Patients’ preferences regarding the digital capturing of patient-reported outcomes: planning the future follow-up in a prospective heart failure registry

Abstract

Background Digital health technologies have the potential to improve patient care sustainably. A digital capturing of patient-reported outcome measures (PROM) could facilitate patients’ surveillance and endpoint assessment within clinical trials especially in heart failure (HF) patients. However, data regarding the availability of digital infrastructure and patients’ willingness to use digital health solutions are scarce. Therefore, we conducted a survey as part of a digital-based HF registry. Methods and results The Helios Heart registry (H2-registry) has been introduced as a prospective registry being based on digitally augmented processes throughout the whole trial conduction from patients’ selection to data collection and follow-up (FU). PROMs are captured paper-based at recruitment, but patients are offered two digital solutions for FU. Overall, 125 patients (mean age 67.8 years, 34.4% female) were included in the single-center run-in phase of 16 weeks. Of them, 52.0% were not interested in any digital contact as part of the FU. If digital PROM capturing was conceivable, a web-based solution (70.0%) was preferred to an application-based approach (30.0%). Discrepancies occurred regarding the availability of email accounts and smartphones. Patients in the non-digital group were older (72.0 years vs. 63.2 years, P < 0.01) and more frequently female (female sex, non-digital vs. digital group: 47.7% vs. 20.0%, P < 0.01). Conclusions Our survey illustrated difficulties of implementing a digital FU to record PROMs in a contemporary HF cohort in particular among older patients. Further research is required to specify reasons in case of patients’ unwillingness and to better tailor digital health solutions to patients’ specific needs.

A Digital Infrastructure for Cardiovascular Patient Care Based on Mobile Health Data and Patient-Reported Outcomes: Concept Details of the Helios TeleWear Project Including Preliminary Experiences

“…The Helios Health Institute constitutes a research institution adjacent to Helios Health GmbH, a large European health care provider, which includes the Helios hospital network consisting of 89 acute care hospitals in Germany. As has been shown previously [ 3 , 13 ], there is considerable restraint among patients with CVD to use health-related mobile technology. Therefore, the initial evaluation of user or patient satisfaction and engagement in the specific tool is a crucial part of implementing novel mHealth solutions.…”

“…Despite the multiple advantages and possibilities of mHealth, some obstacles in implementation could arise with respect to the digital capabilities of distinct patient cohorts. A survey conducted recently in a cohort of patients with HF showed that less than half were interested in a digital solution for PROM capturing in the context of an HF registry and many participants preferred a web-based solution over an app-based solution [ 13 ]. Possible differences in digital capabilities may apply to patients with AF, as first TeleCheck-AF results showed good acceptance of the digital solution in an AF cohort with a median age of 64 years [ 23 ].…”

“…Application and benefits have been thoroughly studied among patients with cardiovascular diseases (CVDs) [ 2 , 3 ], which led to comprehensive position papers focusing on mHealth implementation in subspecialties of cardiovascular (CV) medicine, such as cardiac arrhythmia management [ 4 , 5 ] and CV prevention [ 6 , 7 ]. Patients with heart failure (HF) [ 8 ] and coronary artery disease [ 9 , 10 ] may also benefit from mHealth interventions; however, further research is needed as study results are in part inconsistent [ 11 , 12 ], and limitations with respect to patients’ digital capabilities exist [ 13 ]. Moreover, mHealth technologies are not yet implemented routinely in CVD patient care, mostly due to the lack of solid data [ 14 ].…”

A Digital Infrastructure for Cardiovascular Patient Care Based on Mobile Health Data and Patient-Reported Outcomes: Concept Details of the Helios TeleWear Project Including Preliminary Experiences (Preprint)

“…Application and benefits have been thoroughly studied among patients with cardiovascular diseases (CVDs) [2,3], which led to comprehensive position papers focusing on mHealth implementation in subspecialties of cardiovascular (CV) medicine, such as cardiac arrhythmia management [4,5] and CV prevention [6,7]. Patients with heart failure (HF) [8] and coronary artery disease [9,10] may also benefit from mHealth interventions; however, further research is needed as study results are in part inconsistent [11,12], and limitations with respect to patients' digital capabilities exist [13]. Moreover, mHealth technologies are not yet implemented routinely in CVD patient care, mostly due to the lack of solid data [14].…”