Projects: PEM Friends survey
In 2022, PEM Friends developed and conducted an anonymised 15 minute on-line survey called “Living with PEM: triggers, challenges in medical resource provision and emotional impacts”. The survey was developed over 4 months by Devni Edirisinghe (a 5th Year medical student volunteer) and Andy Heath (a Pemphigus Vulgaris patient, member of PEM Friends and retired scientist).
The purpose of the survey was to address some of the issues based on queries and discussions that frequently come up in our private Facebook group and at our weekly Zoom gatherings. Issues such as: “where do we get our treatment”, “how long did it take to get a diagnosis”, “what do we think triggers PEM”, “how difficult is it to get diagnosis and treatment” and “how has PEM affected our lives”. The survey concentrated on PEM Friends as a group and therefore the results paint a picture of the group's PEM experience.
The response was excellent: 101 people participated. There were 35 questions, some in several parts. The outcome was a spreadsheet containing over 4,000 pieces of information. A few of the highlights from the analysis were:
Half of respondents reported they received their PEM diagnosis from a dermatologist, but substantial numbers were diagnosed by maxillofacial professionals or dentists
Two thirds said their PEM was initially misdiagnosed and named 35 different initial diagnoses
Only 3% had their PEM diagnosed by a GP
The approximate locations of respondents were plotted on a map. Unsurprisingly there was clustering around some of our bigger cities, the biggest cluster being around Greater London. The greatest surprise was that 92% of respondents lived in England. PEM Friends members who responded appear to be very rare in Northern Ireland, Wales, and Scotland
Most respondents (91%) said their PEM care was overseen by a hospital
Nearly 50 hospitals around the country were mentioned but by far the most prominent (23%) was Guys and St Thomas’ in London
Other prominent hospitals were Leicester Royal Infirmary, RVI Newcastle, Birmingham Dental Hospital and Oxford Churchill Hospital.
The graphical survey report can be accessed below: