Personal, financial and time burden in inherited ichthyoses: A survey of 144 patients in a university-based setting.

BACKGROUND: Patients with inherited ichthyosis suffer from scaling due to mutations affecting the epidermal barrier. Symptomatic treatment with ointments, bathing and mechanical scale removal can alleviate the disease, but therapy is time and cost intensive. OBJECTIVES: We investigated costs, time and disease burden of ichthyoses. The study addresses difficulties of the healthcare situation for patients with ichthyoses and reveals potential improvements. MATERIALS AND METHODS: We developed a questionnaire addressing time and financial effort for the treatment. Additionally, we collected data of the Dermatology Life Quality Index (DLQI) and the Pruritus Life Quality (5PLQ) questionnaires to determine the impact of ichthyosis and associated pruritus on quality of life (QoL). RESULTS: We recruited 144 patients with ichthyosis (median age: 23; 53.5% female) from the Department of Dermatology in Muenster (Germany) and the German patient support group including common, rare and syndromic subtypes. Eighty-seven percent reported applying topical therapeutics at least once per day, 66.4% several times with an overall median duration of 15 min. Highest single expenditure of time was due to balneotherapy (n = 115; median bathing time: 40 min). In 81.9%, the health insurance did not completely cover the costs for topical treatment causing additional financial burden to the patient with a median of 71 € per quarter, herein creams being the largest cost factor (50 €). Patients with Netherton syndrome showed the highest median expenditure (170 €). The QoL impairment under treatment was moderate (median DLQI: 8.5 points). Pruritus was prevalent in 79.9% and showed a distinct impact on QoL (median 5PLQ: 7.5 points) without any significant difference between the subtypes (p = 0.37). CONCLUSION: Patients suffering from ichthyoses have a large and lifelong overall burden in mild and severe subtypes. Since continuous topical treatment is required, financial and psychosocial support needs to be considered beyond dermatological care.

Assessment of stigma related to visible skin diseases: a systematic review and evaluation of patient-reported outcome measures.

Misconceptions about visible skin diseases are widespread, and patients often face discrimination and stigmatization due to their condition. The associated negative health and psychosocial consequences of stigmatization in skin diseases have prompted an increase in research activity in recent times, resulting in a wide variety of assessment measures. This study aimed at aggregating and evaluating evidence of psychometric properties and methodological quality of published measures to assess stigma in visible skin diseases. Studies assessing stigmatization in visible skin diseases were searched in four databases (Medline, PsycINFO, Web of Science and Embase) until February 2021. The review followed PRISMA guidelines. Papers regarding development and/or validation of measures were identified by two independent researchers. Inclusion criteria were defined as follows: (i) quantitative studies in (ii) populations with skin diseases using (iii) questionnaires explicitly assessing (iv) perceived or public stigmatization or discrimination available in (iv) English or German language. The COnsensus-based Standards of health Measurement INstruments (COSMIN) checklist was used to evaluate their psychometric properties and risk of bias. 35 studies using 21 instruments were identified. Twenty instruments focused on assessing the perceived reality of those affected by visible skin diseases, while public stigma was only assessed by two instruments. Twelve scales could be recommended for use, while nine instruments had the potential to be recommended after further studies have assessed their quality. Some limitations are to be noted. Only studies in English and German were included. Research on self-constructed instruments can lead to new validated instruments, but they were not included in the review at this point. Several validated instruments could be recommended for use. Future research is needed regarding the assessment of stigma across different visible skin diseases, in children and adolescents, and in the general public.

Stigma in visible skin diseases - a literature review and development of a conceptual model.

The burden of visible skin diseases (VSDs) includes not only physical symptoms but also psychosocial consequences such as depression, anxiety, impaired quality of life and low self-esteem. Stigmatization was shown to play a major role in people with skin diseases. The aim of the study was to review the evidence for the components, drivers and impacts of (self-)stigma, and to organize the data into a series of conceptual models. A targeted literature search was conducted to identify studies on (self-)stigma in relation to VSD. Conceptual models of stigma in VSDs were developed from existing generic conceptual models for VSD and of generic conceptual models of stigma and were refined after discussion with a board of experts, patient advocacy groups, clinicians and researchers. A total of 580 references were identified, of which 56 references were analysed and summarized. Two conceptual models of stigma were identified: one with external stigma and self-stigma dimensions, the other for self-stigma in mental health. These models were adapted to allow a complete description of stigma in VSDs. For this, a distinction was made between 'discrimination' and 'impact'. Finally, five models were developed: macro-overview; stigma, impact and socio-demographics; stigma, impact and disease characteristics; stigma, impact and quality of life; and stigma, impact and coping. Gaps were identified in available quantitative evidence. To our knowledge, this is the first conceptual model of stigma in VSDs. The model will help to standardize evaluation of stigma and to enhance empirical evaluation of anti-stigma interventions in VSDs. Further research should be conducted to develop a more complete model in stigma due to significant gaps in existing evidence, particularly including the stigma in others (external stigma) and also to cover a broader range of VSDs as their impact on particular dimensions of stigma differs.

Secukinumab effects on disease burden, patient needs and benefits, and treatment satisfaction in patients with plaque psoriasis across European regions: patient perspective data from the PROSE study.

BACKGROUND: Cross-cultural differences in healthcare policies and patient-physician communication may influence the quality of care and patients' perceived benefits and satisfaction with psoriasis treatment. OBJECTIVES: To compare the disease burden and patient needs at baseline, and patient benefits and satisfaction with secukinumab treatment across Europe. METHODS: PROSE was an open-label, prospective, non-randomized, stratified multicentre study of 52 weeks of secukinumab treatment, in 16 European countries. Secondary analysis of the PROSE study data by European regions was performed to identify cross-cultural differences in disease burden and patient needs at baseline, and in clinical improvement, patient-reported treatment benefits and satisfaction at 52 weeks post-treatment. RESULTS: At baseline, Dermatology Life Quality Index impairment was reported to be greater in patients from Eastern Europe (EE: 15.4 ± 7.1) vs. Northern Europe (NE: 13.3 ± 6.7) and Western Europe (WE: 13.6 ± 6.9), but while differences were statistically significant (F-test = 5.5, P < 0.001), their clinical significance is uncertain. There were no significant differences between regions in Psoriasis Area and Severity Index at baseline (F-test = 1.6). There were considerable differences in patients' needs (Patient Need Questionnaire) between geographical regions, with WE focused more on reducing physical impairment [vs. Southern Europe (SE)/EE], EE on reducing social impairment (vs. NE/WE) and SE on reducing impairment due to therapy (vs. NE/WE). At Week 52, patients from EE reported more benefits (Patient Benefit Index) with secukinumab treatment (vs. WE/SE), while patients from NE reported higher global treatment satisfaction (vs. SE). CONCLUSIONS: Differences in patients' needs and treatment satisfaction across Europe are likely a result of diverse medical systems, socio-economic status and infrastructural access. A patient-centred approach to treating psoriasis may fulfil patient needs and maximize treatment satisfaction. (NCT02752776).

Mapping risk factors for cumulative life course impairment in patients with chronic skin diseases - a systematic review.

Patients with chronic skin diseases suffer from physical and psychosocial impairments which can lead to a cumulative life-long burden. Therefore, the concept of cumulative life course impairment (CLCI) was introduced, referring to the non-reversible damage due to the persistent life-long burden. This systematic review (PROSPERO registry number: CRD42020179141) aimed at mapping the risk factors and the associated burden over time in patients with psoriasis, atopic dermatitis (AD) and hidradenitis suppurativa (HS). Three electronic databases were searched (date of the last search: December 2019). Studies with a longitudinal study design that assessed the association between a risk factor and the associated burden over time in patients with psoriasis, AD and HS were included. Quality assessment of the included studies was done using Critical Appraisal Skills Programme (CASP) checklists. In total, 40 publications reflecting 25 different studies were included: nine studies addressed patients with psoriasis, 13 patients with AD, two studies included patients with HS and one study enrolled patients with psoriasis and AD, respectively. Twenty-two potential risk factors with underlying evidence were found in this review. These risk factors include mainly sociodemographic (such as age or gender) and clinical (such as disease severity or comorbidities) variables. Disease severity and comorbidities were the most often studied risk factors, while only a few studies evaluated psychosocial risk factors over time. Patients with chronic skin diseases are at high risk to develop a life-long negative impact from the disease. However, there is a lack of data that evaluates the psychosocial burden and its influence on the patients' life course over time. The risk factors found in this review help to identify patients at risk, to treat them adequately and, ultimately, to prevent CLCI. These results can be the basis to develop a highly needed tool to assess the risk for CLCI in the future.

Significance of chronic pruritus for intrapersonal burden and interpersonal experiences of stigmatization and sexuality in patients with psoriasis.

BACKGROUND: 60-90% of patients with psoriasis suffer from pruritus and 65% report itching as one of the most burdensome symptoms, raising significant quality of life (QoL) impairments. However, pruritus is not only an intrapersonal symptom but also a psychosocial interactive phenomenon and little is known about the effects of itching on interpersonal experiences. OBJECTIVES: This study aimed to compare the disease burden and patient needs between patients with none/mild vs. moderate/severe pruritus, and to examine the impact of disease parameters and intrapersonal burden on perceived stigmatization and sexual relationships. METHODS: This cross-sectional study included German patients aged ≥ 18 years with psoriasis vulgaris. Disease severity was assessed with Psoriasis Area and Severity Index; patients reported on intensity of pruritus, skin-generic and pruritus-specific QoL, patient needs and benefits, anxiety and depression symptoms, dysmorphic concerns, perceived stigmatization and sexual dysfunction. RESULTS: A total of 107 patients with psoriasis participated (mean age = 46.3 ± 14.6 years; 52.3% male): 64 with none/mild pruritus (NRS ≤ 3) and 43 with moderate/severe pruritus (NRS ≥ 4). Patients with moderate/severe pruritus reported more QoL impairments, depression and anxiety symptoms and dysmorphic concerns, but less treatment benefits, than those with none/mild pruritus. The patient needs most frequently rated as 'very/quite important' were 'be healed of all skin defects' (88.8%), and 'be free of itching' (87.0%), with no differences between the groups. Younger age, disease severity, frequency of scratching behaviours, dysmorphic concerns and treatment benefits were positively associated with stigmatization experiences; disease severity, sleeping problems and skin-generic QoL impairments were positively associated with sexual dysfunction. CONCLUSIONS: Pruritus induces significant burden in patients with psoriasis. Along with disease severity, intrapersonal burden has a great impact on social and dyadic relationships. Treatment choices that are effective in reducing pruritus should be prioritized in patient-centred healthcare.

Perception and determinants of stigmatization of people with psoriasis in the German population.

BACKGROUND: Perception of psoriasis in the general population is characterized by knowledge deficits and prejudice against those affected. The extent and possible predictors of stigmatizing attitudes remain unclear. OBJECTIVES: The aim was to assess prejudices and stigmatization of people with psoriasis and to identify sociodemographic and attitude-related variables accounting for stigmatization. METHODS: Representative telephone surveys of 2004 (in 2017) and 2001 (in 2018) adults using a standardized questionnaire. Descriptive analyses were applied to living area, age, gender, educational status, general knowledge and attitudes about psoriasis. Logistic regression analyses were carried out to determine which variables are associated with the assessment of prejudices of 'others' against people with psoriasis. Those prejudices were specified by the following statements: 'they should take better care of themselves', 'don't want to touch people with psoriasis' and 'disgusted by psoriasis'. RESULTS: The majority of those surveyed (74%) believe that people with psoriasis are disadvantaged. Similarly, a majority (69%) said that most people find psoriasis disgusting, do not want to touch people with psoriasis (59%) and think that people with psoriasis need to take better care of themselves (45%). 'Willing to enter a relationship with an affected person' (OR = 0.330, P = 0.029), higher age (OR = 1.027, P <0.001) and male gender (OR = 1.263, P = 0.034) proved to be significantly associated with 'psoriasis is disgusting'. Education (OR = 1.648, P = 0.016) and lower age (OR = 0.847, P  <0.001) are significantly associated with 'they need to take better care of themselves'. CONCLUSIONS: Data suggest that stigmatization of skin diseases is still entrenched. This overview shows the need for interventions against stigmatization of those affected. Results imply that gender, age and education level and related health literacy of the target groups of respective interventions should be taken into account.

Disease burden and patient needs and benefits in anogenital psoriasis: developmental specificities for person-centred healthcare of emerging adults and adults.

BACKGROUND: Establishing romantic relationships involving cohabitation and/or sexual intercourse is an overriding task for many people during emerging adulthood, i.e. from their late teens through the twenties. The diagnosis of anogenital psoriasis may hinder social/intimate relationships, resulting in higher disease burden in this age group. OBJECTIVES: To compare the disease burden and patient needs/benefits between emerging adults (18-30 years) and adults (>30 years) with psoriasis, with and without anogenital involvement; and to identify sociodemographic/clinical variables accounting for better patient-reported outcomes. METHODS: Patients aged ≥18 years with psoriasis vulgaris were recruited within a cross-sectional nationwide survey randomly assigning 157 dermatology practices/clinics in Germany. Anogenital involvement was established based on a high-resolution grid on the topology of psoriasis. The main outcome measures were the Psoriasis Area and Severity Index (PASI), the EuroQoL visual analogue scale (EQ-VAS), the Dermatology Life Quality Index (DLQI) and the Patient Benefit Index (PBI). RESULTS: Participants were 1921 patients: 173 emerging adults and 1749 adults >30 years. Anogenital involvement was observed in 621 patients (32.3%). Patient with anogenital psoriasis reported decreased health and more QoL impairments compared with those without anogenital lesions. Emerging adults presented more QoL impairments and less treatment benefits than older patients, and they were more prone to underrate a wide range of needs, except when the anogenital area was affected. Beyond anogenital involvement and higher disease severity, less treatment benefits were associated with more QoL impairments, particularly for emerging adults. CONCLUSIONS: The developmental instability of many emerging adults may result in difficulties to establish/adhere to treatment goals and thus in decreased perception of treatment benefit and more QoL impairments. Anogenital involvement is a risk factor for increased disease burden regardless of age. Assessing anogenital involvement in all patients and helping younger patients to define/adhere to treatment goals should be prioritized in patient-centred healthcare for psoriasis.

Characterizing treatment-related patient needs in atopic eczema: insights for personalized goal orientation.

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' (87.7%) 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.

Epidemiology and dermatological comorbidity of seborrhoeic dermatitis: population-based study in 161 269 employees.

BACKGROUND: Seborrhoeic dermatitis is a common but epidemiologically poorly researched chronic skin disease. OBJECTIVES: To characterize the prevalence and dermatological comorbidity of seborrhoeic dermatitis in Germany. METHODS: In the course of voluntary company skin checks, full-body examinations were carried out in more than 500 companies by experienced dermatologists and documented electronically. RESULTS: In total, 161 269 participants were included (men 55·5%, mean age 43·2 ± 10·9 years). Seborrhoeic dermatitis was identified in 3·2% (men 4·6%, women 1·4%). A significant difference was found between age groups (2·0% in < 35; 3·6% in 35-64; 4·4% ≥ 65 years). The most frequent concomitant skin conditions were: folliculitis [17·0%, 95% confidence interval (CI) 15·9-18·1], onychomycosis (9·1%, 95% CI 8·3-10·0), tinea pedis (7·1%, 95% CI 6·3-7·8), rosacea (4·1%, 95% CI 3·6-4·7), acne (4·0%, 95% CI 3·4-4·5) and psoriasis (2·7%, 95% CI 2·3-3·2). Regression analysis revealed the following relative dermatological comorbidities when controlling for age and sex: folliculitis [odds ratio (OR) 2·1, 95% CI 2·0-2·3], contact dermatitis (OR 1·8, 95% CI 1·1-2·8), intertriginous dermatitis (OR 1·8, 95% CI 1·4-2·2), rosacea (OR 1·6, 95% CI 1·4-1·8), acne (OR 1·4, 95% CI 1·2-1·7), pyoderma (OR 1·4, 95% CI 1·1-1·8), tinea corporis (OR 1·4, 95% CI 1·0-2·0), pityriasis versicolor (OR 1·3, 95% CI 1·0-1·7) and psoriasis (OR 1·2, 95% CI 1·0-1·5). CONCLUSIONS: Seborrhoeic dermatitis is a common disease, which is more prevalent in men and older people, and it has an increased rate of dermatological comorbidity. However, absolute differences in the prevalence of comorbidities are small and negligible. Nevertheless, the findings underline the need for integrated, complete dermatological diagnostics and therapy.

Topology of psoriasis in routine care: results from high-resolution analysis of 2009 patients.

BACKGROUND: Different phenotypes have been described in psoriasis. Few details are known about the topology of patients in routine care. OBJECTIVES: To characterize the frequency and distribution of body sites affected by psoriasis in Germany. METHODS: Data from a national cross-sectional study (PsoHealth2) were analysed. Each practice consecutively recruited 20 patients independently of treatment. Topical distribution was identified with a detailed grid scheme of 1424 squares filled by the patient. Psoriasis history, clinical findings, comorbidity and patient-reported outcomes were obtained. RESULTS: In total, 2009 patients with psoriasis were observed. Nineteen per cent of patients had psoriatic arthritis, 65·4% had scalp involvement and 35·6% had nail involvement; in 40·5% of patients, their first-degree relatives also had psoriasis. In total, 1927 (95·9%) provided complete grid data. The mean number of grids marked was 152·4 ± 193·2, corresponding to 10·7% of body surface area. The most frequently affected body areas were the elbows, knees, lower legs and scalp (65-78%). In a linear regression analysis (corrected R² = 0·093), the strongest predictors of reductions in health-related quality of life (HRQoL), measured by the Dermatology Life Quality Index, were having the hands (ß = 0·147; P = 0·000), arms (ß = 0·097; P = 0·008), genitals (ß = 0·080; P = 0·010), neck (ß = -0·072; P = 0·043), scalp (ß = 0·068; P = 0·010) and nails affected (ß = 0·064; P = 0·005). CONCLUSIONS: Typical psoriatic lesions are found in real-world care. However, smaller areas are important determinants of reductions in HRQoL.

Strategies to reduce stigma related to visible chronic skin diseases: a systematic review.

Many patients with a visible chronic skin disease experience discrimination and stigmatization. This results in psychosocial impairments in addition to the burden of disease and emphasizes the urgency to implement effective stigma-reduction strategies. To synthesize what is known globally about effective interventions to reduce stigma associated with visible chronic skin diseases, a systematic review was conducted. Four electronic databases were searched until May 2018. Studies evaluating interventions to reduce stigmatization in patients with visible chronic skin diseases and applying at least one stigma-related outcome measure were included. Data were extracted on study design, country, study population, outcome measures and main findings. Results were subsequently synthesized in a narrative review. Critical Appraisal Skills Programme tools were used to assess study quality. Nineteen studies were included in the review. Study design was very heterogeneous and study quality rather poor. Thirteen studies addresses patients with leprosy in low- and middle-income countries, and one study each targeted patients with onychomycosis, leg ulcer, facial disfigurement, atopic dermatitis, vitiligo and alopecia. Evaluated interventions were mainly multi-faceted incorporating more than one type of intervention. While 10 studies focused on the reduction in self-stigma and 4 on the reduction in public stigma, another 5 studies aimed at reducing both. The present review revealed a lack of high-quality studies on effective approaches to reduce stigmatization of patients with visible chronic skin diseases. Development and evaluation of intervention formats to adequately address stigma is essential to promote patients' health and well-being.

Translating the WHA resolution in a member state: towards a German programme on 'Destigmatization' for individuals with visible chronic skin diseases.

BACKGROUND: Even today, a substantial number of individuals with visible skin diseases still suffer from incomprehension and stigmatization. About 10 million people are affected by such diseases in Germany. The WHO strongly urges member states to take measures against stigmatization in skin diseases. OBJECTIVES: Objectives are the development of an action programme to raise awareness and address stigmatization. Therefore, conception, development and testing of interventions for the destigmatization of persons with skin diseases in Germany will be carried out. METHODS: A series of actions addressing decision makers, politicians and the Federal Ministry of Health were initiated, all based on the World Health Assembly (WHA). Argumentation was largely based on data from health services research. Supported by the Federal Ministry of Health, a concept against stigmatization was developed by an expert consortium of researchers, dermatologists and patients. Specific strategies of structured destigmatization between those affected and those not will be developed and scientifically evaluated. RESULTS: The activities addressed to politics were - to a large extent - successfully and financially supported by a 3-year programme (2018-2020), designed to develop interventions against stigma. It was funded by the Federal Ministry of Health. The project includes conception and development, intervention and evaluation, data analyses and development of a long-term concept. CONCLUSIONS: The WHO's call against stigmatization in psoriasis (resolution WHA67.9 and global report on psoriasis 2016) was taken into account and developed into a destigmatization programme supported by the German government and German politicians. This has been achieved by successful collaborations between dermatologists, researchers, patients and policymakers. Next step will be the testing of interventions in situations and surroundings, where stigmatization usually occurs. The data will be used for the implementation of a long-term concept that can be used to continue destigmatization in Germany far beyond the project's initial phase.

Gender and age significantly determine patient needs and treatment goals in psoriasis - a lesson for practice.

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.

[Perception of stigmatization in people with psoriasis-qualitative analysis from the perspective of patients, relatives and healthcare professionals]. / Stigmatisierungserleben bei Psoriasis ­ qualitative Analyse aus Sicht von Betroffenen, Angehörigen und Versorgern.

BACKGROUND: Numerous studies have shown that psoriasis is associated with severe losses in almost all dimensions of health-related quality of life. An important aspect is the stigmatization experience of those affected. OBJECTIVE: The aim of this study was to examine the perception of stigmatization from the perspective of patients, relatives and healthcare professionals using a qualitative approach. MATERIAL AND METHODS: Qualitative surveys in the form or focus groups and interviews with patients, relatives and healthcare providers were conducted. The data were analyzed by qualitative content analysis. RESULTS: The results show that stigmatization is perceived by all groups surveyed. It also became clear that self-stigmatization plays a special role. Affected persons, relatives and medical care providers described self-stigmatization as the greatest burden or restriction of affected persons in various areas of life, such as work, leisure and partnership. There were no crucial differences between sex or age groups. CONCLUSION: Possible knowledge deficits of non-affected persons and wrong assumptions of the affected persons about the attitudes of non-affected persons can be reduced, for example, in the context of encounters between affected persons and non-affected persons as well as between affected persons and medical care providers and thus reduce the public as well as the self-stigma.

The psychometric evaluation of the quality of life in short stature youth (QoLISSY) instrument for German children born small for gestational age.

PURPOSE: This study aimed to validate the disease-specific "quality of life in short stature youth (QoLISSY)-instrument" that assessesQuery the health-related quality of life (HrQoL) in German children and adolescents diagnosed as small for gestational age (SGA) in a patient and parent report. METHODS: The psychometric performance of the German version of the QoLISSY questionnaire was examined in terms of reliability and validity in 65 SGA families (17 child reports/64 parent reports) and compared to the psychometric performance of the original European QoLISSY dataset of over 200 children with growth hormone deficiency and idiopathic short stature (ISS). RESULTS: The analysis yielded psychometrically favorable results with excellent reliability and acceptable discriminant validity. The instrument's operating characteristics were comparable to the results of the original European QoLISSY data. In the parent- as well as child report, children with SGA had lower HrQoL scores than children with ISS. Convergent validity was demonstrated by significant correlations between the QoLISSY scales and the generic KIDSCREEN-10 Index. CONCLUSION: Psychometric testing suggests that QoLISSY is a promising instrument to assess the HrQoL of young German people with SGA. Both versions (parent- and child report) appear to detect differences between SGA and other conditions (e.g. ISS). QoLISSY can be used in clinical studies, health service research, as well as in practice in children with SGA and their parents. For a cross-cultural application of the instrument in SGA, the tool needs be validated in sufficiently large SGA samples within respective countries.

[Healthcare research in dermatology 2018 - power of the factual : What healthcare research is and who it serves]. / Versorgungsforschung in der Dermatologie 2018 ­ Kraft des Faktischen : Was Versorgungsforschung ist und wem sie dient.

In the dermatology practiced in Germany, healthcare research is an established and highly differentiated discipline. In many university dermatological institutions and private practices, studies are carried out on the processes of healthcare research for skin diseases. Commissioned by the German Society of Dermatology and the Professional Association of German Dermatologists, a significant number of the studies and projects are conducted by the German Center for Health Services Research in Dermatology (CVderm) as a nationwide reference center. Important projects include the implementation of patient registers and national care studies, research with secondary data and carrying out methodological studies for the further development of scientific questions. Important results are the national healthcare conferences for psoriasis, skin cancer, wounds and atopic dermatitis, the regional care networks as well as projects and cooperation with health insurance companies, local government and public institutions. In the interests of improved patient care, important factors of care are continuously improved. Future health services research in dermatology will be able to contribute even more efficiently for better care planning and management. Patient registers will facilitate the transfer of innovations into care and help to ensure that new treatment approaches can be implemented. Registers also support the optimization of therapy approaches, which can no longer be carried out on the basis of clinical studies alone, for example in the case of psoriasis, due to the large number of drugs available. In the era of digital medicine, healthcare research has an even more important function.

Hybrid crosses and the genetic basis of interspecific divergence in lifespan in Pristionchus nematodes.

Characterizing the genetic basis of among-species variation in lifespan is a major goal of evolutionary gerontology research, but the very feature that defines separate species - the inability to interbreed - makes achieving this goal impractical, if not impossible, for most taxa. Pristionchus nematodes provide an intriguing system for tackling this problem, as female lifespan varies among species that can be crossed to form viable (although infertile) hybrids. By conducting reciprocal crosses among three species - two dioecious (long-lived Pristionchus exspectatus and short-lived Pristionchus arcanus) and one androdioecious (short-lived Pristionchus pacificus) - we found that female lifespan was long for all hybrids, consistent with the hypothesis that the relatively short lifespans seen for P. pacificus hermaphrodites and P. arcanus females are caused by independent, recessive alleles that are masked in hybrid genomes. Cross-direction had a small effect on survivorship for crosses involving P. exspectatus, indicating that nuclear-mitochondrial interactions may also influence Pristionchus longevity. Our findings suggest that long lifespan in P. exspectatus reflects the realization of an ancestral potential for extended longevity in the P. pacificus species complex. This work demonstrates the utility of interspecific hybrids for ageing research and provides a foundation for future work on the genetic architecture of interspecific lifespan variation.

Validation of the Italian Quality of Life in Short Stature Youth (QoLISSY) questionnaire.

PURPOSE: The Quality of Life in Short Stature Youth (QoLISSY) questionnaire is a disease-specific instrument developed to assess health-related quality of life (HrQoL) in children with short stature. While the original instrument was simultaneously developed in five European countries, this study describes the results of the Italian QoLISSY translation, cultural adaptation, and validation. METHODS: Focus group discussions and a cognitive debriefing process with children (N = 12) diagnosed with growth hormone deficiency or idiopathic short stature and one parent each, as well as parents of younger children (N = 20) were conducted to examine the linguistic and content validity of the Italian version. Psychometric testing was performed using data from the subsequent field- and re-test (N = 32). RESULTS: The results of the qualitative testing of the Italian sample revealed comparability of content to data of the original five European countries. The following field- and re-test results were psychometrically satisfactory including good item and scale operating characteristics, sufficient evidence of reliability, and acceptable evidence of construct validity. CONCLUSION: In conclusion, the Italian QoLISSY HrQoL-dimensions are comparable to other European countries. The psychometric quality of the Italian QoLISSY version is satisfactory and the instrument is ready for use in Italian patients and their parents.