Irish research highlights that living with HS can have a significant impact on quality of life

HS Awareness Week

June 1st – 7th marks Hidradenitis Suppurativa (HS) Awareness Week globally, and is an opportunity to raise awareness of this inflammatory skin condition, estimated to affect at least 1% of the Irish population.


Irish research

A recent 2020 Irish paper in Dovepress, authors Mac Mahon et al. reported on a study of health-related quality of life and patient-reported outcomes in individuals with HS, in their clinic. As measuring tools, to assess health-related quality of life (overall effects HS had on their lives) and levels of anxiety and depression patients experience, Mac Mahon et al., used a DLQI and HADS.

DLQI – Dermatology Life Quality Index, measures in 10 questions the impact a skin disease has on the person’s life, physically, emotionally, socially and sexually in the past week as well as how troublesome the treatment has been.

HADS – Hospital Anxiety and Depression Scale, used by doctors to determine the levels of anxiety and depression that a person is experiencing. It comprises of 7 questions for anxiety and 7 questions for depression.

Study findings

Findings in their study, reported that patients with HS had considerably higher scores across all areas (treatment, personal relationships, work, daily activities, leisure activities) in their DLQI compared to patients with psoriasis. HS patients also scored considerably higher on the HADS, reporting higher scores in depression and anxiety, compared to psoriasis.

Another Irish paper published in the British Journal of Dermatology in 2020, authors Keary et al. reported on their study which aimed to assess, “the lived experience of psychological distress in HS”. They found that all participants in their study indicated pain as a challenging component of HS and the effects of pain caused distress, with some participants reporting that it imposed restrictions in their daily lives.

On a positive note, some participants in this study reported that they attended a support group or knew others with HS, which they found a helpful coping strategy.

What is HS?

HS is a chronic or long-term inflammatory skin disease of the hair follicles which causes the following: recurrent painful lesions: nodules, abscesses and sinuses (tunnels under the skin which discharge pus and fluid). HS more commonly occurs in the armpits, groin, perianal area, buttocks, and under the breasts.

What causes HS?

The exact cause remains unclear, however, this inflammatory skin condition is thought to be linked with certain irregularities in the skin’s immune system, problems with the structure of the hair follicle, and genetics.

What are the impacts on quality of life?

Living with HS is unique to that person whether their condition is mild, moderate or severe. This condition may prove challenging for some, depending on the location of the lesions and the nature of symptoms which may cause pain, discomfort, embarrassment, challenges in carrying out day-today activities, and can affect personal and work life. Due to the unpredictable nature of this recurrent condition and especially when it is active (flare-up), HS may have a profound and challenging effect on a person’s mental health and quality of life.

Support

For anyone with this condition, it’s important to know that you are not alone and HS is not uncommon. Finding a friend or family member that you can talk to can be beneficial. If you find it difficult, connecting with people who understand your condition and feelings may be comforting and useful

If you would like to get in touch with the private Facebook HS Support Group, where you can talk to other people with HS, contact Barry at hsireland@outlook.com or follow on Twitter @hsireland1  

Click for more information on HS, our HS Information booklet or if you have a question for our nurse click here.

References

Mac Mahon J., Kirthi S., Byrne N., O’Grady C. and Tobin A.M. An Update on Health-Related Quality of Life and Patient-Reported Outcomes in Hidradenitis Suppurativa. Dovepress Patient Related Outcome Measures 2020; 11:21-26

Keary E., Hevey D. and Tobin A.M. A qualitative analysis of psychological distress in hidradenitis suppurativa. British Journal of Dermatology 2020; 182:342-347

 


For more information about HS, visit our main HS page.  If you need help or guidance about managing your HS, ask our dermatology nurse.

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