2017-2020 (Period 3) when available. The study cohort was subdivided into three groups per published guidelines: simple, moderate, and greater CHD complexity. The prevalence of obesity and overweight status was compared among the different groups as well as with published data (NHANES). Our cohort in Period 2 consisted of 261 subjects. The median age (25-75% interquartile range) for Period 2 was 27.6 (21.1-35.9) years and BMI was 25.2 (21.7-30.0) kg/m2 with 8.0% underweight, 40.0% with normal weight, 27.0% overweight, and 25% obese. 95 patients had follow-up data from each time period, with 96% of patients having moderate or greater complexity of CHD. The combined percentage of overweight and obese patients for the moderate and greater complex CHD groups increased from 42 and 37% in period 1 to 60% and 65% in period 3, respectively. The percentage of obese patients with moderate and greater CHD complexity increased by 250% and 55%, respectively, from Period 1 to 3. Our study cohort had a high prevalence of overweight and obese weight status. Given adults with CHD have high baseline cardiovascular morbidity, the presence of obesity can increase their risk for poor outcomes, highlighting the need for prevention of this modifiable risk factor.

Cause of death in adult patients with congenital heart disease: experiences of a tertiary centre

Abstract Background We are currently facing a growing and aging population of adults with complex congenital heart disease. However, long-term survival in these patients remained reduced. Purpose To identify the main causes of death and compare mortality based on the complexity of the underlying congenital heart defect. Methods Patients with at least one visit in our adult congenital heart disease (ACHD) clinic between 2010 and 2020 were reviewed. Clinical data were obtained from digital medical records. Based on the complexity of the underlying heart defect patients were classified as mild, moderate, and severe. Data about the median age at death in the general population was collected from the National Statistical Office. Survival difference between the groups was analysed using the Kaplan-Meier method along with the log rank test. Results We included 2658 patients (53% female, overall median age of 35.6 years) with severe (21.2%), moderate (46.2%), and mild (32.6%) lesions. Over the median follow-up of 8.5 years (IQR 5.2–12.2) 125 patients (4.7%) died with an incidence of 0.51 deaths/100 patient years. The median age at death was 39.1 years (severe: 37.2 years, moderate: 50.3 years, mild: 83.1 years, p&amp;lt;0.001) Heart failure was the leading cause of death (35.2%) followed by non-cardiac causes (12.8%), perioperative/periprocedural death (11.2%), arrhythmia (7.4%), sudden cardiac death (4.1%) and endocarditis (2.4%). Heart failure related death was the most likely present in severely complex lesions (mild: 2.3%, moderate: 13.6%, severe: 84.1%). Underlying CHD with the highest mortality were univentricular heart (26.3%), pulmonary atresia (24.3%), Eisenmenger syndrome (22.7%), Ebstein anomaly (15.2%), and transposition of the great arteries after Senning procedure (13.4%). Conclusions Adult patients with moderately to severely complex congenital heart disease die at a relatively young age. The highest mortality rates were observed in patients with severely complex defects, with heart failure being the most common cause of death. Funding Acknowledgement Type of funding sources: None. Kaplan-Meier survival curve

Barriers to care in urban and rural dwelling adults with congenital heart disease

Adults with congenital heart disease (CHD) face a unique set of medical, psychological, and social challenges, and access to specialised adult congenital heart disease care has been associated with improved outcomes. Rural adults with CHD may represent a uniquely disadvantaged group given additional challenges when accessing specialised care. The aim of this study was to investigate the challenges faced by adults with CHD in accessing outpatient cardiac care, with a specific focus on understanding differences between urban- and rural-dwelling patients. This cross-sectional, survey-based study took place in the adult congenital heart disease clinic at an urban academic medical center. Additional medical information was abstracted in a retrospective manner from the electronic health record. In addition to descriptive statistics, t-tests and Chi-square tests were performed to investigate differences between urban and rural dwelling patients. A total of 100 patients participated in the study (mean age 40±13 years, 60% female, 18% rural dwelling). Across the total sample, the median driving distance to clinic was 20 miles (interquartile range 12-77); it was 15 miles for urban dwellers and 77 miles for rural dwelling patients (p < 0.001). The most commonly identified barriers to cardiac clinic visits were financial losses related to taking time off from work (39%), distance of clinic from home (33%), and weather (33%). Compared to urban dwelling patients, on average those who were rural dwelling had a lower level of education (p = 0.04), more difficulty paying insurance premiums (p < 0.001) and copays (p = 0.005), and were more likely to identify the distance from clinic (p = 0.05) and having to go into the city (p = 0.02) as barriers to clinic appointments. The financial impact and distance to clinic were the most commonly identified barriers to outpatient cardiac care in this cohort of adults with CHD. These barriers, along with difficulty paying insurance premiums, are more common in rural dwelling patients. Initiatives such as telemedicine visits or providing financial subsidies for travel and treatment could help to expand specialty adult congenital heart disease care and better serve this growing patient population.

Population and Resource Utilization Among Patients With Adult Congenital Heart Disease: A Snapshot View of a Moderate-Size Canadian Regional Centre

BackgroundHealth care resource utilization for patients with adult congenital heart disease (ACHD) has not been well characterized outside of large Canadian specialized regional centres. We sought to describe the ACHD population and resource utilization patterns seen in a medium regional Canadian centre providing specialized ACHD care. MethodsA cross-sectional retrospective study was done from a sample of patients seen in 2018 at the ACHD clinic in Manitoba, Canada. Demographic data were collected along with cardiac anatomy and repair type. Health care resource utilization, clinic visits, hospital admissions, unexpected hospital presentations, and cardiac interventions were measured over a 5-year period. ResultsA random sample of 262 patients was selected from our specialized ACHD clinic. Mean age was 33.5 (±13.7) years; 48% of the population was female, and >50% resided within the major city limits. A total of 21% of the population had simple anatomy, 44% had moderate anatomy, and 35% had complex anatomy. The most commonly used imaging modality was echocardiography, followed by cardiac magnetic resonance imaging, with more frequent imaging done in patients with complex anatomy. Unexpected hospital encounters occurred at a rate of 16 per 100 person-years. Total inpatient hospital days occurred at a rate of 33 per 100 person-years, and visits to the congenital clinic occurred at a rate of 90 per 100 person-years. ConclusionsHealth care resource utilization appears to be highest in older adults and those with more complex ACHD anatomy. As the overall cohort of adults with ACHD continues to age, resource needs are likely to increase.

Are missed appointments in an outpatient clinic for adults with congenital heart disease the harbinger for care gaps?

Life-long follow-up is vital for patients with congenital heart disease (CHD) to safeguard longevity. Missing scheduled appointments might be prodromal to subsequent care gaps, but our understanding of their occurrence and impact is limited. This study determined the occurrence and predictors of missed appointments (MA), assess its predictive value for care gaps, and explored if MA or care gaps are associated with increased mortality. From 2007 to 2009, the occurrence of MA in 2075 CHD patients was documented at an adult CHD clinic. The frequency of outpatient visits in 1363 adults with moderate to complex CHD was calculated from 2009 to 2012. Patients without a visit were considered to have a care gap. Data on mortality were collected from 2013 to 2017. Missed appointments occurred in 11% of patients and were more common in men [odds ratio (OR) = 1.57; 95% confidence interval (CI): 1.18-2.08], without a history of cardiac procedures (OR = 1.46; 95% CI: 1.08-1.97), and for morning visits (OR = 1.45; 95% CI: 1.10-1.92). Care gaps were identified in 6% of moderate to complex CHD. A MA was significantly associated with an increased likelihood of care gaps (OR = 19.55; 95% CI: 11.92-32.07; R2 = 26.5%). In moderate to complex CHD, no difference in mortality rates was related to the occurrence of discontinued care. The occurrence of MA was related to patients' gender, no history of cardiac interventions, and time of day of the outpatient visits. Care gaps were associated by the preceding MA. No association with increased mortality rates was observed. Interventions reducing missed appointments, such as SMS-reminders prior to visits, need investigation.

Improved Clinic Attendance Rates With Introduction of Telehealth in a Tertiary Adult Congenital Heart Disease Clinic

Improved Clinic Attendance Rates With Introduction of Telehealth in a Tertiary Adult Congenital Heart Disease Clinic