Exploring the care pathway to diagnosis for autoimmune blistering diseases

Background

Autoimmune blistering diseases cause painful blisters and open sores over the body and/or in the mouth. The symptoms are usually treated with medication which can have serious side-effects like diabetes and osteoporosis. Autoimmune blistering diseases can be fatal.

General Practitioners (GPs) are usually the first healthcare professionals people with an autoimmune blistering disease come into contact with. Once a GP suspects such a condition, the patient is referred to a dermatologist to make a diagnosis with some tests. As these conditions are rare, and the early stages can look like other skin diseases or other types of oral ulcers, there is potential for misdiagnosis and a delay in referral to a dermatologist. Some studies have shown a delay in diagnosis can be over 2 years. A survey amongst people with autoimmune blistering diseases has reported that half of them are unsatisfied with the diagnostic process mainly due to misdiagnosis. One of our patient co-applicants with bullous pemphigoid, the most common autoimmune blistering disease in the UK, writes, “…late diagnosis may have meant hospital stay, much distress and lengthy recovery. All costing the NHS…”.

To date, to our knowledge, there have been no studies with GPs to explore their views on the care pathway to diagnosis and what could help recognition and referral of autoimmune blistering diseases.

Aim

To explore the views of GPs with regards to recognition and referral of patients with autoimmune blistering diseases in primary care.

Methods

We will interview 15 GPs from different parts of England on a one-to-one basis to explore their views on reasons and barriers associated with recognition and referral of patients with autoimmune blistering diseases. We will aim to recruit GPs from diverse practices (e.g. with respect to patient list size, urban/rural, teaching practices). Interviews will be online.

Anticipated impact

A greater awareness of the care pathway to diagnosis for autoimmune blistering diseases. The findings from this study will also contribute to a larger piece of research, involving patients and dermatologists, to help identify these conditions earlier. Earlier diagnosis is important as it may mean disease control is possible with less aggressive treatment and improved wellbeing, for example by reducing discomfort from blisters.

PPI involvement

Patients with autoimmune blistering diseases, have inspired, and helped develop this study. They will ensure results are presented in a format that is easy for patients to understand and will publicise the results to the patient community. We are supported by the only UK-based patient support group for blistering disease: ‘PEM Friends’ (www.pemfriendsuk.co.uk).

Dissemination

We will publish our work and specifically target the Royal College of General Practitioners, British Association of Dermatologists, local media, and PEM Friends to share details with healthcare professionals and patients.

Amount awarded: £29,617