The emotional and physical impact of chronic hand eczema

In partnership with Allergy UK and a multi-disciplinary panel of healthcare professionals, LEO Pharma developed and funded a taskforce to explore the impact that Chronic Hand Eczema (CHE) has on people’s lives. The study design involved in-depth interviews (n=5) and an online survey (N=152), which looked to explore issues across five areas: physical experience, psychosocial impact, quality of life and relationships, work and patient healthcare experience.4

Results

The results of the survey found that the majority of respondents reported physical symptoms of CHE, such as itchy skin (96%), dry or chapped skin (91%) and cracking skin (88%), with frequency of symptoms, including thickening of the skin and hyperpigmentation, indicating more severe chronic disease.4 It is important to note that 94% admitted that having eczema on the hands ‘is harder than the rest of the body because they need to constantly use their hands’.4 Respondents described their hand eczema as unbearable, impossible to satisfy and all they can think about, with an average impact score of 7.2 out of 10 for itch and 6.2 for pain/burning.4 It is well documented that CHE can have a significant impact on an individual’s quality of life.1,4,5

Triggers

We use our hands every day for the essential daily activities of living, such as washing, dressing, preparing food and cleaning. For those with an impaired skin barrier function, such as hand eczema, this can expose the hands to many different irritants and allergens.6 ‘The most frequently reported impact was the ability for people to do their housework (73%)’ with respondents stating that their common triggers included cleaning products, sweating, hot weather, cold weather, stress, grass, animal fur, dust and cooking activities such as touching ingredients like onions, peppers, and citrus fruits.4

Hands are also very visible

The social stigma of having a visible skin condition has been well documented to impact on mental health and wellbeing.4,5 Respondents used words such as feeling embarrassed, self-conscious and anxious to describe how they feel about having such a visible condition.4 87% reported that having eczema on their hands is harder to deal with because they feel they cannot hide it from others and 71% admitted that they have tried to hide or conceal their hand eczema.4

It’s anxiety inducing to have my hand eczema visible as most don’t ask me what it is, they assume I’m unclean or unmoisturised. Extract of quote from The Chronic Hand Eczema Patient Impact Report in-depth interview

Psychosocial impact

Nearly three-quarters (72%) of respondents reported that their CHE affected their work or education.4 This impact includes the need to take time off, a decrease in productivity and focus and limitations on career progression and opportunities.4

CHE was also reported to have a huge impact on an individual’s social life, with 76% of respondents rating the impact of CHE on their Quality of Life (QoL) as high or moderate and 89% sharing that their CHE has some impact on their QoL most months.4 76% of respondents agreed that they avoid doing certain hobbies, while 14% stated they avoided going to social events.4 Nearly three quarters (73%), reported that CHE has some impact on relationships, with (49%) feeling undesirable and unattractive at times due to their CHE.4

The most commonly reported emotional impacts due to CHE were feelings of anxiety/stress (60%), frustration (59%), embarrassment or feeling ashamed (58%), and anger (55%).4 Worryingly 41% of respondents reported having low mood or depression, with around 6% reported to having thoughts of self-harm and 5% having thoughts of suicide.4 Yet, despite these alarming findings, the survey found that only 14% reported having been asked about the emotional impact by any healthcare professional.4 This is despite research finding that CHE is known to have a significant impact on all aspects of an individual’s QoL, including mental health and wellbeing, social life, hobbies, relationships, work and school.1,2

When asked about access to healthcare, the report statedthat ‘people experience CHE for a median of eight years prior to seeing a HCP for the first time, with the most common reason for this delay was that they didn’t think it was severe enough’.4 When asked what prompted them to finally seek help, 41% shared that they only sought help when they felt unable to manage their symptoms by themselves anymore.4

I don’t think the NHS cares about eczema at all. Well, I don’t think they understand the depth of stress it can put on people and the impact it has on their lives. Extract of quote from The Chronic Hand Eczema Patient
Impact Report in-depth interview

The survey also found that all respondents meet the diagnostic criteria for CHE, but only 4% stated they had been given a formal diagnosis by a healthcare professional.4 The majority of respondents (80%) had been diagnosed with atopic eczema and managed within the primary care setting, with nearly half of all respondants (47%) seeking help a few times a year.4

These stark findings serve to highlight the profound physical and emotional impact CHE has on individuals in the UK and emphasises the need for greater awareness and support for those affected by this condition.

When asked what activities, services or support they would like to see provided in relation to hand eczema, 66% of survey respondents said there needs to be more education for HCPs regarding hand eczema’.4 Education should include awareness of the different etiological and clinical sub types, differential diagnosis and management options, triggers and irritants, including diagnostic testing and cognisant of the psychosocial impact.2

HCP support for patients could include the following measures:

• Be aware of guidelines and tools to support the management of hand eczema: This could include hand eczema severity index.2,5
• Check for underlying causes for exacerbations: Fungal/bacterial infections, allergen and irritant triggers, including occupational risks are all underlying causes to explore.6,8,9,10 Also consider the impact of psychosocial factors, including stress, anxiety and other lifestyle factors that may affect eczema control.5
• See beyond the physical symptoms and take a holistic approach to care: Ask about the impact that hand eczema has on daily and social activities and mental health.
• Educate and empower hand eczema sufferers and support self-management: Help them understand their condition and management options, know their triggers, how to use medication correctly and how to identify when their eczema is worsening and when to ask for help.
• Refer patients with ‘difficult or severe eczema’, who are not responding to usual management options to a specialist dermatology clinic for assessment.

Conclusion

The feedback generated from this survey is extremely compelling and serves only to further compound what individuals with CHE have been trying to tell us for years; that hand eczema has a huge impact on a person’s ability to carry out simple everyday tasks, affecting all areas of their lives including their social, emotional and psychological wellbeing. For many people, living with CHE is not being addressed by their healthcare provider. This report demonstrates that there is a need to review how patients with CHE are treated and managed to ensure they receive optimum care for their condition.

The full report is available here. By clicking the link you will be taken to the LEO Pharma UK website.

References

1. Quaade A, et al, Prevalence, incidence, and severity of hand eczema in the general population – A systematic review and me-ta-analysis. Contact Dermatitis. 2021;84:361–374.

2. Thyssen, J, P , Marie L. A. Schuttelaar, M,L, A, et al, Guidelines for diagnosis, prevention, and treatment of hand eczema. Contact Dermatitis. 2022;1–22

3. Christoffers WA, Coenraads PJ, Svensson Å, et al. Interventions for hand eczema. Cochrane Database of Systematic Reviews. 2019;4(4):CD004055.

4. LEO Pharma. DOF DERM-001 June 2024.

5. Zalewski,A. Psychosocial Consequences of Hand Eczema—A Prospective Cross-Sectional Study. Journal of clinical medicine. 2023 Sep; 12(17): 5741

6. Lee GR, Maarouf M, Hendricks AK, Lee DE, Shi VY. Current and emerging therapies for hand eczema. Dermatologic therapy. 2019 May;32(3):e12840.

7. Janstrup AK, Nørreslet LB, Toft-Hansen JM, Ofenloch R, Agner T, Yüksel YT. Assessment of hand eczema severity by patients using the hand eczema severity index (HECSI). Journal of the European Academy of Dermatology and Venereology. 2023;37(11):2349-2354.10.

8. Haslund P, Bangsgaard N, Jarløv JO, Skov L, Skov R, Agner T. Staphylococcus aureus and hand eczema severity. The British journal of dermatology. 2009;161(4):772-777.

9. Mernelius S, Carlsson E, Henricson J, et al. Staphylococcus aureus colonization related to severity of hand eczema. Europe- an journal of clinical microbiology & infectious diseases : official publication of the European Society of Clinical Microbiology. 2016;35(8):1355-1361.

10. Madsen DE, et al. EADV 2021 [P0199].