Ehealth in adults with a congenital heart defect: current and future perspectives
Dirkjan Kauw defended his thesis in 2021. The aim of this thesis was to investigate the use of eHealth in the care of adult patients with congenital heart disease (ACHD) and its current and future perspectives. The benefits and challenges of using eHealth in daily practice in ACHD patients were examined and patient groups were identified that could potentially benefit from the use of eHealth.
Below is a summary:
* We explored the benefits of using different eHealth applications in the care of ACHD patients. Our literature review showed that there is still limited data on the use of eHealth applications in ACHD patients and that most studies to date have focused on pediatric patients. The most widely used application of eHealth in ACHD patients was the home monitoring of infant body weight and oxygen saturation between corrective surgeries. These studies showed positive results: Better survival, fewer complications and an improved nutritional status. These results show that the use of eHealth applications in ACHD patients can show promise and make a positive contribution to the daily care of these patients.
* We examined the experiences of users of eHealth telemonitoring programs and identified the challenges that need to be overcome to improve future eHealth programs. To this end, we conducted semi-structured interviews with cardiologists, nurses, patients, healthcare managers and IT developers and consulted a lawyer to identify key regulatory hurdles for these programs. This showed that different challenges were experienced in the different subgroups, indicating that collaboration between all parties involved is essential for a successful implementation of an eHealth.
* We described a clinical registry study in which we enrolled ACHD patients in an eHealth program, where body weight, blood pressure and heart rate were monitored weekly. In this study, we demonstrated several clinical benefits of the eHealth program, including new diagnoses of arrhythmias and hypertension, and medication adjustments were made between outpatient visits based on the measurement data. However, we found no benefit of eHealth with regard to
to clinical outcomes such as hospitalizations, emergency room visits and telephone contacts. Since this registry study used historical data from the included patients for comparison, these results should be interpreted with caution. Therefore, randomized studies are needed to further investigate the effect of eHealth use on clinical outcomes in ACHD patients.
* We described a clinical registry study in which we enrolled ACHD patients in an eHealth program, where body weight, blood pressure and heart rate were monitored weekly. In this study, we demonstrated several clinical benefits of the eHealth program, including new diagnoses of arrhythmias and hypertension, and medication adjustments were made between outpatient visits based on the measurement data. However, we found no benefit of eHealth with regard to clinical outcomes such as hospitalizations, emergency room visits and telephone contacts. Since this registry study used historical data from the included patients for comparison, these results should be interpreted with caution. Therefore, randomized studies are needed to further investigate the effect of eHealth use on clinical outcomes in ACHD patients.
* We provide some considerations regarding initiating remote care during the COVID-19 pandemic. To prevent infections, face-to-face contacts between doctor and patient are deleted as much as possible. For chronic cardiac patients in particular, this means that care must be delivered in a different way. eHealth can be used to provide this care remotely, for this we have provided a number of considerations in order to provide this care in the best possible way and to overcome barriers such as data security and clinical assessment of the patient.
* We have shown that adult patients with Tetralogy of Fallot (ToF) or pulmonary atresia with ventricular septal defect (PA/VSD) with 22q11.2 deletion syndrome (22q11.2DS) have an increased risk of mortality. These results show that genetic analysis for the presence of 22q11.2DS in patients with TOF or PA/VSD is very important. 22q11.2DS is sometimes not recognized in patients, indicating that 22q11.2DS is difficult to diagnose based on clinical features alone. In addition, genetic analysis helps to identify high-risk patients and improves the physician's ability to provide these patients with risk stratification and genetic counseling. eHealth may provide more personalized and continuous care in the home environment for these patients.
* We examined the association between specific personality traits, namely a type D personality, and the risk of death in ACHD patients. In 2009, a large study was conducted in which a national cohort of more than a thousand ACHD patients completed questionnaires to determine the presence or absence of type D personality. The relationship between the presence of a type D personality and the use of health care, quality of life and self-perceived health status was examined. In our follow-up study, we showed that patients with a type D personality have a significantly worse survival than patients without type D. In addition, patients with type D reported more co-morbidities at study entry, while they were also more likely to be single and unemployed. These differences in patient characteristics indicate that patients with type D personality may require a more personalized follow-up strategy than ACHD patients without type D. Currently, limited data are available on tailor-made interventions for patients with type D personality. eHealth could provide such tailor-made follow-up through home monitoring and remote reassurance.