gms | German Medical Science

Introduction: Heart failure (HF) is a complex chronic disease with an increasing prevalence worldwide. It has widespread implications on the quality of life of patients, and can place a high burden on (caring) relatives [1]. Digital solutions offer the opportunity to implement predictive, preventive, and personalised HF care and to support patients and their relatives [2]. As part of the PASSION-HF project (Interreg NWE 702), a decision support system called DoctorME was developed and tested in Germany (DE), the United Kingdom (UK), Ireland (IRL) and the Netherlands (NL) to support patients with HF in their self-care. Thereby, the perceptions of (caring) relatives of HF patients using DoctorME were also analysed.

Methods: A multidisciplinary research team with experts in cardiology, psychology, and sociology from DE, UK, IRL and NL created a questionnaire comprising 25 questions. The written survey covered four dimensions: support, usage behaviour, experiences of relatives and potential for improvement. The questionnaires were distributed to (caring) relatives through the participating patients with HF at the respective clinical sites. Responses were collected from 87 relatives (DE=14; UK=14; IRL=19; NL=40) either on paper or online. Most relatives were spouses (n=75), female (n=69) and between 60-69 years old (n=29). The anonymized analysis was descriptive. The potential for improvement was recorded in a free text field and analysed using a frequency analysis.

Results: Relatives found DoctorME easy to use. Nevertheless, they often (46%) helped with the first steps to help the patient get used to using DoctorME. When comparing countries, relatives from NL and IRL stated that they provided more support. From the relatives' perspective, most patients (88%) used DoctorME as recommended by their physician. More than half of the relatives reported positive effects of DoctorME on health-conscious eating (66%), their relative's (patient's) sense of security in everyday activities (51%) and health awareness (60%). DoctorME also gave most relatives in IRL, NL and UK a reassuring feeling. In DE, relatives were generally more sceptical with less positive perceptions apparent. On a technical level, the suggestions for improvement mainly concerned the optimisation of long loading times (n=5). In terms of content, individualisation of the regular questions (n=3), a lower frequency of vital parameter queries (n=4), faster medical feedback via the chat function (n=3) and the integration and additional monitoring of other parameters (n=3), such as blood values, were requested.

Discussion: DoctorME had demonstrably positive effects on health-promoting behaviour and attitudes from the perspective of relatives. However, a country comparison showed different attitudes towards the benefits of DoctorME. Possible reasons were not analysed. Initial results from the perspective of patients with HF were consistent with the specific improvement potential of relatives.

Conclusion: Relatives see DoctorME as a great opportunity for the self-management of HF-patients and for their own relief. As there is an important link between the perspectives of relatives and patients, DoctorME can be further optimised to meet the needs and requirements of users even better in the future. The results also provide important insights for the development and implementation of other eHealth solutions.

The authors declare that they have no competing interests.

The authors declare that a positive ethics committee vote has been obtained.