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General Practitioners views and perceptions of rare disease across NI

Many GPs have reported feeling overwhelmed when caring for rare disease patients.  Their lack of knowledge forces them to turn to the internet but finding reliable information is often difficult.   We conducted a study in early 2019 to explore GPs perceptions and experiences of rare diseases within a GP population from Northern Ireland. 

 

An online survey was hosted within SmartSurvey, available for 6 weeks in early 2019, which queried GPs' career to date, interactions with rare disease patients, challenges faced, the exchange of information with patients, priorities for the future, support for such patients and finally training.   Sixty-six GPs participated in the survey.

 

Many frustrations were mentioned by GPs when caring for such patients including finding a diagnosis, lack of specialist services and lack of awareness.  Seventy-nine percent of GPs responding did not feel adequately trained to care for patients with a rare disease, while 93% were interested in undertaking training to enable them to improve their care for rare disease patients. 

 

GPs described many common frustrations among rare disease patients as illustrated below:

 

The figure below displays the top priorities that GPs suggested would help most in their interactions with patients and / or other HCPs about rare disease(s).

 

We are keen that this important research is as accessible as possible so are delighted that our paper is now publicly available on MedRxiv: Read the paper Perceptions and experiences of rare diseases among General Practitioners: an exploratory study | medRxiv.  This is an early version of the paper that has not yet been peer-reviewed.  The manuscript has been submitted for peer-review and for publication.

 

McMullan J, Crowe AL, McClenaghan T, McAneney H, McKnight AJ (2021) Perceptions and experiences of rare diseases among General Practitioners: an exploratory study. MedRxiv doi: https://doi.org/10.1101/2021.09.07.21263025

 

This work was supported by an award from the NI Public Health Agency and the Medical Research Council – Northern Ireland Executive support of the Northern Ireland Genomic Medicine Centre though Belfast Health and Social Care Trust.  AC is a recipient of a PhD studentship from the Department for the Economy NI. 

 

THANK YOU TO EVERYONE WHO CONTRIBUTED TO THIS IMPORTANT RESEARCH

 

 

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