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Improving care and quality of life for patients with inflammatory skin conditions

HS skin condition armpit

Our research improves clinical care and quality of life for people with the inflammatory skin condition Hidradenitis Suppurativa (HS).

HS is a very painful inflammatory skin disease associated with abscesses and boils affecting skin creases (including the armpits, breasts and groin).

Despite the detrimental impact of these skin lesions on patient health and wellbeing, there has been little research on the disease. Our School of Medicine research team, led by Dr John Ingram, looked to change that.

Understanding the prevalence of HS

Our research used data from around 15 million patient records in the UK. An algorithm was created to identify patients who had not yet been diagnosed with HS or may have been diagnosed incorrectly.

The researchers found that HS prevalence in the UK was higher than originally thought, affecting 1% of adults as opposed to previous estimates of 0.1%. Today that would be nearly 700,000 people.

The study also found that HS was associated with depression, and that patients had a higher likelihood of cardiovascular risk factors such as hyperlipidaemia and type 2 diabetes.

This important study revealed the true extent of HS occurrence in the UK, as well as substantial other health risks to patients associated with the disease.

Hidradenitis suppurativa (HS) skin condition
Hidradenitis suppurativa (HS) is a condition that causes small, painful lumps to form under the skin. © Cardiff & Vale University Health Board

It was important to demonstrate that hidradenitis suppurativa (HS) is a common condition in the UK, affecting 1% of the population, and our research helped to define research gaps, improve the availability of drug treatment, and promote screening for associated health conditions.
Dr John Ingram Clinical Reader

Re-framing research priorities and standardising outcome measures

In 2013, Dr Ingram chaired a HS Priority Setting Partnership with the aim of establishing a new research agenda focused on identifying effective HS treatments. The group was a collaboration between the HS Trust patient support group and dermatologists with significant HS experience.

Key knowledge gaps in HS research were identified, including benefits associated with biological drug therapies and surgical intervention.

A second systematic review was undertaken by the Cardiff University team. This identified considerable differences in the methods being used to assess HS clinically, with variation in outcome measures (with effectively 30 different measures identified across 12 randomised trials in the review).

Due to the large variation in outcome measures the research team were unable to carry out a clear comparison between clinical trials. This limits evidence-based decisions on the best treatment that would improve patient care.

Dr Ingram therefore co-founded the HS Core Outcomes Set International Collaboration (HISTORIC). HISTORIC involves patients and healthcare professionals from 19 countries across 4 continents.

The group sought to overcome the discrepancy of outcome measures identified by the earlier research, focusing on identifying new outcome measures which could form the basis of future research programmes and HS trials.

Consensus decision-making identified six core outcome domains to measure in all future HS clinical trials: pain, physical signs, HS specific quality of life, global assessment, disease progression and symptoms.

HS Drug Treatment

Identifying effective treatments for the disease

In 2015, Dr Ingram led a systematic review on interventions for HS patients.

The review found that the drug adalimumab (an anti-tumour necrosis factor alpha monoclonal antibody therapy) was an effective treatment for HS, with patients reporting reductions in pain and improvements in their quality of life.

The review recommended adalimumab for treatment of HS in moderate to severe cases.


The approval for use of adalimumab in treatment of HS

  • In 2016, National Institute for Health and Care Evidence (NICE) approved the use of adalimumab as the first biological drug intervention for HS in the UK.
  • Prior to approval, doctors were required to submit a funding request for each patient they wished to treat with adalimumab. This was a complex process with low rates of take-up, resulting in few patients benefiting from the treatment.
  • Our research led to a 3-fold increase in prescribing of adalimumab for HS patients.

Recognition of HS as a prevalent and serious condition by UK Department of Work and Pensions

  • HS was formally recognised as a disability, enabling those affected by HS to apply for Personal Independence Payments and other benefits based on their diagnosis.
  • The DWP produced a training module which cited Dr Ingram’s research to guide occupational physicians in their assessment of HS patients.

Influencing guidelines and patient information

  • Dr Ingram's research contributed to a core recommendation in the guidelines for HS patients to undergo screening for cardiovascular risk factors such as hyperlipidaemia and type 2 diabetes.
  • Our research informed guidelines for patients with moderate to severe HS who were found to be unresponsive to standard therapy. Adalimumab was recommended as the frontline biologic drug therapy for this patient group.
  • Research influenced the amendment of patient information leaflets. The patient information included adalimumab as a treatment option, and includes mental health and other self-care advice.

Driving clinical change

  • Baseline and follow-up surveys of dermatological practice found that dermatologists had positively amended their practice.
  • 83% of dermatologists were now prescribing adalimumab compared to only 27% in 2014 (for moderate to severe HS cases).
  • Use of the vitamin A derivative isotretinoin (which the British Association of Dermatologist guidelines recommend to avoid for HS without associated acne) fell by nearly a half from 62% to 35%.

Setting a new research agenda and evaluating new treatments for HS

  • Our research was instrumental in influencing allocation of public funds to HS research for the first time in the UK.
  • New funding was made available by the commissioning of a Health Technology Assessment funding call, by the National Institute of Health Research.
  • Funding supports research and innovations of direct benefit to patients, clinical practice, and policy makers, which must be immediately effective within the NHS care pathway.

In summary

Our research resulted in:

  • Approval for adalimumab as a critical, and highly effective treatment for HS.
  • Guidelines that altered clinical practice, evidenced by clear changes in dermatological treatment.
  • Improved patient quality of life; access to disability payments through the UK DWP and monitoring for associated health conditions.
  • Establishment of new funding for health innovations for HS.