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Many events, including the COVID‐19 pandemic, have accelerated the implementation of teledermatology pathways within dermatology departments and across healthcare organizations. Quality of Life (QoL) assessment in dermatology is also a rapidly developing field with a gradual shift from theory to practice. The purpose of this paper organized jointly by the European Academy of Dermatology and Venereology (EADV) Task Force (TF) on QoL and patient‐oriented outcomes and the EADV TF on teledermatology is to present current knowledge about QoL assessment during the use of teledermatology approaches, including data on health‐related (HR) QoL instruments used in teledermatology, comparison of influence of different treatment methods on HRQoL after face‐to‐face and teledermatology consultations and to make practical recommendations concerning the assessment of QoL in teledermatology. The EADV TFs made the following position statements: HRQoL assessment may be an important part in most of teledermatology activities; HRQoL assessment may be easily and effectively performed during teledermatology consultations. It is especially important to monitor HRQoL of patients with chronic skin diseases during lockdowns or in areas where it is difficult to reach a hospital for face‐to‐face consultation; regular assessment of HRQoL of patients with skin diseases during teledermatology consultations may help to monitor therapy efficacy and visualize individual patient's needs; we recommend the use of the DLQI in teledermatology, including the use of the DLQI app which is available in seven languages; it is important to develop apps for dermatology‐specific HRQoL instruments for use in children (for example the CDLQI and InToDermQoL) and for disease‐specific instruments. [ABSTRACT FROM AUTHOR]

Purpose: Adjuvant treatment with immune checkpoint inhibitors like PD1-antibodies (ICI) ± CTLA4-antibodies (cICI) or targeted therapy with BRAF/MEK inhibitors (TT) in high-risk melanoma patients demonstrate a significant improvement in disease-free survival (DFS). Due to specific side effects, the choice of treatment is very often driven by the risk for toxicity. This study addressed for the first time in a multicenter setting the attitudes and preferences of melanoma patients for adjuvant treatment with (c)ICI and TT. Methods: In this study ("GERMELATOX-A"), 136 low-risk melanoma patients from 11 skin cancer centers were asked to rate side effect scenarios typical for each (c)ICI and TT with mild-to-moderate or severe toxicity and melanoma recurrence leading to cancer death. We asked patients about the reduction in melanoma relapse and the survival increase at 5 years they would require to tolerate defined side-effects. Results: By VAS, patients on average valued melanoma relapse worse than all scenarios of side-effects during treatment with (c)ICI or TT. In case of severe side effects, patients required a 15% higher rate of DFS at 5 years for (c)ICI (80%) compared to TT (65%). For survival, patients required an increase of 5–10% for melanoma survival during (c)ICI (85%/80%) compared to TT (75%). Conclusion: Our study demonstrated a pronounced variation of patient preferences for toxicity and outcomes and a clear preference for TT. As adjuvant melanoma treatment with (c)ICI and TT will be increasingly implemented in earlier stages, precise knowledge of the patient perspective can be helpful for decision making. [ABSTRACT FROM AUTHOR]

New treatment options may lead to an increased interest in using reliable and sensitive instruments to assess health‐related quality of life in people with alopecia areata (AA). The purpose of this paper is to present current knowledge about quality of life assessment in AA. The dermatology‐specific Dermatology Life Quality Index (DLQI) was the most widely reported health‐related quality of life instrument used in AA. Three AA‐specific (Alopecia Areata Symptom Impact Scale, Alopecia Areata Quality of Life Index and Alopecia Areata Patients' Quality of Life) and three hair disease‐specific instruments (Hairdex, Scalpdex and 'hair‐specific Skindex‐29') were identified with a range of content and validation characteristics: there is little evidence yet of the actual use of these measures in AA. Scalpdex is the best‐validated hair disease‐specific instrument. Further extensive validation is needed for all of the AA‐specific instruments. The European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes recommends the use of the dermatology‐specific DLQI questionnaire, hair disease‐specific Scalpdex and the alopecia areata‐specific instruments the Alopecia Areata Symptom Impact Scale or Alopecia Areata Quality of Life Index, despite the limited experience of their use. We hope that new treatment methods will be able to improve both clinical signs and health‐related quality of life in patients with AA. In order to assess the outcomes of trials on these new treatment methods, it would be helpful when further development and validation of AA‐specific instruments is being encouraged and also conducted. [ABSTRACT FROM AUTHOR]

Background: Chronic pruritus (CP) is a subjective symptom, and it is necessary to assess its intensity with validated patient‐reported outcome tools in order to allow determination of the treatment course. Objectives: So far, the itch intensity scales were validated in small cohorts and in single languages. Here, we report the validation of the numerical rating scale, the verbal rating scale and the visual analogue scale for the worst and average pruritus intensity in the last 24h in several languages across Europe and across different pruritic dermatoses. Methods: After professional translation, the intensity scales were digitized for use as a tablet computer application. Validation was performed in clinics for Dermatology in Austria, France, Germany, Italy, Poland, Russia, Spain, Switzerland and Turkey. Results: A total of 547 patients with contact dermatitis, chronic nodular prurigo, psoriasis vulgaris, lichen planus or cutaneous T‐cell lymphoma were included. The intensity scales showed a high level of reproducibility and inter‐correlations with each other. The correlation with the Dermatology Life Quality Index was weak to strong in nearly all countries and dermatoses with the exception of France and patients with chronic nodular prurigo, for which no statistically significant correlations were found. Conclusions: The numerical rating scale, the verbal rating scale und the visual analogue scales are valid instruments with good reproducibility and internal consistency in German (Germany, Austria, Switzerland), French, Italian, Polish, Russian, Spanish and Turkish for different pruritic dermatoses. VAS worst was the best reproducible and consistent measuring instrument in all countries. [ABSTRACT FROM AUTHOR]

The pandemic of COVID‐19 is a global challenge for health care, and dermatologists are not standing apart from trying to meet this challenge. The European Academy of Dermatology and Venereology (EADV) has collected recommendations from its Task Forces (TFs) related to COVID‐19. The Journal of the EADV has established a COVID‐19 Special Forum giving free access to related articles. The psychosocial effects of the pandemic, an increase in contact dermatitis and several other skin diseases because of stress, disinfectants and protective equipment use, especially in healthcare workers, the temporary limited access to dermatologic care, the dilemma whether or not to pause immunosuppressive therapy, and, finally, the occurrence of skin lesions in patients infected by COVID‐19 all contribute to significant quality of life (QoL) impairment. Here, we present detailed recommendations of the EADV TF on QoL and patient‐oriented outcomes on how to improve QoL in dermatologic patients during the COVID‐19 pandemic for several different groups of patients and for the general population. [ABSTRACT FROM AUTHOR]

Background: Atopic eczema (AE) is a common and burdensome chronic skin disease. Clinical guidelines suggest an evidence‐based, personalized and stepwise treatment approach. Only few studies have so far focused on the specific patient needs in treatment. Objectives: To characterize therapeutic needs of patients with AE in routine care. Methods: Nationwide cross‐sectional study in 91 dermatology practices and outpatient clinics. Descriptive statistics were used for valuation. Comparisons of HRQoL and general health status were performed including subgroups (age, gender and disease duration). Group comparisons of patient needs were performed for age groups, gender and disease duration. Correlations between patients' needs (PNQ) and HRQoL, generic health status and severity were tested. In addition, a hierarchical regression analysis was performed to determine which variables contribute to explain the variance in patient needs. Results: Analysis of 1678 patients (60.5% female, mean age 38.35 ± 15.92 years) revealed a high disease burden with mean SCORAD of 42.26 ± 18.63, mean DLQI of 8.49 ± 6.45 and mean EQ VAS of 63.62 ± 21.98. Among the patient needs that were most frequently rated as 'quite important'/'very important' were as follows: 'to be free of itching' (96.0%), 'to get better skin quickly' (7.8%) and 'to be healed of all skin defects' (85.7%). In general, older people, women and patients who had been diagnosed with AE for 1 year or less rated the treatment needs as more important than younger patients, men and patients who had been diagnosed with AE for more than 1 year. Major determinants of higher needs were skin‐related quality of life impairments, higher disease severity and higher age. Conclusions: Patients with AE show a high number and variety of therapeutic needs related to disease signs and symptoms, which are associated with individual disease burden. The patient needs vary substantially according to patient characteristics. Identification of patient‐specific needs may support personalized, patient‐centred care and shared decision‐making. [ABSTRACT FROM AUTHOR]

Background: Though patient needs are key drivers of treatment decisions, they are rarely systematically investigated in routine care. Objective: This study aimed at analysing needs and expectations from the patient perspective in the German and Swiss psoriasis registries PsoBest and Swiss Dermatology Network of Targeted Therapies (SDNTT) with respect to treatment choice, age and gender. Methods: The German and Swiss psoriasis registries observe patients recruited at first‐time use of systemic drugs. Within 10 years, clinical [Psoriasis Area Severity Index (PASI), Body Surface Area (BSA)] and patient‐reported outcomes are documented, including the Dermatology Quality of Life Index (DLQI) and the Patient Benefit Index (PBI), characterizing patient needs for treatment. The analysis data set includes n = 4894 patients from PsoBest and n = 449 from SDNTT with mean follow‐up time of 7.5 months. Results: A total of 5343 patients registered between 2008 and 2016 were included in the analyses (at baseline: 59.6% male, mean age 47.6 years ± 14.5, PASI 14.2 ± 9.7, BSA 22.7 ± 19.7, DLQI 11.3 ± 7.2). The most important patient needs were to 'get better skin quickly' and to 'be healed of all skin defects'. Subgroup analyses by age revealed significant differences in needs, especially higher needs regarding social impairments in patients younger than 65 years. Patients 65 years or older attributed more importance to sleep quality, less dependency on medical visits, fewer side‐effects and confidence in the therapy. Out of 25 items reflecting patient needs, 20 items were rated significantly more important by women than men, with the greatest differences regarding feeling of depression, sleep quality and everyday productivity. Divided by treatment, needs were rated differently, recommending individualized and targeted choice of therapy. Conclusion: Age and gender stratify patient needs. Women showed higher expectations and rated specific needs in psoriasis treatment higher than men. Analysing the patient needs on an individual level will facilitate shared decisions by patient and physician in finding the optimal personalized treatment. [ABSTRACT FROM AUTHOR]

Background: Chronic pruritus (CP) is a frequently occurring symptom in inflammatory dermatoses, causing a high burden and limitations to health‐related quality of life (HRQoL). Objective: The ItchyQoL was developed to assess the impairment to HRQoL in patients with CP. However, it has only been validated in English and German. Here, we report the validation in several languages across Europe. Methods: After professional translation, the versions of ItchyQoL were digitized for use as a tablet application. Validation was performed in clinics for dermatology in Austria, France, Germany, Italy, Poland, Russia, Spain, Switzerland and Turkey. Results: Five hundred and thirty‐five patients with either contact dermatitis, chronic prurigo – nodular type, psoriasis vulgaris, lichen planus or mycosis fungoides/Sézary syndrome and with CP ≥ 3 on the numerical rating scale were included. ItchyQoL showed a high level of consistency (Cronbach's‐α, all: 0.95) and test‐retest reliability (intraclass correlation: 0.91). It strongly correlated with the Dermatology Life Quality Index (r = 0.72, P < 0.001) and moderately correlated with itch intensity scales in the study population (visual analogue scale r = 0.46; numerical rating scale r = 0.51; verbal rating scale r = 0.51, for all: P < 0.001). Conclusion: ItchyQoL is now also validated in French, Italian, Polish, Russian, Spanish and Turkish and can be used in clinical trials in countries speaking these languages. [ABSTRACT FROM AUTHOR]

Summary: Background: Chronic lymphoedema (CLE) is a burdensome disease of multiple causes leading to significant reductions in health‐related quality of life (HRQoL). A specific method to assess HRQoL is the Freiburg Life Quality Assessment for lymphoedema (FLQA‐L), which consists of 92 items. Objectives: To develop and validate a short form of the FLQA‐L with improved psychometric properties and feasibility. Methods: The FLQA‐L validation data were reanalysed by patients and experts. The application of factor analysis enabled the exclusion of lower‐load items. An optimized short version of the questionnaire (FLQA‐LS) with 33 items was generated and tested in a validation study on patients with different forms of CLE. Results: In total, 348 patients with CLE of the upper or lower extremities were included (mean age 57.3 years, range 24–89; 90.8% female), and data from 301 patients could be analysed. Overall, 42.8% of the patients had secondary lymphoedema, 23.6% had primary lymphoedema, 9.5% had lipoedema and 24.1% had lipolymphoedema. The lower extremities were mostly affected (64.4% of the patients presented with leg involvement and 17.5% with both arm and leg impairment). The FLQA‐LS showed good internal consistency, with high Cronbach's alpha in the subscales and in the global scale ranging between 0.79 and 0.94. Regarding convergent validity, a good correlation was found with the general HRQoL questionnaire EQ‐5D (r = 0.72, P < 0.001). Conclusions: FLQA‐LS is an improved version of the FLQA‐L questionnaire for chronic lymphoedema. It demonstrated validity and feasibility and can be easily used in clinical practice and research studies. What's already known about this topic? Lymphoedema is a chronic, burdensome condition that markedly impairs health‐related quality of life. What does this study add? A short form of the Freiburg Life Quality Assessment for lymphoedema (FLQA‐LS) is a valid and feasible instrument to measure health‐related quality of life in patients with lymphoedema.What are the clinical implications of this work? Linked Comment: Chalmers. Br J Dermatol 2018; 179:1244–1245. Plain language summary available online Respond to this article [ABSTRACT FROM AUTHOR]

Background Chronic lymphoedema is characterized by a continuous need for medical treatment, many comorbidities and impaired quality of life. In Germany, about 4.5 million patients are affected by lymphoedema. Thus, lymphoedema causes high direct and indirect costs, even more in case of complications such as erysipelas and ulcers. Objective The aim of this study was to determine the costs of illness of community lymphoedema patients living in the metropolitan area of Hamburg, Germany. Methods An observational cross-sectional study in patients with lymphoedema and combined lipolymphoedema of any origin was performed analysing direct and indirect costs for the patients, the statutory health insurance and society. Results In total, 348 patients (90.8% female) were examined and interviewed. The mean age of the patients was 57.3 ± 14.5 years. On average, the total costs per patient and year were € 5784, of which € 4445 (76.9%) were direct costs and € 1338 indirect costs. Within the direct medical costs, € 3796 were accounted for the statutory health insurances and € 649 for the patient. The main cost drivers were costs for manual decongestive therapy and disability costs. Conclusion Chronic lymphoedema is associated with high direct and indirect costs. This community-based study is the first cost analysis of chronic lymphoedema and combined lipolymphoedema giving insights to economic impact of lymphoedema treatment. There is a high need for structured disease management programs in order to diagnose and treat lymphoedema early and to avoid complications, thus limiting socio-economic burden. [ABSTRACT FROM AUTHOR]

Background Patients suffering from chronic pruritus ( CP) due to dry skin with are often applying emollients containing menthol. However, topical menthol may be irritating and of weak potency in severe pruritus. Two TRPM8 agonists, (1R,2S,5R)-N-(2-(2-pyridinyl)ethyl)-2-ispropyl-5-methylcyclohexancarboxamide and menthoxypropanediol, combined as cooling compound ( CC) have shown stronger activation of TRPM8 than menthol. Objectives Objective of this study was to evaluate the efficacy and safety of CC in alleviating pruritus in patients with dry itchy skin. Methods In this vehicle-controlled, double-blind, randomized (1 : 1) study, 70 dry skin patients with pruritus intensity measured by Numerical Rating Scale ( NRS) ≥3, were treated twice daily over 4 weeks, either with a lotion containing CC or with its vehicle. Results At treatment end, pruritus, assessed by a global score, improved significantly more in the CC than in the vehicle group (79.2% vs. 47.1%; P < 0.05; primary endpoint). Also assessed by verbal rating scale ( VRS) and percentual improvement, pruritus decreased significantly more in the CC group ( P = 0.007/ P = 0.015) compared to vehicle arm after treatment. Up to 84% of CC-treated patients reported a significant, sometimes too strong, long-lasting cooling effect. The health-related quality of life improved significantly more in the CC group ( P = 0.023). Skin roughness, dryness and hydration improved significantly in both groups without significant differences in-between them. There were no severe adverse events reported. Conclusions Treatment of dry and pruritic skin with a lotion containing the TRPM8 agonist combination ameliorates severe pruritus and represents a possible novel treatment for the burdensome symptom. The most suitable treatment concentration needs still to be identified. ClinicalTrials.gov: NCT00669708. [ABSTRACT FROM AUTHOR]

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Background TRANSIT ( NCT01059773) compared immediate and gradual transition from methotrexate to ustekinumab in psoriasis patients via multiple measures, including patient-reported outcomes. Objective To evaluate patient perception of treatment benefits in TRANSIT. Methods A total of 489 psoriasis patients received ustekinumab, with immediate cessation of methotrexate (Arm 1) or 4 weeks' overlap with decreasing methotrexate dose (Arm 2). Ustekinumab was administered at weeks 0, 4, 16, 28 and 40. Dermatology Life Quality Index ( DLQI), EuroQol 5-item ( EQ-5D), visual analogue scale ( VAS) valuation technique and patient benefit index ( PBI) were employed. Mean global PBI and sub-scores were calculated from the sum of the benefit items weighted by their respective relevance at baseline. Patient-relevant benefit was defined as PBI ≥1 (scale: 0 [no benefit] to 4 [maximum benefit]). Correlations of global PBI with Psoriasis Area and Severity Index ( PASI) and DLQI were examined. Results Relationships between PBI and clinical data were evaluable in 340 patients. The most important treatment goals at baseline included: 'be healed of all skin defects', 'have confidence in therapy', 'get better skin quickly' and 'regain control of the disease'. Benefit in PBI global score was achieved at week 4 by 93% of patients in Arm 1 and 91% in Arm 2. Global PBI scores increased in both Arms between weeks 4 and 52. Global PBI correlated weakly with PASI change from baseline (correlation coefficient range: −0.22 to −0.40), and moderately with DLQI (−0.29 to −0.54). Overall DLQI score was lower than baseline at all times; and the percentage of patients with an overall score of 0 or 1 increased with time. Correspondingly, EQ VAS scores increased with time. DLQI and EQ VAS results were similar between arms. Conclusions Regardless of the strategy for transitioning from methotrexate, ustekinumab was associated with rapid and sustained improvement in patient-reported outcomes. PBI appears a suitable tool for assessing patient-relevant treatment benefits in psoriasis patients. [ABSTRACT FROM AUTHOR]

Background Chronic pruritus ( CP) is present in approximately one-third of all dermatological patients. Diagnostics and treatment are challenging and impair patients' quality of life. Objectives To analyse therapeutic needs in terms of the importance of treatment goals in a large sample of patients with CP. Methods Routine data of 2747 patients with CP were analysed with descriptive methods and significance tests (univariate and multivariate variance analyses). The importance of 27 need items was measured using the Patient Needs Questionnaire of the Patient Benefit Index. Results The most important needs were to find a clear diagnosis and treatment, to no longer experience itching and to have confidence in the therapy, which were quite or very important to > 90% of the patients. The least important goals concerned a normal working or sex life. Nine needs related mostly to disease and psychological symptoms, and some social needs differed in importance between sexes ( P ≤ 0·05). Patients with pruritus on inflamed skin or with chronic scratch lesions judged more than half of all needs as more important than did patients with pruritus on noninflamed skin ( P ≤ 0·05). In the multivariate model, age, pruritus intensity and quality of life had a significant effect on the importance of therapeutic needs besides sex and pruritus classification. Conclusions Patients with CP present high levels of various therapeutic needs with differences by sex and clinical phenotype. The most important needs can be addressed through medical activities such as appropriate itch medication and a trustful doctor-patient relationship. [ABSTRACT FROM AUTHOR]

Background Chronic pruritus is a frequently occurring symptom of various dermatoses that causes a high burden and impaired quality of life. An effective anti pruritic therapy is important for the patient, but its effectiveness is difficult to evaluate. Diverse methods and interpretations of pruritic metrics are utilized in clinical trials and the daily clinical practice in different countries, resulting in difficulties comparing collected data. Methods We founded a European Network on Assessment of Severity and Burden of Pruritus (PruNet) that is supported by the EADV. PruNet consists of 28 experts from 15 EU countries (21 dermatologists, 5 medical informaticists, 2 psychologists) and aims to unify the assessment of itch in routine dermatological care. Following a preliminary survey, a consensus conference was held in order to agree upon the prioritization of patient-reported outcome tools. Results Through utilizing the Delphi method, it was agreed that tools for measuring itch intensity (ex. the visual analogue scale) and quality of life (ex. ItchyQoL) are of primary importance and should urgently be foremost validated. Conclusion The validation and harmonization of standards are needed for the improvement of quality care for patients suffering from pruritic dermatoses. This summer, the first validation studies in several EADV member countries already began. [ABSTRACT FROM AUTHOR]

Background Chronic pruritus is a subjective symptom, mainly measured through patient reported outcomes. Our aim is to assess two different methods regarding the change of symptoms: a visual dynamic pruritus score ( vDPS) documented by patients, and a numerical value ( nDPS) documented by physicians. Methods Inferential statistics and reliability analyses have been performed on data collected in 2013. Results Data of 701 patients were analysed (45.6% males, 54.4% females, mean age 60 ± 16 years). The nDPS showed less extreme and generally lower values than the vDPS. There was a slight concordance between both methods; the highest concordance was seen for no/weak change and very good reduction. Conclusion The difference between patient and physician assessed same score points to an important bias in pruritus assessment which has to be taken into account especially in clinical trials. Though further studies are needed, the patient-based assessment seems to be less biased by a social desirability effect. [ABSTRACT FROM AUTHOR]

Purpose: Patient-centered health care implies that medical decisions are made jointly by physician and patient, based on patient needs. Aims were to (a) identify treatment goals for a new questionnaire on patient needs and benefits in nail psoriasis treatment; (b) analyze the importance of treatment goals in patients with nail psoriasis in general and in defined subgroups; and (c) determine the association between overall treatment goal importance and quality of life.Methods: The study comprised the following steps: qualitative survey on needs and burdens in 120 patients; development of items by an interdisciplinary expert group; item testing in 55 patients in four countries; revision of the questionnaire and assessment in 203 patients in six countries (Germany, Denmark, Italy, Spain, USA, Japan). The percentage of patients rating the goals as 'quite/very important' was compared between various patient subgroups.Results: Based on 692 free-text statements, 26 items were developed which were reduced to 24 items after pilot testing. Each of these treatment goals applied to the majority of patients in the multi-center study. Goal importance increased with severity of nail psoriasis, but not with age or disease duration. Manual dexterity and social interaction were of particular importance. Goal importance and quality of life were associated, but not redundant (r = 0.612, p < 0.001).Conclusions: Patients with nail psoriasis have manifold and specific treatment goals. Goal importance is a construct different from disease-specific quality of life and should be assessed separately. The new questionnaire can support goal setting in clinical practice. [ABSTRACT FROM AUTHOR]

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Copyright of Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz is the property of Springer Nature and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Linked Article: Masmoudi et al. Br J Dermatol 2021; 184:1106–1112. [ABSTRACT FROM AUTHOR]

Background Existing tools for nail psoriasis are complex and may not adequately measure outcomes that are important to patients. Objectives We have developed and validated a new tool, the Nail Assessment in Psoriasis and Psoriatic Arthritis ( NAPPA), with three components: a questionnaire assessing quality of life ( NAPPA-QoL), a two-part questionnaire assessing patient-relevant treatment benefits (the Patient Benefit Index, NAPPA- PBI) and a psoriasis Clinical Assessment of Severity ( NAPPA- CLIN). Methods Development of the questionnaires involved multiple steps: (i) collection of items about nail psoriasis-related impairments and treatment goals; (ii) selection of 48 items by an expert panel, including patients; (iii) translation into eight languages; (iv) feasibility testing and (v) longitudinal validation in six countries. Results Patients found the questionnaires clear (84%) and comprehensible (95%). NAPPA- Qo L and NAPPA- PBI scores correlated moderately with clinical outcomes [e.g. Nail Psoriasis Severity Index ( NAPSI)] and markedly with other quality-of-life questionnaires (e.g. EQ- 5D™). Both questionnaires were sensitive to change. Internal consistency was good (Cronbach α ≥ 0·88 for all scales). The NAPPA- CLIN, a brief version of NAPSI that involves assessment of only four digits rather than all 20, was found to correlate highly with total NAPSI score ( r = 0·97, P < 0·001). Conclusions Overall, the three-component NAPPA tool is a valid, reliable and practical instrument to assess patient-relevant nail psoriasis outcomes. [ABSTRACT FROM AUTHOR]

Background: The management of lymphoedema is complex and should be based on guidelines. To date, no data assessing quality of care in lymphoedema in Germany are available. Objective: We aimed at evaluating the quality of care of lymphoedema in the metropolitan area of Hamburg using guideline-based indicators. Methods: Cross-sectional, community-based study including patients with lymphoedema. Assessment included a structured interview, clinical examination and patient-reported outcomes. Quality indicators derived from guidelines by a Delphi consensus were applied. Results: 348 patients (median age 60.5 years) with lymphoedema (66.4%), lipoedema (9.5%) or combined oedema (24.1%) were included. 86.4% performed compression therapy, 85.6% received lymphatic drainage. On average 55.0% of the quality of care criteria were met; 64.8% were satisfied with care. The distribution curve of the health care index was almost normal. Treatment by specialists led to a higher quality of care index. Conclusion: Although overall quality of care in lymphoedema is fair, many patients are not treated properly according to guidelines. Copyright © 2013 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Background Treatment of lymphoedema is complex and needs specific skills. There are no standards for the evaluation of quality of care. Objective Development and application of indicators for the measurement of quality of care in lymphoedema. Methods In a three-step process including a national Delphi expert consensus, quality indicators were derived from national and international guidelines. In a cross-sectional study involving a large spectrum of care providers, the quality of lymphoedema care in the community was assessed by transforming the indicators to one unweighted quality index (QI). Results A total of 12 quality indicators were identified and applied to n = 348 patients with lymphoedema and lipolymphoedema of any origin in the metropolitan area of Hamburg (90.8% female, mean age 57, SD 14.5 years). On average, 55% of the quality indicators were met, and 64.8% of the patients were satisfied with lymphoedema care. There was a significant correlation between QI and satisfaction. Conclusions The quality indicators and the QI are feasible and valid for the evaluation of quality of care. They can support optimizing lymphoedema care. [ABSTRACT FROM AUTHOR]

Copyright of Der Hautarzt is the property of Springer Nature and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background: This study investigates the health-related quality of life in patients with vulvar lichen sclerosus (LS) and the patient-defined therapeutic benefit of clobetasol. Methods: A survey analysis of 96 women with LS after treatment with clobetasol was performed. Quality of life was assessed with the Skindex-29. The Patient Benefit Index (PBI) was used to determine the therapeutic benefit. Results: The overall response rate was 59.2%. Quality of life was most impaired by somatic symptoms (scale 'Symptoms' score 3.2) and emotional stress (scale 'Emotions' score 3.1), while social interactions (scale 'Functioning' score 1.9) played an inferior role (p < 0.001). Primary therapeutic goals 'to have confidence in the therapy' and 'to be free of itching' were achieved in 73.2 and 69.0% of patients who indicated the goal applied to them. The global PBI score was 3.06. In 93.2% of patients it was >1, indicating a potential benefit from clobetasol. Conclusion: Topical clobetasol is of potential therapeutic benefit for patients with vulvar LS and might therefore improve quality of life. Copyright © 2011 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Background: Allergic rhinitis (AR) is a common disease that affects health-related quality of life (HRQoL). Current and future health policy demands the assessment of patient-relevant treatment benefit for evaluation of treatments. Methods: We developed, validated and tested a standardized instrument for the assessment of patient-relevant needs and benefits in AR. In an open survey of patients with AR, 100 need and benefit items were generated. The items were condensed to a 25-item list by an expert panel. On this list, patient rates the personal importance of 25 treatment needs on a scale ranging from 'not at all' to 'very' before treatment (Patient Needs Questionnaire, PNQ). At the end of the treatment, patient rates the extent, to which these needs were achieved by treatment from 'did not help at all' to 'helped a lot' (Patient Benefit Questionnaire). The patient benefit index (PBI) is computed to provide a global weighted benefit parameter. This disease-specific instrument was validated in n = 104 patients with AR. Results: The PBI-AR showed good acceptability and feasibility in clinical routine. Reduction in nose and eye symptoms was rated most important. The PBI amounted to 2.2 (PBI ranges from 0 = 'no benefit' to 4 = 'maximum benefit'). Reliability of the PNQ was high (Cronbach's alpha = 0.9).The PBI was significantly correlated with relevant external validation criteria, such as patient satisfaction (R = 0.54) and HRQoL (R = 0.26). Conclusion: The PBI-AR is a feasible, reliable and valid instrument for the standardized assessment of patient-relevant benefits in the treatment of AR. [ABSTRACT FROM AUTHOR]

Background Although nail psoriasis affects a marked proportion of patients with psoriasis and causes significant psychological stress, only few epidemiological data characterizing patients with nail involvement are available. Objectives To gain robust data on the epidemiology and disease burden of nail psoriasis in Germany. Methods Two nationwide, noninterventional, cross-sectional studies on psoriasis health care were conducted in 2005 and 2007, involving 48 (2005) and 130 (2007) German office-based and clinic-based dermatological centres. Data of n = 3531 patients with psoriasis were collected using standardized questionnaires and physical examinations by trained dermatologists. Patients with nail psoriasis were compared with patients without any nail involvement concerning sex, age, disease duration, family history, disease severity, presence of psoriatic arthritis (PsA), health-related quality of life (HRQoL), number of inpatient therapies, and days off work. Results Nail psoriasis was diagnosed in 40·9% of the patients; prevalence was 11·2 percentage points higher in men than in women. Patients with nail involvement had a longer disease duration (21·9 vs. 18·1 years), higher disease severity (mean Psoriasis Area and Severity Index 12·7 vs. 9·3), higher frequency of PsA (26·0% vs. 12·7%), stronger impairment of HRQoL (mean Dermatology Life Quality Index 8·9 vs. 7·3), and a 2·5-fold higher rate of inpatient treatments. Conclusions Nail involvement is a relevant manifestation of psoriasis and is associated with a higher disease severity and quality of life impairment. Accordingly, management of psoriasis should include a special focus on nail involvement. [ABSTRACT FROM AUTHOR]

Melanoma depends on, interacts with and reacts to the stroma in which it is embedded, including fibroblasts, extracellular matrix, endothelial cells and immune cells. However, the impact of melanoma on the epidermal tumor microenvironment—the multilayered epithelium of the skin—is poorly understood. Gap junctions are essential for intercellular communication and involved in proliferation, differentiation and homeostasis of keratinocytes. We have shown previously that the gap junction proteins connexin 26 and 30 (Cx26 and Cx30) are induced in the epidermal tumor microenvironment of skin cancers including melanoma. This study compares the extent of Cx26, Cx30 and Cx43 expression in the epidermal microenvironment of melanocytic nevi and melanomas and its association with melanoma thickness, proliferative index of the tumor and its microenvironment, and with 5-year metastasis and survival. We found that induction of Cx26 and Cx30 cell–cell border expression in the epidermal tumor microenvironment correlates to malignancy. Importantly, there was a significant correlation of tumor thickness with the vertical epidermal Cx26 and Cx30 expression pattern and the horizontal Cx26 dissemination. Furthermore, horizontal Cx26 expression correlated with metastasis. Vertical epidermal expression patterns of Cx26 and Cx30 significantly correlated with the proliferative index in the epidermal tumor microenvironment but not with the proliferative index in the tumor. In contrast, Cx43 did not correlate with malignancy, thickness or proliferative index. In summary, here we show for the first time a significant association between the progression of melanoma and alterations in its epithelial tumor microenvironment. [ABSTRACT FROM AUTHOR]

Background The assessment of patient-relevant benefit is gaining importance in evaluating treatments. The ‘Patient Benefit Index, standard version’ questionnaire (PBI-S) is a validated instrument to assess patients’ treatment needs and benefits in skin diseases. Before therapy, the patient rates the importance of predefined treatment goals; after therapy, he rates the extent to which these goals have been achieved. Thus far, no such instrument has been developed specifically for pruritus. Objectives Development and validation of a patient-relevant benefit questionnaire in the treatment of pruritus. Methods Fifty patients with pruritus were questioned on impairments due to pruritus and treatment needs. Four treatment objectives not already covered by the PBI-S were added to obtain a disease-specific instrument. This was tested for feasibility by 36 patients with pruritus and validated in a sample of 100 patients with pruritus. Results The instrument was feasible in clinical practice. There were < 2% missing values. Cronbach’s alpha of the needs questionnaire was 0·93. Convergent validity was demonstrated with respect to reduction of pruritus and quality of life. Conclusions The PBI for pruritus is a feasible, reliable and valid instrument that is highly accepted in daily routine for recording patient-reported benefit. [ABSTRACT FROM AUTHOR]

Background Psoriatic arthritis (PsA) is a chronic, systemic, inflammatory disorder characterized by the association of arthritis with psoriasis. Patients with PsA may have a heterogeneous and variable clinical course. Evidence that affected patients can have significant radiographic joint damage, functional impairment, reduced quality of life and long-term work disability is increasing. Objectives This study aims to determine the prevalence and clinical features of psoriatic arthritis and joint complaints in patients with psoriasis examined in a German national survey. Methods This study is a non-interventional, cross-sectional analysis on 2009 patients with psoriasis from 13 dermatological hospitals and 129 dermatological private practices and outpatient clinics in Germany. Patients showing rheumatological symptoms were further recorded with respect to active arthritis and PsA symptoms according to Group for Research and Assessment of Psoriasis and Psoriatic Arthritis criteria. Results Nineteen per cent of the patients had PsA, including 14.8% previously confirmed and 4.2% newly diagnosed disease. Another 7.7% had intermittent but clinically unspecific joint symptoms, which could not be clearly attributed to PsA. About half (49.7%) of the patients with PsA had at least 1 swollen joint and 84.9% ( n = 287) suffered from joint pain. Patients suffering from pain marked an average of 8.7 joints on a diagram as painful out of a possible 28. The mean number of swollen joints among the affected patients amounted to an average of 6.8. Conclusion Our results show that there is still a significant number of patients suspected of having joint involvement without ever having been diagnosed with PsA. Recently published data indicate that progression of joint damage and functional disability can be prevented if adequate treatment is started promptly. Early diagnosis and interdisciplinary care are thus crucial. Conflicts of interest None declared. [ABSTRACT FROM AUTHOR]

In the next decade the scientific community expects a strong impact in physics, chemistry, biology, material research and life sciences by the availability of high-brilliance X-ray radiation from free-electron laser (FEL) sources. In particular, in the field of ultrafast science these new sources will allow new types of experiments, enabling new phenomena to be discovered. Whereas today ultrafast X-ray diffraction experiments are strongly restricted by the limited X-ray flux of current sources of sub-picosecond X-ray pulses, FELs will provide short pulses of typically 1012 photons with a duration of the order of 100 fs and monochromaticity of 10−3. Here, the feasibility of time-resolved single-shot powder diffraction experiments using these intense pulses, and the requirements of these experiments, are discussed. The detector count rates are estimated for diffraction from a model compound in a wide q-regime under the special consideration of high resolving power. In the case of LCLS radiation parameters, single-shot experiments will be feasible although high-resolution powder diffraction will require a reduction of the intrinsic FEL radiation bandwidth. [ABSTRACT FROM AUTHOR]

A structure's health or level of damage can be monitored by identifying changes in structural or modal parameters. This research directly identifies changes in structural stiffness due to modelling error or damage for a post-tensioned pre-cast reinforced concrete frame building with rocking beam column connections and added damping and stiffness (ADAS) elements. A structural health monitoring (SHM) method based on adaptive least mean squares (LMS) filtering theory is presented that identifies changes from a simple baseline model of the structure. This method is able to track changes in the stiffness matrix, identifying when the building is (1) rocking, (2) moving in a hybrid rocking-elastic regime, or (3) responding linearly. Results are compared for two different LMS-based SHM methods using an error norm metric. In addition, two baseline models of the structure, one using tangential stiffness and the second a more accurate bi-linear stiffness model, are employed. The impact of baseline model complexity is then delineated. The LMS-based methods are able to track the non-linearity of the system to within 15% using this metric, with the error due primarily to filter convergence rates as the structural response changes regimes while undergoing the El Centro ground motion record. The use of a bi-linear baseline model for the SHM problem is shown to result in error metrics that are at least 50% lower than those for the tangential baseline model. Errors of 5-15% with this error norm are fairly stringent compared to the greater than 2 × changes in stiffness undergone by the structure, however, in practice the usefulness of the results is dependent on the resolution required by the user. The impact of sampling rate is shown to be negligible over the range of 200-1000Hz, along with the choice of LMS-based SHM method. The choice of baseline model and its level of knowledge about the actual structure is seen to be the dominant factor in achieving good results. The methods presented require 2.8-14.0 Mcycles of computation and therefore could easily be implemented in real time. Copyright © 2005 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Data from the Coast Range ophiolite and its tectonic outliers in the northern California Coast Ranges suggest that the lower part of the ophiolite formed 169 to 163 Ma in a forearc or back arc setting at equatorial latitudes. Beginning about 156 Ma and continuing until 145 Ma, arc magmatism was superimposed on the ophiolite, and concurrently, a transform developed along the arc axis or in the back arc area. Rapid northward translation of this rifted active magmatic arc to middle latitudes culminated in its accretion to the California margin of North America at about 145 Ma. This Late Jurassic episode of translation, arc magmatism, and accretion coincided with the Nevadan orogeny and a proposed major plate reorganization in the eastern Pacific basin. The high rate of poleward motion necessary to translate the Coast Range ophiolite to middle latitudes during this time implies that the ophiolite traveled north on a fast-moving plate of the eastern Pacific basin, here termed plate X. Plate X probably was driven by a cryptic ridge east-northeast of the Pacific-Farallon-Izanagi ridge triple junction. Structural relations indicate that following Late Jurassic time, parts of the Coast Range ophiolite were displaced from the west side of the Great Valley province and incorporated into the Central belt of the Franciscan Complex along steep-dipping to low-angle reverse faults having dominant components of dextral shear. A northwest trending eastern zone of these right-laterally displaced outliers shows strong affinities to the main Coast Range ophiolite of the northwestern Sacramento Valley (the Elder Creek terrane), in that the outliers include ophiolitic breccias of Oxfordian to Kimmeridgian age. A southwestern zone of outliers lacks ophiolitic breccia and instead includes latest Oxfordian or Kimmeridgian to Tithonian, arc-derived volcanic rocks like those found in the Del Puerto and Stanley Mountain terranes of the main ophiolite. Whereas outliers of the northeastern outlier zone are right-laterally displaced no more than 260 km from the western side of the Sacramento Valley, outliers of the southwestern zone are displaced a minimum of 169 to 249 km. This displacement occurred between about 60 and 52 Ma. Ophiolitic rocks in the Decatur terrane of western Washington that have recently been correlated with the Coast Range ophiolite and the Great Valley sequence of California were apparently displaced at least 950 to 1200 km from the west side of the Great Valley between early Tertiary and Early Cretaceous time. Derived rates of northward translation for the ophiolite outliers in California are in the range of 1 to 4 cm/yr. Rates for the Decatur terrane are in the range of 2.5 to 4 cm/yr if translation was initiated 90 Ma, but as much as 11.9 to 15 cm/yr if it was not initiated until 60 Ma. The lower rates for the Decatur terrane are consistent with the rates derived for the California outliers and with the northward component of relative motion between the Farallon and North American plates from 90 to 50 Ma. The higher rates require northward transport on the Kula plate or on a fast-moving microplate. The higher translation rates derived for the Decatur terrane are also consistent with paleomagnetically determined rates for some limestones of the Central belt. This may indicate that outliers of the Coast Range ophiolite dispersed in the Central belt of the Franciscan Complex record only part of the total displacement which occurred along the Late Cretaceous to early Tertiary western margin of North America. [ABSTRACT FROM AUTHOR]

Linked Article:Wyrwich et al. Br J Dermatol 2020; 183:702–709. [ABSTRACT FROM AUTHOR]

Linked Article: Randa et al. Br J Dermatol 2020; 183:96–104. [ABSTRACT FROM AUTHOR]

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Summary: The lymphatic system is a network of small vessels draining clear fluid (lymph) from all bodily tissues. Many different disorders, including birth defect, infection and malignancy (cancer), can cause blockage of the system, resulting in chronic swelling, usually affecting arms or legs. This "lymphoedema" causes considerable discomfort and affects many aspects of the patient's life. Health‐related quality of life (QOL) is an important measure in health care, but to date the only QOL measure for patients with lymphoedema has been the Freiburg Life Quality Assessment for lymphoedema (FLQA‐L) ‐ a reliable measure but just too detailed for regular use in clinical practice, having 92 questions. This study from Germany aimed to create a more user‐friendly version. First, they re‐analysed the original FLQA‐L data and identified 33 questions which appeared most informative, covering 5 domains: physical impairments, daily life, social life, mental health and therapy. This shorter version (FLQA‐LS) was then mailed out to 348 lymphoedema patients at 33 clinics; 91% were women and the average age was 57 years. 295 patients completed the questionnaire. The items scoring highest (meaning having the highest impact) were "anxiety about a possible worsening of the disease", "feeling pain in the arm or leg", "joint pain" and "time‐consuming treatments", while impairment of social life showed the lowest values. Statistical analysis of the results showed good correlations with other general health related QOL scores. The FLQA‐LS appears to be a valuable assessment tool for patients with lymphoedema and now needs to be tested in patients over time. Linked Article: Augustin et al. Br J Dermatol 2018; 179:1329–1333 [ABSTRACT FROM AUTHOR]