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. Coronavirus disease (COVID-19) is an infectious disease caused by a virus [severe respiratory syndrome coronavirus 2 (SARS-COV-2)], the virus responsible for COVID-19.

This survey is open to all patients and caregivers aged 18 years or older. To participate in this study, you will need to complete a short survey based on your own experiences. This survey should take around 20-30 minutes to complete.

The rationale of the proposed study is to provide insight into how the coronavirus pandemic is affecting caregivers and patients with certain medical conditions, namely cancer, precancerous conditions and rare diseases. By completing this survey you will help to identify the impact that the pandemic has had on patients and their carers. It is anticipated that the findings will be presented at charity events/meetings, scientific conferences; in a paper published in a peer-reviewed medical/scientific journal; and internal student reports.

We are also interested in investigating how the coronavirus pandemic continues to affect caregivers and patients. We therefore ask that at the end of the survey that you agree to give your email address so that we can contact you on two more occasions at the end of September 2020 and in January 2021 with an initial and reminder e-mail. This will help us to identify if the impact of the coronavirus changes over time.  These surveys will be much shorter. 

Please note that once you click on ‘Next’, all responses are automatically recorded. You may withdraw from the study at any time by exiting the survey or if you provide your e-mail address for subsequent surveys by contacting the research team below requesting that your information is deleted. 

All initial survey responses are anonymous if you do not provide your e-mail address. It will not be possible to identify you from your IP (computer) address. If you provide your e-mail address your information will be kept strictly confidential and you will be given a unique code to use in the invitation email for future surveys making your data pseudo-anonymised. Direct quotes may be used in presentations/publications but you will not be identifiable from any published quotes.

The study was reviewed and approved by the Queen’s University of Belfast, MHLS Faculty Research Ethics Committee (MHLS 20_52). The information from the survey will be stored electronically on password-protected encrypted university computers from Queen’s University Belfast and University of Aberdeen and will only be accessible to the study team.  A privacy statement is available for your review http://www.qub.ac.uk/privacynotice/Research/ListofResearchPrivacyNotices/PrivacyNoticeforResearchParticipants.html.  Further details may be found by contacting the University's Information Compliance Unit: info.compliance@qub.ac.uk. If you have any concerns about any aspects of the study, you can contact Dr Charlene McShane, c.mcshane@qub.ac.uk. Should you remain unhappy and wish to make a formal complaint, you can contact the Research Governance Team at Queen's University Belfast (Telephone: 028 9097 2529; E-mail: researchgovernance@qub.ac.uk).

Chair in Health Data Science, University of Aberdeen & Senior Lecturer, Queen’s University Belfast

E-mail: lesley.anderson@abdn.ac.uk or l.anderson@qub.ac.uk

OR

Lecturer, Queen’s University Belfast

E-mail: c.mcshane@qub.ac.uk