Chronic hand eczema in Europe: Patient experiences and perspectives (CHEPEP) in qualitative interviews

Chronic hand eczema (CHE) is a very common skin disease among the European population. It causes itch and pain and, in more severe cases, seriously impairs hand functioning at work and in private life.


I N TRODUC TION
Hand eczema (HE) is a common inflammatory skin disease. 1 Patients suffer from itch, pain, dry or cracking skin, among other symptoms. 2 Chronic hand eczema (CHE) may impair their ability to work, daily activities, cause sleep disturbances or concerns about the hands' appearance. 2,3 In the context of patient-centred care, the patient's perspective has also become more prominent in dermatological research. [4][5][6][7] Qualitative methods are a suitable way of investigating this area because they allow to 'get under the skin' by exploring how patients make sense of and cope with their skin condition. 7 Apfelbacher and Nelson highlighted that a better understanding of patient perspectives through qualitative research is crucial. 4 In a recent systematic review, Rocholl et al. 5 investigated illness perceptions of adults with eczematous skin diseases, including three qualitative and four quantitative studies. They concluded that these perceptions were complex and connected to coping behaviour and illness outcomes. Thus, they should be considered in medical practice. 5 In another recent systematic review, Teasdale et al. 6 synthesized themes from 32 qualitative studies about patient experiences with the management of eczema, with nine studies investigating eczema in adults. Similarly to Rocholl et al., this review concluded that health professionals should address patient beliefs and concerns about treatments, which could enhance effective self-management. 6 Four individual studies focussed on perceptions of patients suffering from HE. [8][9][10][11] With the exception of Zack et al., 10 who investigated workplace training experiences, these studies concluded that patients lack sufficient knowledge about their skin condition and require individualized support from their healthcare providers. The four studies reported various patient wishes, coping strategies and attitudes. However, only two studies so far have focussed on CHE, conducting focus group discussions with patients recruited at a Danish university hospital 9 and a Dutch tertiary referral centre. 11 We set out to expand existing qualitative evidence on CHE, both occupational and nonoccupational, from a multicountry European perspective, which is a new approach in qualitative CHE research. We aimed to explore recurring problems, wishes and goals of patients with CHE by investigating how they experienced their CHE, prevention strategies and provision of healthcare. The Chronic hand eczema in Europe: Patient experiences and perspectives (CHEPEP) project also sought to uncover themes and qualitative associations that were not previously investigated.

M ET HODS
We interviewed adults with CHE from seven European centres, using a topic guide (Appendix S1). [12][13][14][15] Template analysis, a type of thematic analysis, was applied to analyse the interview transcripts. 16 This flexible approach allowed us to revise and refine tentative a priori codes from existing literature 9,17 inductively based on the contents of the interviews and is well suited for managing rather large sets of qualitative data. 16 Detailed methods are given in Figure 1.
There has been a methodological debate whether or not quantitative data (raw numbers, percentages, or terms like 'most' or 'some') should be reported in qualitative research. We followed the guidance provided by Neale et al., 18 which suggests that such reporting would be inadequate for CHEPEP. All reported themes and statements refer to at least three but usually not to all participants.

R E SU LTS
We included 60 participants with CHE (Table 1). Twenty-eight interviews were fully coded, reaching theoretical saturation for the five main themes and subthemes as depicted in Figure 2a-e. Figure S1a-e in Appendix S4 presents subthemes that were connected by patient statements (e.g. treatment satisfaction was connected with treatment results and with perceived support from treatment teams). All 60 interviews were coded regarding lower-level subthemes for patient needs, barriers towards prevention/therapy measures, and results from previous qualitative HE studies (Figures 3-5, Appendix S3). 8,9,11 Out of 12 completed respondent validation (RV) questionnaires, we needed to discard four, in which the statements were judged according to the patients' individual situations (not for patients with HE in general).
Supplementing the main results ( Figures 2-5, Appendix S4), we report the following details: First, linking their own experience with their assessment of treatment, patients noticed that topical cortisone was bad for the skin ('I get the feeling that the TCS is toxic.'). Second, participants reported discomfort with the HE's appearance. The way the hands looked or felt like (e.g. shaking hands, intimacy and sports) affected patients' social lives. In public, participants wondered what others thought about their hand eczema. Private relationships were affected differently because friends and family knew about the condition. Patients required assistance from household members in daily life. Conversely, other participants reported that their social relationships were unaffected or that their hands' appearance did not bother them.

DISCUS SION
We present five recurring themes reported by 60 people with lived experience of CHE: (1) Knowledge about the disease and its course, with participants stating that they did not feel well informed about CHE; (2) preventive behaviour, which was described as more or less effective but also cumbersome; (3) hand eczema therapy, for which participants were openminded despite mixed previous experiences; (4) impact on everyday life, revealing the physical and emotional burden of CHE; and (5) attitudes towards CHE and healthcare, which included the acceptance of the skin condition and learning coping strategies. Participants found it important to be taken seriously, to receive practical advice, try out additional treatments or examinations, find new hope and have occupational perspectives.
The final CHEPEP themes and subthemes differ considerably from the tentative a priori codes identified by the CHE study of Mollerup et al. 9 Such changes are in line with the template analysis method. 16 The template was modified because several a priori subthemes were not present in our interviews; others seemed to belong to different main themes or the way they were phrased did not fully fit what our participants said. For barriers towards therapy and prevention, the a priori codes from the Theoretical Domains Framework 17 were suitable, although only seven out of 14 domains occurred in CHEPEP.

Knowledge
Our study participants confirmed the a priori code 'lack of knowledge'. 9 In line with previous findings, they felt insufficiently informed about eczema, 6 were uncertain about its F I G U R E 1 Qualitative research methods applied in CHEPEP. cause 5,10,19 and wondered about aggravating factors. 9 However, not all participants of our RV believed that there was a lack of knowledge among patients with CHE. In line with Mollerup et al., 9 we found that patients had knowledge about deteriorating factors, skin protection and skin care. Participants indicated that they overcame knowledge gaps with experience or the assistance of specialists. Conversely, at least one participant of the RV had doubts in such a learning progress.

Preventive behaviour-balancing the effort
As previously reported, patients applied preventive measures such as protection gloves, cotton gloves, emollients and avoiding contact with allergens or water. 5,9 CHEPEP confirmed that such measures were a constant concern. 9 They may be limited by barriers and problematic experiences, 5,8-10 such as impaired work routines, exacerbations or negative social consequences. 8 Prevention was perceived as time-consuming and energy-draining 6,9 ; emollients were too greasy 5,6,9 ; avoiding aggravating factors at work completely was reported to be impossible. 9 In addition, CHEPEP participants did not always find these measures effective. However, we confirmed that prevention could be pivotal to keep up eczema control. 5 Some barriers that were reported earlier, 8,9 such as frustration, limits of time or foresight, or disbelief in the usefulness of emollients, were not confirmed by CHEPEP, since they were expressed by fewer than three participants (Appendix S3). However, this might be attributed to our topic guide, which did not directly address barriers towards prevention. Finally, there was disagreement in the RV whether prevention strategies were annoying, restricting and constantly unpleasant. The a priori code 'preventive behaviour -balancing the effort' appropriately summed up the theme's ambiguity.
To address barriers in practice, it has been recommended (along with further suggestions 5,6,8,9,11,20 ) that treatment teams acknowledge the difference between theory and practice 11 and assist patients in developing new habits (as 'shortcuts to the brain') in accordance with patient preferences. 9 Recommendations are required on how to address the specific barriers that patients have identified ( Figure 3).

Therapy
As previously reported, our participants were concerned about the safety of treatments, 6 in particular corticosteroids, 6,11 and relapses after treatment. 6,11 However, they were open to treatment recommendations. Barriers towards certain therapies were rather self-evident: adverse effects, poor effectiveness, time requirements or limited availability.

Impact
Our findings are in line with previous reports that eczema could have negative impacts on work 2,5,6,9,10,20 and vice versa. 2,5,[8][9][10] Like previously interviewed patients with occupational skin disease, 8 our participants might be forced to face retraining or unemployment and could therefore be worried about their occupational future. We confirmed that CHE impaired emotional well-being 2,5,6,8-10,20 and daily activities. 5,6,9,11 In contrast to Danish CHE patients, 9 CHEPEP participants did not describe themselves as indolent due to these restrictions. Finances 2,5,10 and social relationships 2,5,8 were also affected. The latter, in line with Bathe et al., 8 included comments on the skin condition, fear of suspected contagiousness or reduced physical affection in intimate relationships. Concerning the hands' aesthetic appearance, patients felt embarrassed or stigmatized, as previously reported, 2,5,6,8-10 whereas others felt unaffected. Among CHEPEP participants, almost every impact of CHE on patients' lives evoked an emotional response, which was in part previously reported, for example for patients who felt guilty about sick leave or worried about job loss due to CHE. 5,8,10 Complementing these results, we found that working with CHE was also an emotional burden for our participants.

Attitudes towards CHE and provision of healthcare
Our study participants confirmed the previously reported wish for finding a cure for eczema. 6 Similarly to participants in Mollerup et al., 9 who expressed a desire to be 'like everyone else' , our participants compared themselves to persons without CHE, although this was not fully confirmed in our RV. The RV also yielded mixed reactions to the statement that patients accepted their CHE over time (Figure 2e). Patients may require help in developing realistic expectations, 9 such as positively framed 'control not cure' messages. 6 However, even participants who knew that finding a cure was unrealistic kept hoping for it. Still, these statements were linked with acceptance, whereas Teasdale et al. 6 reported frustration with the

KNOWLEDGE ABOUT THE DISEASE AND ITS COURSE
From first symptoms to diagnosis

Neutrally reported
Preven on is a constant concern, most importantly:  focus on eczema control (as opposed to a causal therapy).
While they conclude that insufficient information exacerbates frustration, our findings indicate that knowledge may reduce it. We could confirm previous findings 8 that acceptance of the skin condition is linked with the ability to take action and responsibility. In line with the existing literature, we found that the clarification of causes of the eczema is important for patients. 5,8-10 Sloot et al. 11 pointed out that treatment teams should emphasize multifactorial causes and discuss the limitations of the diagnostic procedures at an early consultation. Like Bathe et al., 8 we found that patients changed their physician when they were discontent with the provided treatment, which was to be expected since most of our study sites were tertiary referral centres. CHEPEP participants were satisfied with physicians who continued looking for solutions as was described earlier for patients with chronic pruritus. 20 Like previously interviewed patients with OSD, 8 CHEPEP participants appreciated allergy testing; however, in contrast to previous findings, 8,11 they reported no disappointment about negative or inconclusive results. We found an ambiguity in participants' understanding of 'treatment satisfaction' (perceived support vs results). Studies that assess patients' treatment experience must define that term clearly. Our investigation confirms patient needs reported in previous studies: allergy tests, referral 8 ; self-efficacy 8,9 ; research, 9 explanations 9,11 ; information on treatment and side effects, practical advice, access to healthcare when needed, being listened to and understood in consultations and functioning at work. 11 Sloot et al. 11 also emphasized the value of psychological care. Although CHEPEP participants expressed a need for psychological relief, there was no recurrent theme indicating how they hoped to achieve it. Many participants in Sloot et al. 11 had not been informed about patient organizations during their consultations and would have appreciated such information. None of our participants mentioned patient support groups or contact with other patients in general, which may suggest that they as well lacked this information. Bathe et al. 8 discussed that interventions should address fears of unemployment. While we encountered some worries, our participants expressed interest in advice and prognosis concerning their hands' functionality rather than emotional support.

IMPACT ON EVERYDAY LIFE
Several needs we found were not reported in previous studies, among them several evident needs (general examinations, treatment and prescriptions, cost-effective skin care and functioning in daily life). In addition, CHEPEP participants wished to try out further treatments and find new hope. It was also important to have perspectives for their occupational future. Moreover, the wish that people would better understand the burden of CHE was not previously reported.
Most of the needs reported in CHEPEP and previous studies 8,9,11 are addressed to physicians and other healthcare personnel, such as the feeling to be taken care of well. In the long run, it is also important for patients to function despite CHE, have career perspectives, accept the condition and learn to take care of themselves.

Strengths and limitations
The large number of respondents may be regarded as unusual for a qualitative investigation. The sample size made it possible to represent the participants' demographic characteristics similarly across five European countries and to safely discard any statements that occurred in only one or two interviews and still reveal numerous recurring themes. Moreover, the sample size allowed us to refine the template with lower-level subthemes that were previously reported (Appendix S3).
One limitation concerns the RV. Asking respondents to consider perspectives of other patients is demanding and our written instructions in some cases did not provide sufficient guidance. Caution is therefore warranted for assessments that were rated 'doubtful'. However, we carefully double-checked interview fragments that contained 'doubtful' statements and found no reason to delete any of these statements from the template. We consider that 'confirmed' assessments are trustworthy because respondents could choose the response 'don't know' when they were uncertain. RV is probably not an optimal technique to enhance the trustworthiness of findings when respondent perspectives are expected to vary, especially in multicentre studies, where it is not possible to perform face-to-face validations by the same researcher.
As another limitation, the study centres did not only translate the topic guide but also the transcribed interviews. In the process, some information may have been lost or slightly altered. The translations were necessary so that we could include patient perspectives from various countries.
Finally, we only interviewed patients whose HE was chronic and who were referred to one of our specialized clinics. Patients who are treated sufficiently by their general practitioners or resident dermatologists may have different perspectives and possibly less eczema-related worries.

Implications for practice
Previous publications have formulated recommendations for patient-centred eczema care 5,6,8,9,20 ; most detailed advice is provided by Sloot et al., 11 in particular the beneficial role of a specialized eczema nurse, or referral to patient support groups. Although our study design does not permit an evaluation of such strategies, they appear to be an adequate way to address the problems and healthcare gaps that our participants identified.
This structured report of patient statements may help healthcare providers who are not (yet) specialized in CHE to gain an overview of patient perceptions, may deepen the insight of specialists and may also encourage affected patients to voice their needs.

CONCLUSION
In patients with CHE who refer to specialized dermatological or occupational medicine clinics, the skin disease has a high emotional and social impact due to its annoying symptoms, impaired functioning at work and in private life and high visibility. Some patients may require support to learn coping with CHE. The usual preventive measures can be more or less effective but also cumbersome. Patients wish for information regarding underlying causes and situationspecific triggers. They value physicians who listen to them and keep looking for solutions.

AC K NO W L E D GE M E N T S
We thank all participants for sharing their views and experiences. Open Access funding enabled and organized by Projekt DEAL.

F U N DI NG I N FOR M AT ION
The European Academy of Dermatology and Venereology (EADV) has granted funding for conducting this study (PPRC-2019-27).

C ON F L IC T OF I N T E R E S T S TAT E M E N T
Christian Apfelbacher has received institutional funding from the Dr Wolff Group and Bionorica, and consultancy fees from the Dr Wolff Group, Sanofi, Bionorica and LEO Pharma. Andrea Bauer is involved in clinical trials on hand eczema (LEO Pharma, Sanofi) and is or recently was a speaker and/or advisor for and/or has received research funding from Novartis, Genentech, LEO Pharma, Sanofi, Regeneron, Shire, Takeda, Amgen, AstraZeneca, Abbvie, Celldex, Lilly, Pharvaris, Almirall, L'Oreal and Biofrontera. Swen Malte John was a speaker and/or advisor for LEO Pharma, Sanofi-Regeneron. Ana M. Giménez-Arnau is or recently was a medical advisor for Uriach Pharma/Neucor, Genentech, Novartis, FAES, GSK, Sanofi-Regeneron, Amgen, Thermo Fisher Scientific, Almirall, Celldex, LEO Pharma, received Research Grants supported by Uriach Pharma, Novartis, grants from Instituto Carlos III-FEDER and performed educational activities for Uriach Pharma, Novartis, Genentech, Menarini, LEO Pharma, GSK, MSD, Almirall, Sanofi and Avene. Tove Agner is involved in clinical trials on hand eczema (LEO Pharma) and has provided lectures or been in advisory boards for Sanofi, LEO Pharma, Pfizer, Abbvie and Eli-Lilly. Marie L.A. Schuttelaar received a research grant from Sanofi Genzyme; received consultancy fees from Sanofi Genzyme and Regeneron Pharmaceuticals; and is advisory board member for Sanofi Genzyme, Regeneron Pharmaceuticals, Pfizer, Abbvie, LEO Pharma and Lilly. The other authors have no conflicts of interest.

DATA AVA I L A BI L I T Y S TAT E M E N T
The data that support the findings of this study are available from the corresponding author, HR, upon reasonable request.