Introduction
Over past decades the life expectancy of children with congenital heart disease (CHD) has increased dramatically, mainly due to the successes of cardiac surgery [
1]. At present, nearly all children with CHD can be operated on at young age and more than 95 % reach adulthood. However, many adults with CHD are affected lifelong by cardiac symptoms, reduced quality of life, and cardiac events [
2‐
6]. These events often merit medical therapy, percutaneous interventions, and open-heart surgery to improve survival and quality of life [
1,
6‐
8]. Consequently, adults with CHD are frequently admitted to hospital, entailing high health-related and non-health-related costs to the affected individuals, employers, and to society at large.
Care of adults with CHD is mainly organised at an outpatient clinic. Patients with CHD are usually under lifelong outpatient surveillance. These outpatient visits are brief evaluations of clinical status, patient education and treatment strategies and include an ECG, cardiac imaging and short-term monitoring; such as 24- or 48-hour blood pressure measurements. These outpatient evaluations are only momentary snapshots. The frequency of outpatient visits ranges from a few times a year to once every five years [
2]. Continuous monitoring is rare. Consequently, patients may develop symptoms or signs of deterioration between visits, which could therefore be missed.
Mobile health (mHealth) is the provision of medical care facilitated by mobile technologies capable of delivering health information, monitoring clinical signs and enabling direct care and patient education [
9]. There are many potential uses of mHealth, such as E‑support, E‑care, tele-monitoring, tele-treatment, teleconsultation and tele-diagnosis [
10,
11]; mHealth brings opportunities to stimulate a healthy life style, to remind patients on medication use, and to enhance monitoring in an attempt to improve outcome. However, it is not known if adults with CHD are currently using mHealth or what type of mHealth they will need in the near future.
Discussion
To our knowledge, this is the first report on the readiness of adults with CHD to use mHealth for their condition. The majority of patients with CHD are willing to start using mHealth, but only a small proportion actually uses it currently. All subgroups studied were interested in mHealth, implying that mHealth might be a widely applicable tool in the follow-up of adult patients with CHD.
The adult CHD population is a highly attractive group in which to initiate mHealth initiatives due to their relatively young age, affinity with mobile devices, chronic condition necessitating lifelong surveillance, and the general need to reduce the burden of disease. mHealth has the potential to empower patients and support them in their daily struggles. The additional monitoring of clinical parameters (e. g. heart rate, blood pressure, weight, etc.) might enable physicians and specialised nurses to improve the early recognition of clinical deterioration and to deliver sophisticated patient-tailored care remotely, e. g. titration of diuretics and antiarrhythmic agents. Lifelong surveillance gives clinicians the opportunity to support patients to continue using mHealth. Consequently, mHealth opens opportunities to maintain the motivation to achieve a sustainable improvement. For instance, the short-term beneficial effects of training on exercise capacity in adult patients with CHD have already been demonstrated [
13], but without long-term durability when the training period is over [
14]. Conceivably, mHealth interventions could overcome this limitation by continuous support and motivational tools.
Overall, studies on the efficacy of mHealth initiatives in cardiology are rare. The results of mHealth studies in heart failure patients, carried out in patients with acquired heart disease, are conflicting [
15‐
17]. Some telemonitoring studies using implantable cardioverter defibrillators have demonstrated that telemonitoring enhances life expectancy and reduces the number of related clinical events in heart failure patients [
15]. However, a study using a phone-based telemonitoring system found no differences in all-cause mortality, hospital readmission rates, or readmissions in these patients [
17]. Recently, the American Heart Association (AHA) reviewed a total of 13 mHealth studies on prevention of cardiovascular disease and concluded an absence of efficacy data and data on sustainability of engagement by the individual and thus sustainability of the treatment effect, an issue that is extremely important in managing chronic conditions [
18]. The European Society of Cardiology is facilitating an action plan pertaining to mHealth issues [
9]. This action plan aims at a wider implementation of electronic technology, education and training, in order to play an active role in discussions and to set quality standards. Although adults with CHD are a large group who are particularly suited to mHealth, neither of the position papers comments on this specific patient population.
Both patients and clinicians need to be committed to mHealth interventions in order to achieve long-term impact. In a recent mHealth trial on diet and exercise behaviour in healthy volunteers with an increased risk of atherosclerosis, the dropout rate was as high as 20 % [
19]. Therefore, it is important to seek the right balance between time-consuming data collection and dropout. Adults with CHD could benefit from increased adherence because of the necessity for lifelong surveillance [
2].
Four other important points are safety, privacy, reimbursement and implementation. At this stage, there is a lack of legal clarity and a lack of transparency regarding the utilisation of the data collected [
9]. Data encryption and secured connections are needed to prevent leaks of private data [
9]. Before implementation, clear communications on response time are required to prevent patients waiting for a message from a treating physician. For example, outside office hours the telephone number of the cardiac emergency care unit could be shown if immediate attention is necessary, but there would also be the facility to use mHealth to contact a physician with a reasonable response time of 24 h, for instance. There is also significant physician hesitation about implementing mHealth. Patients could potentially overload physicians and nurses with additional work and medical professionals have concerns about the quality of the data generated by mHealth devices [
11,
20]. Additionally, many physicians are not reimbursed for mHealth. At this stage mHealth is only reimbursed in a limited number of cases, and reimbursement is commonly not in proportion to the time required [
11].
Our study has several limitations. At first, the mHealth questionnaire was confined to a smartphone in order to minimise vagueness about the term mHealth. However, there are many other forms of mHealth. Secondly, the questionnaire was designed by three authors and was not validated.
Conclusion
The adult CHD population rarely uses mHealth, but the majority is motivated to start using mHealth for their condition. These patients seem particularly attractive for new mHealth initiatives because of their young age, affinity with mobile devices, chronic condition with the necessity of lifelong surveillance, and the general need to reduce the burden of disease. New mHealth initiatives are needed to reveal whether a reduction in morbidity and mortality and improvement in quality of life can be achieved with early event recognition and intervention.