Hidradenitis suppurativa (HS) usually has an early onset, however, also onset in the mid-40 s may occur. Recently, the threshold of 28 years to distinguish patients with early and late onset has been ...proposed. The objective of our study was to compare the quality of life (QoL) and psychological distress in early- and late-onset HS patients. In this cross-sectional, observational study, consecutive patients diagnosed with HS aged ≥ 16 years were recruited. Dermatology-specific QoL was evaluated using the Skindex-17 questionnaire, and psychological distress using the 12-item General Health Questionnaire (GHQ-12). Patients were categorized into “early onset” (< 28 years) and “late onset” (≥ 28 years). Data were collected on 467 patients. Mean age at diagnosis was 21.6 years, with 22.0% of patients presenting with late disease onset. Patients with late onset reported worse psychosocial QoL and higher psychological distress compared to early onset. No differences between the two groups were observed for clinical severity. In the final multivariate model lower diagnostic delay, higher number of fistulae, higher BMI, ex-smoker, no localization on axillae, no localization on mammary region, presence of psoriasis, and higher scores on the psychosocial scale of Skindex-17 were statistically significantly associated with late onset. In conclusion, the psychosocial impact of HS is higher in patients with late onset compared to those with early onset. Differences between these two groups should be further investigated.
Summary
Background
Generic instruments measuring health‐related quality of life (HRQoL), like EQ5D™, enable comparison of skin diseases with healthy populations and nondermatological medical ...conditions, as well as calculation of utility data.
Objectives
To measure HRQoL in patients with common skin diseases and healthy controls across Europe using the EQ5D.
Methods
This multicentre observational cross‐sectional study was conducted in 13 European countries. Each dermatology clinic recruited at least 250 consecutive adult outpatients to complete questionnaires, including the EQ5D.
Results
There were 5369 participants (4010 patients and 1359 controls). Mean ± SD self‐rated health state reported by patients was 69·9 ± 19·7; for controls it was 82·2 ± 15·5. When adjusted for confounding factors, including comorbidity, mean patient EQ visual analogue scores were 10·5 points lower than for controls (standardized β = −0·23). Odds ratio with 95% confidence interval for impairment in all five dimensions of EQ5D adjusted for confounders was doubled for patients compared with controls. Patients with hidradenitis suppurativa (HS), blistering conditions, leg ulcers, psoriasis and eczemas had the highest risk for reduction in HRQoL in most dimensions (2–10‐fold). Data on differences of impairment by dimensions offer new insights.
Conclusions
This study confirms the large impact skin conditions have on patients’ well‐being, differentiating between aspects of HRQoL. Patients with HS, blistering diseases, leg ulcers, infections and most chronic skin diseases reported reduced HRQoL compared with patients with chronic obstructive lung disease, diabetes mellitus, cardiovascular disease and cancers. These findings are important in the prioritization of resource allocation between medical fields and within dermatological subspecialities.
What is already known about this topic?
The EQ5D™ can be used to compare life quality impairment from diseases across a range of specialties and to generate utility data.
The EQ5D has previously been little used in dermatology.
What does this study add?
This study has generated EQ5D data across a range of dermatological diagnoses in a large cohort of patients across Europe.
Skin diseases affect quality of life differently across different dimensions.
This EQ5D information may assist appropriate care and resource allocation.
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The impact of psoriasis on patients' quality of life may be quite destructive, and measures of disease status alone seem to have questionable validity in describing the true burden of illness. Our ...aim was to study, in patients with psoriasis, the relationship between classical measures of clinical status (i.e., PASI and SAPASI) and quality-of-life indexes (i.e., Skindex-29, Dermatology Life Quality Index, Psoriasis Disability Index, Impact of Psoriasis Questionnaire). In addition, two psychological distress indexes (i.e., Psoriasis Life Stress Inventory, 12-item General Health Questionnaire) were assessed. Data were collected between February 2000 and July 2001 at the inpatient wards of the Dermatological Institute IDI-IRCCS, Rome, Italy, in the framework of a large project on clinical, epidemiologic, emotional, and quality-of-life aspects of psoriasis. A cluster analysis of all the above-mentioned instruments was conducted on 786 eligible patients hospitalized with a diagnosis of psoriasis. Correlations between instruments were also analyzed in subsets of patients based on the main variables of interest. The instruments clustered in two distinct groups, one formed by clinical severity measurements and the other grouping all the quality-of-life and psychological indexes. The correlations between instruments observed in the subgroups determined by different sociodemographic and clinical variables showed the same pattern. In conclusion, the dissimilarity between clinical severity assessment and patient-centered measures stresses the need for a more comprehensive assessment of severity of psoriasis.
Psoriasis is associated with significant physical and psychological burden affecting all facets of a patient’s life – relationships, social activities, work and emotional wellbeing. The cumulative ...effect of this disability may be self‐perpetuating social disconnection and failure to achieve a ‘full life potential’ in some patients. Health‐related quality of life studies have quantified the burden of psoriasis providing predominantly cross‐sectional data and point‐in‐time images of patients’ lives rather than assessing the possible cumulative disability over a patient’s lifetime. However, social and economic outcomes indicate there are likely negative impacts that accumulate over time. To capture the cumulative effect of psoriasis and its associated co‐morbidities and stigma over a patient’s life course, we propose the concept of ‘Cumulative Life Course Impairment’ (CLCI). CLCI results from an interaction between (A) the burden of stigmatization, and physical and psychological co‐morbidities and (B) coping strategies and external factors. Several key aspects of the CLCI concept are supported by data similar to that used in health‐related quality of life assessments. Future research should focus on (i) establishing key components of CLCI and determining the mechanisms of impairment through longitudinal or retrospective case–control studies, and (ii) assessing factors that put patients at increased risk of developing CLCI. In the future, this concept may lead to a better understanding of the overall impact of psoriasis, help identify more vulnerable patients, and facilitate more appropriate treatment decisions or earlier referrals. To our knowledge, this is a first attempt to apply and develop concepts from ‘Life Course Epidemiology’ to psoriasis research.
The patient is the centre of a web of relationships, and the impact of his/her disease on family members and caregivers must be taken into account. The aim of this study was to identify the specific ...instruments that measure the impact of a dermatological disease on the quality of life (QoL) of family members, by performing a systematic search of the literature. Fifteen papers were identified, describing the creation and validation of nine instruments. Four of them concerned atopic dermatitis (Dermatitis Family Index, DFI; Parents’ Index QoL Atopic Dermatitis, PiQoL‐AD; QoL in primary caregivers of children with atopic dermatitis, QPCAD; Childhood Atopic Dermatitis Impact Scale, CADIS), two measured the impact of psoriasis in family members (Psoriasis Family Index, PFI; FamilyPso), one the impact of epidermolysis bullosa (Epidermolysis Bullosa Burden of Disease, EB‐BoD), one of ichthyosis (Family Burden Ichthyosis, FBI), and one was generic for dermatological conditions (Family Dermatology Life Quality Index, FDLQI). The European Academy of Dermatology and Venereology quality of life taskforce recommends 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. Guidelines are given to choose the most appropriate instruments.
Background
Hair diseases play an important burden on patients’ lives, causing significant emotional and psychosocial distress. However, the impairment due to different hair conditions, such as ...alopecia areata (AA) and androgenetic alopecia (AGA), has rarely been compared.
Objective
The aim of this study was to assess the psychological burden of subgroups of patients with different hair diseases and to compare them to a healthy population.
Methods
In this study, we analysed a subgroup of patients with hair diseases from patients of a large multicentre study including 3635 dermatological patients and 1359 controls from 13 European countries. In the subgroup of patients with hair diseases, we analysed the socio‐demographic characteristics, the stress level, and the impact of hair diseases on quality of life (QoL), anxiety, and depression and we compared them among patients with AA, AGA and healthy controls.
Results
The study population included 115 patients (77% women, 23% men) with hair diseases, 37 of whom with AA and 20 with AGA. Patients with hair diseases had a lower education level than healthy controls (medium educational level: 43% vs. 28%). Overall, 41% of the patients reported stressful life events during the last 6 months compared with 31% of the controls. Patients with the same age, sex, depression level and comorbidities had a worse QoL when suffering from AA than from AGA (Mean Dermatology Life Quality Index score: 5.8 vs. 2.5).
Conclusion
Patients with hair diseases are more anxious, depressed and have a lower QoL than controls.
Summary
Background
It was recently demonstrated that a significant number of patients with common skin diseases across Europe are clinically depressed and anxious. Studies have shown that physicians ...not trained as psychiatrists underdiagnose depression. This has not been explored among dermatologists.
Objectives
To estimate the concordance between clinical assessment of depression and anxiety by a dermatologist and assessment with the Hospital Anxiety and Depression Scale (HADS).
Methods
The study was an observational cross‐sectional multicentre study of prevalent cases of skin diseases in 13 countries in Europe. Consecutive patients were recruited in outpatient clinics and filled in questionnaires prior to clinical examination by a dermatologist who reported any diagnosis of skin disease and signs of mood disorders.
Results
Analysis of the 3635 consultations showed that the agreement between dermatologist and HADS was poor to fair (lower than 0·4) for all diagnosis categories. The true‐positive rate (represented by the percentage of dermatologists recognizing signs of depression or anxiety in patients with depression or anxiety as defined by a HADS value ≥ 11) was 44·0% for depression and 35·6% for anxiety. The true negative rate (represented by the percentage of dermatologists not detecting signs of depression or anxiety in non‐depressed or non‐anxious patients defined by HADS‐value < 11) was 88.8% for depression and 85.7% for anxiety.
Conclusions
Dermatologists in Europe tend to underestimate mood disorders. The results suggest that further training for dermatologists to improve their skills in diagnosing depression and anxiety might be appropriate. When present, the psychological suffering of patients with dermatological conditions needs to be addressed.
What's already known about this topic?
It has recently been demonstrated that patients with common skin diseases have more depression and anxiety than controls.
Research has shown that physicians who are not trained as psychiatrists miss depression in their patients.
What does this study add?
A large proportion of cases of depression in patients with skin disease are not diagnosed by dermatologists.
These results indicate that further training for dermatologists to assess depression and anxiety might be appropriate.
Linked Editorial: Montgomery and Thompson. Br J Dermatol 2018; 179:237–238.
Plain language summary available online
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