Measurement of healthcare quality in atopic dermatitis – development and application of a set of quality indicators

Steinke, Sabine; Fc, Beikert; Langenbruch, Anna; Fölster-Holst, Regina; Ring, Johannes; Schmitt, Jochen; Werfel, Thomas; Hintzen, S.; Franzke, Nadine; Augustin, Matthias

doi:10.1111/jdv.15074

Cited by 16 publications

(13 citation statements)

References 40 publications

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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%

“…29 Furthermore, there are deficits in quality of health care for the affected persons and their families. 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. In addition, studies focusing on patients' self-help have shown a high unmet need with the call for more patient support groups 35 as well as reliable online health information.…”

Section: Introductionmentioning

confidence: 99%

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

Ring

Zink

Arents

et al. 2019

Acad Dermatol Venereol

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128

112

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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.

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Section: Introductionmentioning

confidence: 99%

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

Acad Dermatol Venereol

Self Cite

128

112

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“…Working life is negatively influenced, reflecting in increased sick leave, job choices, job changes and job losses, or even disability pensions for patients severely affected [7]. Moreover, AE can have a significant impact on patients' quality of life and their mental health [8,9]. In this context several studies have reported that patients can experience a substantial reduction in quality of life and can suffer from depression and other mental health disorders as measured with different screening and scoring tools [10].…”

Section: Introductionmentioning

confidence: 99%

Atopic eczema score of emotional consequences—a questionnaire to assess emotional consequences of atopic eczema

Arents

Mensing²,

Seitz³

et al. 2019

Allergo J Int

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Purpose Atopic eczema (AE, atopic dermatitis), one of the most common chronic skin diseases worldwide, can dramatically influence the lives of affected patients as well as the lives of their families. Despite the availability of several questionnaires for assessing the impairment of quality of life, so far the emotional consequences of AE have received limited attention. The purpose therefore was to develop an instrument to assess the emotional consequences of AE in affected adults. Methods The Atopic Eczema Score of Emotional Consequences (AESEC) was developed based on a review of available instruments and by consulting individuals with AE about the emotional consequences of AE through social media. Validation was performed in a test-sample, followed by a large cross-sectional study in patients with AE across nine European countries. AESEC results were compared with the Patient Oriented Eczema Measure (POEM), the Dermatology Life Quality Index (DLQI) and the Hospital Anxiety and Depression Scale (HADS). Results A 28-item questionnaire on emotional consequences of having AE was developed. Applied to 1189 participants, AESEC showed high reliability and correlated well with DLQI, HADS and POEM. More than

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“…1 Because of its chronic nature, intense itch resulting in scratching and eczematous cutaneous changes, AD has a considerable deteriorating effect on life quality of the affected child. 3 A recent expert consensus 4 suggested that quality of life measurement represents the key indicator of quality of AD-related care. 3 A recent expert consensus 4 suggested that quality of life measurement represents the key indicator of quality of AD-related care.…”

Section: Introductionmentioning

confidence: 99%

Factors associated with improvement of quality of life among parents of children with atopic dermatitis: 1‐year prospective cohort study

Maksimović

Zaric²,

Reljić

et al. 2019

Acad Dermatol Venereol

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Background Previous studies exploring the impact of atopic dermatitis (AD) in children focused on factors associated with parental quality of life at one point in time. Objective To examine factors associated with change of quality of life among parents of children affected with AD. Methods The study cohort comprised 98 parent–children pairs treated for AD at the Clinic of Dermatovenereology; however, 18 parents (18.4%) were lost to follow‐up after 1 year. Children were assessed with SCORing Atopic Dermatitis Index (SCORAD) and Children Dermatology Life Quality Index (CDLQI) or the Infants’ Dermatitis Quality of Life Index (IDQOL), depending on their age. Parents filled in socio‐demographic questionnaire and Dermatitis Family Impact Questionnaire (DFI). After 1 year, both children and parents were reassessed using the same AD‐related battery of questionnaires. Results After follow‐up, a significant improvement in the average total DFI score was observed, especially for domains of fatigue/exhaustion, emotional distress and impact of helping in child treatment. Lower baseline SCORAD, greater improvement of SCORAD over follow‐up, better CDLQI/IDQOL at baseline, greater improvement in CDLQI/IDQOL over follow‐up, not having asthma and having older child with AD were associated with better parental quality of life after 1 year of follow‐up. Parental higher education level, shorter AD duration, better baseline SCORAD and greater improvement in CDLQI/IDQOL over follow‐up were associated with greater improvement in parental life quality over 1 year of follow‐up. Conclusion Contributors to parental quality of life after 1 year included clinical features of AD and child's comorbidity (asthma), but also the perception of child's quality of life and its improvement.

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Measurement of healthcare quality in atopic dermatitis – development and application of a set of quality indicators

Cited by 16 publications

References 40 publications

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

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

Atopic eczema score of emotional consequences—a questionnaire to assess emotional consequences of atopic eczema

Factors associated with improvement of quality of life among parents of children with atopic dermatitis: 1‐year prospective cohort study

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