Patient-Reported Outcomes From Patients With Heart Failure Participating in the Future Patient Telerehabilitation Program: Data From the Intervention Arm of a Randomized Controlled Trial

Cathrine Skov Schacksen, Anne-Kirstine Dyrvig, Nanna Celina Henneberg, Josefine Dam Gade, Helle Spindler, Jens Refsgaard, Malene Hollingdal, Lars Dittman, Kim Dremstrup, Birthe Dinesen, Cathrine Skov Schacksen, Anne-Kirstine Dyrvig, Nanna Celina Henneberg, Josefine Dam Gade, Helle Spindler, Jens Refsgaard, Malene Hollingdal, Lars Dittman, Kim Dremstrup, Birthe Dinesen

Abstract

Background: More than 37 million people worldwide have been diagnosed with heart failure, which is a growing burden on the health sector. Cardiac rehabilitation aims to improve patients' recovery, functional capacity, psychosocial well-being, and health-related quality of life. However, cardiac rehabilitation programs have poor compliance and adherence. Telerehabilitation may be a solution to overcome some of these challenges to cardiac rehabilitation by making it more individualized. As part of the Future Patient Telerehabilitation program, a digital toolbox aimed at enabling patients with heart failure to monitor and evaluate their own current status has been developed and tested using data from a patient-reported outcome questionnaire that the patient filled in every alternate week for 1 year.

Objective: The aim of this study is to evaluate the changes in quality of life and well-being among patients with heart failure, who are participants in the Future Patient Telerehabilitation program over the course of 1 year.

Methods: In total, 140 patients were enrolled in the Future Patient Telerehabilitation program and randomized into either the telerehabilitation group (n=70) or the control group (n=70). Of the 70 patients in the telerehabilitation group, 56 (80.0%) answered the patient-reported outcome questionnaire and completed the program, and these 56 patients comprised the study population. The patient-reported outcomes consisted of three components: (1) questions regarding the patients' sleep patterns assessed using the Spiegel Sleep Questionnaire; (2) measurements of physical limitations, symptoms, self-efficacy, social interaction, and quality of life assessed using the Kansas City Cardiomyopathy Questionnaire in 10 dimensions; and (3) 5 additional questions regarding psychological well-being that were developed by the research group.

Results: The changes in scores during 1 year of the study were examined using 1-sample Wilcoxon signed-rank tests. There were significant differences in the scores for most of the slopes of the scores from the dimensions of the Kansas City Cardiomyopathy Questionnaire (P<.05).

Conclusions: There was a significant increase in clinical and social well-being and quality of life during the 1-year period of participating in a telerehabilitation program. These results suggest that patient-reported outcome questionnaires may be used as a tool for patients in a telerehabilitation program that can both monitor and guide patients in mastering their own symptoms.

Trial registration: ClinicalTrials.gov NCT03388918; https://ichgcp.net/clinical-trials-registry/NCT03388918.

Keywords: Kansas City Cardiomyopathy Questionnaire; adherence; cardiology; cardiomyopathy; compliance; heart; heart failure; monitoring; patient-reported outcome; patients; quality of life; rehabilitation; self-reporting; telehealth; telemonitoring.

Conflict of interest statement

Conflicts of Interest: None declared.

©Cathrine Skov Schacksen, Anne-Kirstine Dyrvig, Nanna Celina Henneberg, Josefine Dam Gade, Helle Spindler, Jens Refsgaard, Malene Hollingdal, Lars Dittman, Kim Dremstrup, Birthe Dinesen. Originally published in JMIR Cardio (https://cardio.jmir.org), 02.07.2021.

Figures

Figure 1
Figure 1
The 3 phases of the Future Patient Telerehabilitation study. PRO: patient-reported outcome.
Figure 2
Figure 2
A screen capture of HeartPortal. An illustration of the patient-reported outcome. Row 1: Information, My Treatment, My Status, Contacts, and Questions; Row 2: Weight, Blood Pressure, Pulse, Breathing, Sleep, Steps, and Well-being; Row 3: Time Intervals (3 months, 6 months, and Entire period); and Row 4 (bottom): Mood (light-green dot), Sleep (dark-green dot), Physical condition (orange dot), Symptom-free (red dot), Social contact (blue dot), and Mean (blue line).
Figure 3
Figure 3
CONSORT (Consolidated Standards of Reporting Trials) diagram for the intervention group of the Future Patient Telerehabilitation trial.
Figure 4
Figure 4
Changes in median scores from the 13 dimensions of the questionnaires. Dotted lines indicate a change in phase in the Future Patient Telerehabilitation program.

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