The HeartHive COVID-19 Study
Research type
Research Study
Full title
A longitudinal observational study of the experience of the COVID-19 pandemic in self-reported cardiomyopathy patients and people without heart disease in the Heart Hive
IRAS ID
284978
Contact name
Becky Ward
Contact email
Sponsor organisation
Imperial College, London
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
Research Summary:
All patients with heart disease should have the opportunity to participate in research into their condition, to advance knowledge and treatment.The HeartHive COVID-19 study is an international online pilot observational cohort study evaluating the impact and clinical outcomes of the COVID-19 pandemic on subjects enrolled in the HeartHive. Subjects with cardiomyopathy and people without heart disease who are HeartHive registry members are eligible to enrol.
Cardiomyopathies are progressive diseases, and there is a need to better understand what factors affect the chances of developing cardiomyopathy, and how the condition progresses.
The impact of the COVID-19 pandemic on patients with cardiomyopathy has not been explored and represents a critical unmet need. Insights into exposure, healthcare outcomes, behavioural changes and the psychosocial ramifications of the pandemic are required to better understand the health needs of this population during these unprecedented circumstances and to adapt clinical services to meet these.
The study will entail completing serial online surveys during the pandemic.
This study uses The Heart Hive - an international, online registry of patients with self-reported clinically diagnosed cardiomyopathy, and people without heart disease. Participants enrol and upload their own data through the website. It is the second research study that will be offered to registry participants and delivered through The Heart Hive platform.
This application is for the HeartHive COVID-19 study only, and does not include the Heart Hive platform (registry and database). Although this application does not include the Heart Hive platform, where necessary, relevant information about the platform is included in this form due to the integration of this study and the platform.Summary of Research:
The Heart Hive COVID-19 study has demonstrated that a third of surveyed patients with cardiomyopathy felt that their physical health deteriorated as a result of the pandemic when assessed shortly after the first wave of the pandemic. This was a significantly higher proportion than those that had reported a suspected COVID-19 infection.The study further illustrated that many patients had had outpatient clinic appointments rescheduled (29%) or cancelled (16%), and missed clinical investigations (38.9%), procedures (7.6%) or doses of medication (5.3%). Additionally, 40.4% of patients with cardiomyopathy felt that their health needs could not be met by telemedicine.
The findings also indicated that the psychological impact of the pandemic did not differ significantly between patients with cardiomyopathy and subjects without heart disease. Patients with cardiomyopathy did feel that they may be more susceptible to COVID-19 infection and suffer more severe illness if infected.
Approximately 1 in 5 patients with cardiomyopathy had received a recommendation to ‘shield’; a higher proportion of the patients that had received a recommendation to shield reported worsening of their cardiomyopathy symptoms.
We also conducted two other parallel research initiatives alongside the Heart Hive COVID-19 study, which are also published in our research paper. By studying participants of the Royal Brompton & Harefield Hospital Cardiovascular Research Centre Biobank, we found that patients with DCM and HCM were no more likely to be infected with COVID-19 than the rest of the UK population. However, of the patients with DCM and HCM that were studied, those that had been infected with COVID-19 had more frequently required treatment in hospital during the first wave of the pandemic.
Finally, we used NHS Digital Hospital Episodes Statistics to illustrate that there was a 17.9% year on year reduction in cardiomyopathy-related hospital admissions in 2020, with the lowest hospitalisation rate occurring during the first UK lockdown.
To the best of our knowledge, this is the first study to assess both the direct and indirect effects of the COVID-19 pandemic on patients with cardiomyopathy. We hope these findings can be used to adapt clinical services to meet patients’ health needs as the pandemic evolves.
REC name
London - Fulham Research Ethics Committee
REC reference
20/HRA/2744
Date of REC Opinion
8 Jul 2020
REC opinion
Further Information Favourable Opinion