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Hidradenitis suppurativa

HPP collaborated with patient representatives and clinicians to raise awareness of hidradenitis suppurativa and its wide-ranging effects on quality of life.

Family sat on the beach on a cloudy Winter day

Context

Hidradenitis suppurativa (HS) is a chronic and painful inflammatory skin condition characterised by recurring nodules and abscesses that can have a notable impact on the lives of people with the condition. Estimates indicate that HS affects around 1 in 100 people.

HS can significantly affect people’s lives. The pain can restrict participation in daily activities such as going to work or playing sports. Physical symptoms can lead to stained clothing and an unpleasant odour that may cause people to experience embarrassment and withdraw from social situations, making them feel isolated. As a consequence, many people with HS experience anxiety and depression.

Long delays in diagnosis, unsatisfactory treatment choices and variable access to multidisciplinary care often prevent people with HS from receiving the timely and high-quality care they need. And, crucially, awareness of HS remains low among healthcare professionals and the public. Addressing this is a crucial step towards improving the lives of people with HS and their families.

Project resources

Infographic

Infographic

What is HS and how does it affect the people who live with it?

What we’ve achieved

HPP has brought together an international, multidisciplinary steering committee comprising patient representatives and healthcare professionals with the aim of raising awareness of the burden of HS and the barriers faced by people with the condition along the entire patient pathway.

In June 2023, to mark HS Awareness Week, we published an infographic that provides an overview of the impact of HS and the key challenges associated with the condition.

This will be followed by the development of an international report, which will be published later in 2023. The report will be developed based on a comprehensive literature review and interviews with both people living with HS and healthcare professionals.

Key partners and stakeholders

This project was developed with the support of the following steering committee members:

  • Professor Falk Bechara, Centre for Hidradenitis Suppurativa/Acne Inversa, Germany
  • Silvia Lobo Benito, Spanish Hidradenitis Suppurativa Patient Association (ASENDHI), Spain
  • Marie-France Bru-Daprés, French Association for Research on Hidradenitis (AFRH), France
  • Angela Gibbons, patient representative, UK
  • Susanne De Goeij, Hidradenitis Patiënten Vereniging, Netherlands
  • Chevonne Lewis, Hidradenitis and Me, Canada
  • Professor Francesca Prignano, University of Florence, Italy
  • Annette Rosenberg, HS International Sweden, Sweden
  • Dr Elia Rosi, University of Florence, Italy
  • Bente Villumsen, Danish Hidradenitis Suppurativa Patients’ Association, Denmark

Project funding

This project is led by The Health Policy Partnership (HPP) with guidance from a multidisciplinary steering committee. HPP was commissioned by UCB, which initiated and is funding the project. UCB reviews all outputs, but editorial control lies with the steering committee. Contributing experts are not paid for their time.

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