Improving the diagnosis and care pathways for hidradenitis suppurativa in primary care (ID-HS)

BACKGROUND HS is a chronic inflammatory condition presenting with painful nodules, abscesses, and tunnelling in the flexural sites. Disease flares are common, and the disease burden is high, significantly affecting the patient and their family's quality of life. Prevalence is estimated at 1%, but this is likely a conservative estimate given a known average delay in diagnosis of 7-10 years. Patients see, on average, five HCPs and their GP over eight times in the 12 months before the diagnosis of HS is made. Delays recognising the condition result in most patients having moderate or severe disease at diagnosis, which reduces treatment effectiveness and leads to irreversible scarring. Spontaneous remissions of HS are uncommon. Initial treatment can be commenced in primary care. HS is associated with multiple comorbidities, including cardiovascular disease and depression. Patients have a 50% risk of developing any cancer and a high risk of cardiovascular death and suicide. The longer the delay to diagnosis, the higher the burden of these comorbidities. HS has an annual cost to the NHS of £4900 per person and an impact on the UK economy of £3.83 billion. AIM To improve the diagnosis and initial management of patients with HS in primary care OBJECTIVES Identify what is already known about HS diagnosis in primary care Identify the barriers and facilitators to diagnosing HS in primary care in the UK Develop an adjunct to clinical decision-making and validate it using primary care electronic medical records (EMRs) METHODS WS1: A systematic review of the scientific literature on HS diagnosis in primary care This will provide the foundation for the rest of the project. WS2: The identification of barriers and facilitators to a diagnosis of HS A survey of 600 patients and 300 HCPs will be followed by in-depth interviews using a topic guide developed from the survey responses and the systematic review in WS1. WS3: Development and validation of an adjunct to clinical decision-making for HS A retrospective cohort study will use the Clinical Practice Research Database (CPRD). I will identify factors associated with an HS diagnosis to build a diagnostic model so this can be used to proactively identify patients with HS who haven't been given a diagnosis yet. PATIENT AND PUBLIC INVOLVEMENT (PPI) Patients have helped guide me on the focus of my project, and they will co-develop all patient-facing material. I will be supported throughout the fellowship by six monthly meetings with my PPI group and a separate advisory group comprising patient advocates, GPs, nurses, and a GP manager. ANTICIPATED IMPACT WS1 and 2 will identify the existing scientific literature and the barriers and facilitators to diagnosing HS. These will inform guidelines on diagnosing HS in primary care and be used to develop an adjunct to clinical decision-making. If useful, the adjunct to diagnosis could be rolled out in primary care to help identify HS patients and start appropriate treatment. Future work as part of an advanced fellowship will include health economic evaluation, feasibility studies and national implementation into primary care systems.