Short summary

CHF is a disease with inconvenient symptoms, which can lead to reduced QoL. Studies have shown that patients with CHF have a higher QoL if they have knowledge of the disease and treatment, and can respond to symptoms of deterioration. It is found that technology can be a useful tool to increase QoL, but there is lack of knowledge about the extent to which patients' empowerment increases through use of technology, especially among elders, and in what way the knowledge should be disseminated.

Rationale

Introduction Chronic heart failure (CHF) is a common, progressive and symptomatic illness with an average survival rate of approximately five years. Prognosis can be difficult to predict, as it depends on gender, age, comorbidity and stage of illness at the time of diagnosis. The most frequent clinical symptoms are dyspnea, fatigue and edema, which is often perceived as being disabling and causing reduced Quality of Life (QoL). In order to provide patients and their relatives with an increased understanding of CHF, different types of home monitoring systems have been developed including virtual technology. Despite positive results with home monitoring, it is not currently an option available in all outpatient clinics in Denmark. Moreover, it is known that technology has the greatest impact if it is developed in collaboration with those who need it, which is neither a frequently used method, nor is it well described in relation to CHF. This indicates a potential opportunity for improving existing treatment options for patients suffering from CHF by developing a solution in collaboration with the end-users.

Background Over the past 20 years, the incidence of CHF has decreased, while the prevalence has increased meaning that patients are living longer with heart failure today than they did previously. In 2014, approximately 9,000 people were diagnosed with CHF in Denmark, while 66,000 people were living with heart failure. One of the reasons is that the existing medical treatment of CHF is successful in prolonging lives and reduce the symptom burden. In addition to the medical treatment, it is proven that knowledge of worsening symptoms and how to respond to symptoms improves patient self-care behavior and QoL. Furthermore, awareness of worsening symptoms has shown tendency in reducing readmissions.

Several studies have tested various types of technological solutions for patients with different heart diseases. Common to the studies is that a technological solution is beneficial, because it makes the patients aware and reminds them to be involved in their own disease. Some studies with CHF patients have focused on home monitoring of different measurements such as: weight, lung impedance, blood pressure, heart rate, and pulse. In addition, the studies used different questionnaires to measure symptoms, QoL and self-care, and one study also used automatic algorithms with suggested actions. Vestergaard et al has proven a technological solution as being cost-effective, with a significant cost saving on admissions, primary care contacts and total costs. The patients with CHF where asked to measure blood pressure and weight twice a week within one year of follow-up resulting in a reduction of 35% in total healthcare costs. At the same time, Pedersen et al found that it can be difficult for older people to deal with new technology, and it might be confusing to understand and learn from technology. Despite of this knowledge, investigating the effect of increasing empowerment by using alternative forms of learning from technology is not found in the literature. As incidences of CHF increase with age, technological solutions, which aims to increase empowerment and QoL, must be widely inclusive, particularly for the elderly. One proposal could be producing podcasts and videos with information about disease, symptoms, medicine, side effects etc. Furthermore, it is a fact that relatives often suffer as much or even more than the patient, and there is a lack of information on how a technological solution affects the relatives, and what is needed to empower them in a vulnerable situation.

Aim and objectives The overall aim of this PhD project is to improve patient empowerment and QoL of patients with CHF by exploring current practice of CHF management in the outpatient clinic. Furthermore, the project will develop a customized solution and determine if the solution is feasible in close collaboration with the users (patients, relatives and healthcare professionals) and explore the relevant enabling technology.

The objectives of the study are to: o Explore current clinical practice in the outpatient clinic focusing on patients with CHF and investigate the needs of patients and relatives as well as the perspectives of healthcare professionals. o Design and develop a solution/ technology based on identified needs. o Test the solution/ technology in clinical practice and evaluate if it is feasible, suitable and acceptable.

Description of the cohort

Participants will be eligible patients discharged from the cardiology ward or associated with the outpatient heart failure clinic, OUH, Svendborg Hospital, diagnosed with Heart Failure with reduced Ejection Fraction (HFrEF), LVEF <40%.

Data and biological material

Questionnaire data, interviews, demografic data

Collaborating researchers and departments

Internal Medicine & Emergency Department M/FAM OUH, Svendborg Hospital

• Professor Kenneth Egstrup
• Associate Professor Anne Dichmann Sorknæs

Center for Innovativ Medicinsk Teknologi (CIMT)

• Associate Professor Mette Juel Rothmann