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IMPaCCt Study - investigating the impact of COVID-19 on caregivers and patients

Caregivers and patients are describing a major impact of COVID-19 on their lives. Help us to identify the impact that this pandemic has had and continues to have on patients and their carers, with a focus on cancer and rare diseases.

IMPaCCT Study - Investigating the impact of COVID-19 on caregivers and patients

Researchers at Queen’s University Belfast and the University of Aberdeen, invite you to take part in an online research study investigating the impact of the COVID-19 (coronavirus) pandemic on caregivers and patients with cancer, pre-cancerous conditions and rare diseases.

COVID-19 (a coronavirus) is an infectious disease caused by a virus. COVID-19 was first identified in patients in Wuhan province in China at the end of 2019.  From there the virus has spread to other countries worldwide with the World Health Organisation declaring it a pandemic on 12th March 2020. This virus has had a major impact on many people with anecdotal reports suggesting patients and carers are often struggling to manage.  We are particularly interested in hearing views from people living or working with cancer, pre-cancerous conditions, and / or rare diseases.  


For people with a rare disease:  PLEASE have your experiences counted by completing this IMPaCCT survey  

Rare diseases are defined by the European Union as those individually affecting fewer than 1 in 2,000 individuals, cumulatively affecting 1 in every 17 persons at some point in their lives.   It is estimated that 350 million people globally have a rare disease with more than 8,000 rare diseases recorded in the literature.  We know that being diagnosed with a rare disease can lead to a significantly reduced lifespan and quality of life for patients and their families; accurate diagnosis and early intervention significantly improves long term outcomes for rare disease patients.  Many individuals with a rare disease will regularly attend more than 5 medical professionals; many of these consultations have been delayed as a result of health and social care measures implemented for coronavirus.  Access to clinical trials and medications has been severely curtailed in recent weeks.  Individuals living and working with rare diseases consistently describe challenges accessing accurate information about individual rare diseases and accessing appropriate services (read a summary of our 2020 report); anecdotally this has been exacerbated in recent weeks due to the coronavirus (COVID-19) pandemic. Individuals living with rare conditions often describe feeling ‘isolated’ and ‘dismissed’ so effective communication and provision of information is critical.

We are keen to hear your views on how COVID-19 is impacting your day-day life.


Caregivers of people with a rare disease: PLEASE have your experiences counted by completing this rare disease survey for caregivers  

Many patients with rare diseases require support from formal and informal caregivers. Recent research by our team has revealed that carers often do not prioritise themselves and consequently find themselves in difficult circumstances when others are depending on them for care needs (McMullen et al., unpublished).  We have developed a cross-sectional support leaflet for carers of people with a rare disease (available support leaflet here).  In the midst of this coronavirus (COVID-19) pandemic, carers have voiced a number of concerns to the research group including where to get specific support and information, financial concerns, psychosocial concerns, ensuring patients have sufficient care they need at this time, and having appropriate provision of personal protective equipment.

We are keen to hear your views on how COVID-19 is impacting your day-day life.

The study was reviewed and approved by the Queen’s University of Belfast, MHLS Faculty Research Ethics Committee (MHLS 20_52). 

Photo: AJ McKnight
AJ McKnight
Centre for Public Health, QUB
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For more information, please do get in touch with our rare disease team by email