Abstract
The objectives of the study are (1) to define and rank patient outcomes that patients with heart failure (HF) value the most in medical care and (2) to better understand patients’ expectations in terms of care organization and patient support (services and tools). An observational study was conducted from January to February 2018 via the French Carenity platform, an online patient community. Adult patients with heart failure were invited to complete an online questionnaire. Treatment effectiveness is not assessed in this study. 67 patients with heart failure answered the questionnaire. 64% are men, with a mean age of 62.6 (95%CI: 60.3-65.0) years. 85% are limited in their physical activity (10% severely limited). 90% are taking an oral treatment and 48% follow hygiene and dietary rules. 18% of the patients have a cardiac device. The aspect of life that both matters the most for patients (ranked 2nd best, on average) and is the most impacted by heart failure (mean: 3.3/5 with 5 meaning the highest impact) is the ability to be physically active. Access to innovative treatments and medical devices is one of the most valuable (ranked 2nd best, on average) and at the same time, the least satisfactory elements (mean: 3.1/5 with 5 meaning the highest satisfaction level). Moreover, connected medical devices should be developed because they are highly expected (ranked 2nd best, on average) and not very accessible (3rd least accessible, on average). Patients are also moderately satisfied with them (mean: 2.3/5). Information about scientific news (clinical trials, innovative treatments and devices) is expected (ranked 2nd best, on average) and quite satisfactory (mean: 2.4/5). Access to innovative medical devices and treatments, especially those that are connected, needs to be improved as they may preserve the ability of patients with HF to be physically active.
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