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A skin condition called hidradenitis suppurativa (HS) can have a devastating impact on people’s psychological, social, and physical well-being. In new research, people with HS describe how they struggle with relationships and work. The researchers make recommendations for improving management of the condition.

HS is painful and may get worse over time. More needs to be known about the condition and more treatment options are needed. Diagnosis is often not made until several years after the first symptoms appear.

The research team pooled studies detailing the experiences of patients. They found that people with HS missed out on life events due to pain and social isolation. They experienced stigma, were embarrassed by their condition, tried to hide it, and were afraid of others finding out. People felt unheard and misunderstood by healthcare professionals.

Earlier diagnosis is essential, the researchers say. Educational materials for healthcare professionals may help them to better manage the condition. Healthcare professionals need to handle sensitive topics tactfully.

A multidisciplinary approach is needed to manage the different (physical, emotional, and social) aspects of the condition, they conclude. Social support networks could help people to cope.

Further information on hidradenitis suppurativa is available on the NHS website.

What’s the issue?

HS is a long-term painful condition. It causes boils, abscesses (painful collections of pus) and scarring, usually in the armpits, groin and bottom; and also around the breasts in women. It affects about 1% of the UK population and usually starts around puberty.

People with HS usually need to manage their own condition, for instance with bandages and pain relief. Giving up smoking, managing weight and other changes to their health behaviours can help. They might be prescribed creams and oral or injectable medication. Some people are offered surgery.

Many people wait years for a diagnosis of HS. People wait an average of 7 years after their symptoms first appear. This is much longer than for other skin conditions. For example, people with psoriasis (red, flaky patches of skin) wait an average of 18 months. Delayed diagnosis can lead to more severe disease, more surgery, and more days off work.

HS impacts physical, social, and psychological well-being. HS often leaves irreversible scars. People with HS tend to have poor quality of life. They have a higher risk of suicide than people without the condition.

Clinical improvements and increased awareness would improve the quality of life for people with HS. This review brings together research about HS. It describes the experiences of people with the condition and makes recommendations for managing the condition.

What’s new?

The researchers used a systematic process to gather 14 studies on HS. A person with the condition helped to interpret the findings. Together, the team identified 3 common themes.

1. Putting the brakes on life

People with HS missed out on life events. The condition could limit their social and professional opportunities so severely that it could change the course of their lives. People described pain as relentless, extreme, and sometimes unbearable. The discharge from boils could have a bad smell. The condition led people to avoid situations, which had an impact on career choices and relationships.

Comments included: I just didn’t want anyone to see me, so I just isolated myself rather than having to explain.’ And: I don’t really go out as much because I am typically in pain and it’s painful to sit and I’m not really interested in socialising with friends and family as much.’

2. The stigma

Many people tried to conceal their HS, and they feared their condition being known. They worked hard to hide active symptoms (such as a leaking abscess), and they worried about odours. Younger people found the condition especially challenging.

Hiding the condition could make it more difficult to accept in the long term. But social support and psychological acceptance helped people with HS to cope. Connecting with others who have HS helped preserve a positive self-identity.

Comments included:I told my friend… and he was so cool about it. He’s like, “hey that’s ok. That’s something that you took your time to tell us, that’s fine.” Someone else with HS said: Having that support there, that’s what really helped me through it… And because I could talk to them about it as well because they knew what was going on because… they’ve seen the sores; they knew I was in an awful lot of pain.’

3. Falling through the cracks

People reported a lack of access to care. They felt unheard or misunderstood by healthcare professionals. Diagnoses were often missed or delayed.

A lack of personal control over HS and low self-worth was reported by many. Communication with healthcare professionals was often challenging, and interactions could increase feelings of shame. People found the long-term nature of HS difficult to come to terms with. Healthcare professionals often advised them to lose weight or stop smoking, without understanding the challenges people with HS face.

Comments included: I used to bawl my eyes out… You know, you’d come back after going to the doctors and you cry because they just don’t realise.’ Another comment was: I suppose the chronic aspect of it was a bit of a shock to me because I thought that this is a boil, this is an abscess… you know, I’ll have it treated it will be gone. And then you learn, no this will go on for decades.’ 

Why is this important?

This pooling of studies highlights the feelings of people with HS and gives insight into their daily struggles. It also reveals the lack of research into HS.

The researchers hope their work will raise awareness of the condition and the issues faced by patients. They hope it will encourage people with HS to seek diagnosis earlier and to look for support from fellow sufferers. It could increase understanding of the difficulties of living with HS among healthcare professionals and members of the public.

What’s next?

Based on this review, the researchers have made 4 recommendations.

    • Early diagnosis would improve people’s quality of life. Educational materials should be designed to help healthcare professionals diagnose and understand the condition.
    • A multi-disciplinary team approach would improve management of the physical, social and psychological consequences of HS. Psychological and social interventions should be prescribed alongside pharmacological and surgical treatments.
    • Access to social support networks would help people with HS deal with the stigma of the condition and adjust to living with it. Healthcare professionals could direct patients to local and national groups.
    • Better communication between people with HS and healthcare professionals is needed. Discussions about the emotional impact of the condition need to be managed sensitively. As do behavioural changes such as giving up smoking and losing weight. Educating healthcare professionals about HS and its impact on quality of life could help.

The researchers highlighted further avenues for research into HS. Most of the people included in the studies were White and had severe disease. The researchers would like to explore the experiences of people from other ethnic groups. None of the studies included anyone under 18 years old. HS typically starts around puberty, so people younger than 18 also need to be heard.

The team found no studies that explored the experiences of managing other conditions in patients with HS. This is surprising since HS is linked with many other conditions (including inflammatory bowel disease, cardiovascular disease and depression, among others).

Future research should address the development, evaluation and implementation of interventions, the researchers say.

You may be interested to read

The paper this NIHR Alert is based on: Howells L, and others. Thematic synthesis of the experiences of people with hidradenitis suppurativa: a systematic review. British Journal of Dermatology 2021;185:921-934

The Hidradenitis Suppurativa Trust: a charity dedicated to raising awareness, understanding and support for HS.

A patient information leaflet from the British Association of Dermatologists.

Changing Faces: a charity dedicated to supporting people who have a visible difference or disfigurement.

The Treatment of Hidradenitis Suppurativa Evaluation Study (THESEUS) study website, from the University of Nottingham.

 

Funding: This project was funded by the NIHR Health Technology Assessment programme.

Conflicts of Interest: Several researchers have received fees and funding from pharmaceutical companies, unrelated to this study.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.


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Commentaries

Study author

The James Lind Alliance has identified priority areas of research for HS. When I started working in HS research, I was surprised by how little attention HS has received historically, given the need. But it is heartening to see how much new research is being conducted in recent years. There were no UK studies on HS in our search. It’s an area that has only just been given the attention it deserves by the research community.Healthcare professionals who are used to seeing people with HS will not be surprised by what we found. But diagnosis in primary care remains a problem. We don’t fully understand why diagnosis is so delayed; we are hoping to research this further.There is so much work that needs to be done to help people with HS, but it all starts with raising awareness.Laura Howells, Health Psychologist and Research Fellow, Centre of Evidence Based Dermatology, School of Medicine, University of Nottingham 

Changing Faces

Recognition of the need for psychological support for patients who have chronic conditions affecting the appearance, such as HS, is much welcomed. Too often the impact of a skin condition on an individual’s mental health and wellbeing is overlooked as management of physical symptoms takes precedence. Regardless of where on the body scarring or lesions occur, we know that people can feel stigma and shame, resulting in low self-esteem and a loss of confidence.GPs and specialists, including dermatologists, should be supported to be better able to signpost patients to appropriate organisations that provide supplementary services to those offered by the NHS, including charities that can provide appearance-related counselling and wellbeing support. This is particularly important for young people diagnosed with HS, who would benefit from peer support, and access to practitioners who can help individuals develop coping strategies. Working together we can improve the lives of people with conditions like HS.Heather Blake, Chief Executive, Changing Faces 

Lived experience of a skin condition 

I live with a chronic skin condition myself and understand the need for greater awareness of how it can impact someone's daily living and their quality of life. This evidence makes the case for changes in how serious and often disabling skin conditions are diagnosed, treated and supported by the healthcare system. Changes could have a positive impact on those living with the condition.This paper highlights the physical, psychological and social challenges of living with the condition. This understanding could inform improvements in care and support services within the healthcare system and also within patient organisations and charities. It could also help to improve general awareness of the impact of living with HS. This might help the friends, family and carers of people living with the condition to understand the importance of acceptance and support.The information is important to GPs who have HS patients on their books. It will help GPs ensure that local services and support are in place for these patients, and emphasise the importance of early recognition of symptoms for early diagnosis.Trishna Bharadia, Public Contributor, Buckinghamshire 

Clinician  

I work in a tertiary HS service in England and this paper is highly relevant to me. HS requires more investment, more resources and more research to address these findings. The paper found that doctors frequently don't understand the implications of the things they ask from patients. That needs to be fully addressed.I hope that the powerful language of patients in this paper will have a strong impact on commissioners.Emma McMullen, Consultant Dermatologist and Clinical Director for Dermatology, Northern Care Alliance, Salford 

Member of the public 

I am an advocate for involving patients and the public in research. I am keen that we address as many hidden and debilitating conditions as possible. I hope that this paper will raise awareness and prompt early intervention for this traumatic condition, particularly among GPs and commissioners.My son suffers with acute acne still at the age of 28. He cannot tolerate the extreme drugs that might stop this hideous affliction. He has boils erupting frequently on his scalp leading to hair loss in those areas. We have spent a small fortune on cosmetic, herbal and medical interventions. Nothing works. The impact on his mental health, confidence and general wellbeing is frankly horrendous.This condition is similar to acne in the distress it causes, and the impact on quality of life. The James Lind Alliance is looking into this disease, which demonstrates the need to prioritise it and respond urgently.Colleen, Public Contributor, East Midlands
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