The IMPaCCT of COVID-19 pandemic on those with a rare disease.

Ashleen Crowe*, Julie McMullan, Olinda Santin, Stephen Quinn, Charlene McShane, Lesley Anderson, Amy Jayne McKnight

*Corresponding author for this work

Research output: Contribution to conferencePoster


Rare diseases affect 1 in 17 people in the UK, which makes this an important consideration within public health. In the UK, each rare disease is classified as rare due to less than 1 in 2,000 people having the individual diagnosis. The impact of COVID-19 and of lockdown on people who have a rare disease has not been widely studied, so we evaluated the experiences of people with a rare disease with the aim of identifying strategies and measures to improve their quality of life in these strange and unprecedented times.

A survey was conducted to assess the health, healthcare, and psychosocial impact of COVID-19 on patients with rare diseases. This survey was designed by teams in Queens University Belfast and the University of Aberdeen. It was distributed through social media platforms and media outlets across the UK. Qualitative analysis of the open ended questions was conducted using thematic analysis.

There were 424 respondents, with 293 residing in United Kingdom, of those 57 were in Northern Ireland. There were 6 themes returned from open ended questions. These were: 1) Information, Communication, and Long Term Uncertainty; 2) Mental Impact of Lockdown; 3) Practical Support and Carer Responsibility; 4) Social Interaction; 5) Health Service, Healthcare Experience, Impact on Health and Wellbeing; 6) and Healthcare Professionals.

Those with a rare disease are in the unique position of often being experts in their own condition, having more day-to-day knowledge of it than their healthcare professionals. However in the current circumstance information is simply not available on how COVID-19 will affect them individually. They are also having crucial appointments being postponed, are no longer having their condition as regularly monitored, and in some cases are adjusting medications and make decisions without the support of a healthcare provider. Lockdown caused a decrease in support and increase in practical challenges. Their physical and mental health has in many cases deteriorated due to the impact of COVID-19 on many aspects of their lives. Improvements to how those with a rare disease are informed, supported, and provided health care are needed during this pandemic.

Health and Social Care services need to work with Public Health agencies to improve services for those with a rare disease by implementing measures to improve the quality of life and healthcare of those with a rare disease, while also keeping the general populous safe from COVID-19.
Original languageEnglish
Publication statusPublished - 17 Nov 2020
EventJoint Public Health Conference 2020: Picking up the Pieces - Public Health and COVID-19 -
Duration: 17 Nov 202017 Nov 2020


ConferenceJoint Public Health Conference 2020
Internet address


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