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BackgroundArrhythmias and heart failure are common and invalidating sequelae in adult patients with congenital heart disease (CHD). Mobile health (m-Health) enables daily monitoring and a timely response that might prevent deterioration. We present an observational prospective registry to evaluate feasibility of an m‑Health telemonitoring program for managing arrhythmia, heart failure and blood pressure in symptomatic adults with CHD.MethodsSymptomatic adult patients with CHD are enrolled in an m‑Health telemonitoring program, which evaluates single-lead ECG, blood pressure and weight measurements. In case of symptoms extra measurements could be performed. Data are collected by mobile apps, matched with individualised thresholds. Patients are contacted if thresholds were exceeded or if arrhythmias were found, for treatment adjustments or reassurance. Data on emergency care utilisation, hospitalisation and patient-reported outcome measures are used to assess quality of life and self-management.Results129 symptomatic CHD patients were invited to participate, 55 participated. Reasons for refusing consent included too time consuming to participate in research (30) and to monitor vital signs (14). At baseline 22 patients were in New York Heart Association class ≥ II heart failure, 43 patients had palpitations or documented arrhythmias, and 8 had hypertension. Mean follow-up was 3.0 months, one patient dropped out, and adherence was 97%.ConclusionThe first results indicate that this program is feasible with high adherence.

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a b s t r a c tBackground: Scarce data on crowdfunding report a maximal funding of €10.000,-, and state that research is needed to attract attention of larger granting organizations. The aims of this project were 1) to fund an eHealth study in grown-up congenital heart disease (GUCH) patients 2) to contemplate on critical success factors. Methods: After peer review of the Dutch Heart Foundation a project was published at a donation platform, which was open for donations during a predetermined period of two months. Copywriters were hired to create an easy-to-understand message to donors. A video teaser was created with a motivated patient, and rewards were available. The crowdfunding targeted €25.000 and the Dutch Heart Foundation doubled the donations to €50.000, and return of donations were guaranteed in case this was not met. Results: Initially, donations came from the investigators' private inner circle. In total, 44 potential donors were contacted, but refused to donate originally. Multiple (social) media campaigns were published to promote the project, and an offline mailing was sent to contributors to the Dutch Heart Foundation. During the project support emerged, resulting in extra donations and public awareness. In the lasts three weeks, after sufficient private donations, five major donors decided to support the project. The project became a big success: the predetermined target was exceeded and a total of €74.450,was raised. Conclusion: Innovative crowdfunding gave the opportunity to start eHealth research in GUCH patients. Critical success factors include support of a professional organization, support of stakeholders, and easy-to-understand messages.

BackgroundAddison’s disease and Cushing’s syndrome are rare. The Dutch Adrenal Society offers an online forum for Dutch adrenal patients to meet and communicate. However, little is known about the added value such a forum has for the delivery of patient-centered care.ObjectiveOur aim was to analyze the purposes of online patient-to-patient forum conversations, within the context of patient-centered care.MethodsFor this study a consecutive sample of 300 questions (“threads”) from the past 3.5 years was selected from the forum. The content of these patient-driven questions was analyzed based on the dimensions of patient-centeredness of the Picker Institute. This analysis was performed using ATLAS.ti.ResultsFrom the 390 questions analyzed, 80.8% (N=315) were intended to gain more information about the disease, the treatment, and to verify if other patients had similar complaints. To a much lesser extent (38/390, 9.7%), questions expressed a call for emotional support. Patients answered primarily by giving practical tips to fellow patients and to share their own experiences.ConclusionsOn an online patient forum for Cushing’s syndrome and Addison’s disease, patients appear to primarily gain knowledge and, to a lesser extent, emotional support from their peers. This experience-based knowledge has become a very important information source. As such, patients can make a substantial contribution to the creation of patient-centered care if this knowledge is integrated into the care provided by health care professionals.

BackgroundMobile health (mHealth) can improve quality of care and empower cardiac patients. However, large-scale adoption is still lacking, as several challenges continue to be encountered in daily practice. We aimed to explore the mHealth experiences and challenges in cardiac patients, healthcare professionals, healthcare managers and information and communications technology (ICT) developers.MethodsA qualitative research was employed where semistructured interviews were conducted in patients, healthcare professionals, managers and ICT developers. We aimed to enrol participants of every stakeholder group, with diversity in sex, age group and occupation. Thematic analysis was used to identify themes reflecting experiences and challenges in mHealth in cardiac patients.ResultsIn total, 24 interviews were conducted in six patients, eight healthcare professionals, five managers and five ICT developers. Monitoring/care at home was reported as important advantage of mHealth (n=20, 83%). Patients valued increase of self-care (n=6, 100%) and remote reassurance (n=6, 100%), but reported medicalisation as important concern (n=4, 67%). Healthcare professionals warned for increased data burden (n=4, 50%). Managers agreed on the importance of device reliability (n=5, 100%) and ICT developers emphasised that the goal of mHealth is to replace care, rather than being supplementary (n=4, 80%). The majority of all participants (n=22, 92%) considered future use of mHealth as promising.ConclusionsAll stakeholders foresee benefit of mHealth in cardiac patients, especially for remote care and reassurance. Frequently mentioned challenges included the need to replace care with mHealth, rather than adding more workload, and employing reliable devices and applications. If collaboration can be improved and group-specific challenges overcome, success of mHealth in cardiac patients can improve significantly.

Mobile health (mHealth), an advanced form of eHealth is expected to drastically change the field of traditional healthcare in the near future as wearables and mobile applications are rapidly increasing in number. The majority of patients with congenital heart disease (CHD) now reach adulthood and this relative young patient population seems particularly suited for mHealth, as they require lifelong follow-up, experience high morbidity burden, and were raised in this digital era. In patients with acquired heart disease the potential of eHealth has been demonstrated, yet data are still inconclusive. Areas covered: In this review of the current literature we evaluated the effect of various eHealth interventions in patients with CHD. Our search resulted in a mere 10 studies, which comprised mostly of children or adolescents with severe CHD. Home-monitoring of saturation and weight through mHealth was found to be beneficial in patients after palliation procedures, and video conferencing was found to have a positive effect on anxiety and healthcare utilization. Expert commentary: Due to high morbidity and mortality in patients with CHD and the promising results of eHealth interventions, further research is desperately needed.

Purpose Mobile health (mHealth) could improve the outcome of grown-up patients with congenital heart disease (GUCH) and reduce their emergency care utilisation. Inappropriate use of mHealth, however, can lead to data overload for professionals and unnecessary data collection for patients, increasing the burden for both. We aimed to determine the clinical characteristics of patients with high emergency care utilisation and to test whether these patients were willing to start using mHealth. Methods Clinical characteristics and emergency care utilisation of consecutive GUCH patients who visited one of the two participating cardiologists at the outpatient clinic of the Academic Medical Centre in Amsterdam were studied retrospectively. All patients were approached to fill in an mHealth questionnaire. A frequency of three or more emergency visits in 5 years was defined as high emergency care utilisation. Results In total, 202 consecutive GUCH patients who visited one of the two participating cardiologists were studied. Median age was 41 years, 47% were male, and 51% were symptomatic. In the previous 5 years, 134 emergency visits were identified. Of all patients, 8% had high emergency care utilisation. High emergency care utilisation was associated with patients being symptomatic, using antiarrhythmic drugs or diuretics. In total, 75% of all patients with high emergency care utilisation were willing to start using mHealth. Conclusion GUCH patients who are symptomatic, those on antiarrhythmic drug therapy and those on diuretics are suitable candidates for enrolment in future mHealth initiatives because of both high care utilisation and high motivation to start using mHealth.