Measuring the impact of dermatological conditions on family and caregivers: a review of dermatology‐specific instruments

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This paper is organized jointly by the European Academy of Dermatology and Venereology (EADV) Task Force (TF) on Quality of Life (QoL) and Patient‐Oriented Outcomes and the EADV TF on acne, rosacea and hidradenitis suppurativa (ARHS). The purpose of this paper was to present current knowledge about QoL assessment in HS, including data on HS‐specific health‐related (HR) QoL instruments and HRQoL changes in clinical trials, and to make practical recommendations concerning the assessment of QoL in people with HS. HS results in significant quimp that is higher than in most other chronic skin diseases. HS impact in published studies was assessed predominantly (84% of studies) by the Dermatology Life Quality Index (DLQI). There is a lack of high‐quality clinical trials in HS patients where HRQoL instruments have been used as outcome measures. One double‐blind randomized placebo‐controlled trial on infliximab with low number of participants reported significantly better HRQoL improvement in the treatment group than in the placebo group. Well‐designed clinical studies in HS patients to compare different treatment methods, including surgical methods and assessing long‐term effects, are needed. Because of lack of sufficient validation, the Task Forces are not at present able to recommend existing HS‐specific HRQoL instruments for use in clinical studies. The EADV TFs recommend the dermatology‐specific DLQI questionnaire for use in HS patients. The EADV TFs encourage the further development, validation and use of other HS‐specific, dermatology‐specific and generic instruments but such use should be based on the principles presented in the previous publications of the EADV TF on QoL and Patient‐Oriented Outcomes.

Section: Discussionmentioning

confidence: 99%

Quality of life measurement in hidradenitis suppurativa: position statement of the European Academy of Dermatology and Venereology task forces on Quality of Life and Patient‐Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa

Chernyshov

Zouboulis

Tómas-Aragonés

et al. 2019

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“…16 2 The deviated immune response towards Th2-dominant responses with increased immunoglobulin E production and distinct inflammatory events leading to allergic reactions against a multitude of environmental allergens from the air or from foods. 26,[30][31][32][33][34] The actual degree of individual suffering in the single patient has so far not received adequate attention in scientific literature. 21,22 The disease goes along with a remarkable economic burden both for the affected individual and for society and with marked impairment in quality of life.…”

Section: Introductionmentioning

confidence: 99%

Atopic eczema: burden of disease and individual suffering – results from a large EU study in adults

Ring

Zink

Arents

et al. 2019

128

112

Background Atopic eczema (AE, atopic dermatitis) is one of the most common non‐communicable inflammatory skin diseases affecting 1–5% of the adult population in Europe with marked impairment in quality of life. In spite of great progress in understanding the pathophysiology of disturbed skin barrier and immune deviation, AE still represents a problem in daily clinical practice. Furthermore, the true impact of AE on individual suffering is often not recognized. Objectives With a large European study, we wanted to provide insights into the actual suffering and individual burden of disease in adult patients with AE. Methods A total of 1189 adult patients (18–87 years, 56% female) with moderate to severe AE were recruited in nine European countries by dermatologists or allergists together with the help of patient organizations. A computer‐assisted telephone interview was performed by experienced interviewers between October 2017 and March 2018. The following instruments were used to assess severity or measure quality of life: Patient‐Oriented Eczema Measure (POEM), Dermatology Life Quality Index (DLQI), Hospital Anxiety and Depression Scale (HADS‐D) and a newly developed Atopic Eczema Score of Emotional Consequences (AESEC). Patients were also asked to self‐assess the severity of their disease. Results Despite current treatment, 45% of participants still had actual moderate to very severe AE in POEM. Due to their skin disease, 57% missed at least 1 day of work in the preceding year. DLQI showed moderate to extremely large impairment in 55%. According to HADS‐D, 10% scored on or above the threshold of eight points with signs of depressive symptoms. Assessed with AESEC, 57% were emotionally burdened with feelings such as ‘trying to hide the eczema’, ‘feeling guilty about eczema’, having ‘problems with intimacy’ and more. Of persons actually suffering from severe AE, 88% stated that their AE at least partly compromised their ability to face life. Conclusions This real‐life study shows that adults with a moderate to severe form of AE are suffering more than what would be deemed acceptable. There is a need for increased awareness of this problem among healthcare professionals, policymakers and the general public to support research in the development of new and more effective treatments and provide access to better and affordable health care for affected patients.

“…The European Academy of Dermatology and Venereology (EADV) quality of life task force advocates that the impact of a skin disease on family and caregivers should be measured as part of any thorough evaluation of the burden of a disease. 48 Regarding the hypothetical health states, the mean cTTO utilities were 0.41 for uncontrolled PV, 0.52 for uncontrolled PF and 0.66 for controlled PV/PF. Utilities may be obtained from patients or the general population.…”

Section: Discussionmentioning

confidence: 98%

“…Pemphigus may not only adversely affect HRQoL of patients but also places a burden on caregivers. The European Academy of Dermatology and Venereology (EADV) quality of life task force advocates that the impact of a skin disease on family and caregivers should be measured as part of any thorough evaluation of the burden of a disease …”

Section: Discussionmentioning

confidence: 99%

Patient‐assigned health utility values for controlled and uncontrolled pemphigus vulgaris and foliaceus

Hajdu

Brodszky

Stalmeier

et al. 2019

Background The assessment of health‐related quality of life (HRQoL) in patients with pemphigus is now of increasing interest due to the availability of highly effective new therapies. Preference‐based HRQoL values or health utilities required for medical and financial decision‐making are not yet available directly from pemphigus patients. Objective To obtain health utility values for current health and hypothetical health states from the perspective of pemphigus patients. Methods A cross‐sectional questionnaire survey was carried out with pemphigus patients. Disease severity was rated by Autoimmune Bullous Skin Disorder Intensity Score (ABSIS). Patients were asked to evaluate their current health as well as three common hypothetical pemphigus health states [uncontrolled pemphigus vulgaris (PV), uncontrolled pemphigus foliaceus (PF) and controlled PV/PF] by using composite time trade‐off (cTTO). Multiple regression was applied to explore determinants of utility values. Results Responses of 108 patients (64.8% women, mean age 57.4 years) were analysed. Mean ABSIS score was 11.6. The mean utility values for the hypothetical uncontrolled PV, uncontrolled PF and controlled PV/PF health states were 0.41, 0.52 and 0.66 with cTTO. The mean cTTO scores for current health were higher compared with the hypothetical health states (0.76; P < 0.001). Patients with higher ABSIS, worse pain intensity scores and those having a caregiver reported lower utility values for current health (P < 0.05). Conclusions In pemphigus, HRQoL impairment expressed in utility values seems to be considerable, especially in comparison with other chronic dermatological conditions (e.g. psoriasis, atopic eczema, chronic hand eczema). These health utilities inform physicians, policymakers and funders about the overall extent of health loss in pemphigus and provide evidence to guide medical decisions and cost‐effectiveness analyses of treatment strategies. Future research is needed to evaluate the caregiver burden in pemphigus.