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1.
J Eur Acad Dermatol Venereol ; 38(9): 1809-1817, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-38523469

RESUMO

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.


Assuntos
Efeitos Psicossociais da Doença , Ictiose , Qualidade de Vida , Humanos , Feminino , Masculino , Ictiose/economia , Ictiose/terapia , Adulto , Adulto Jovem , Adolescente , Pessoa de Meia-Idade , Inquéritos e Questionários , Criança , Pré-Escolar , Prurido/terapia , Prurido/economia , Prurido/etiologia , Fatores de Tempo , Alemanha , Idoso
2.
Water Res ; 247: 120746, 2023 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-37984031

RESUMO

The discharge of pathogens into urban recreational water bodies during combined sewer overflows (CSOs) pose a potential threat for public health which may increase in the future due to climate change. Improved methods are needed for predicting the impact of these effects on the microbiological urban river water quality and infection risks during recreational use. The aim of this study was to develop a novel probabilistic-deterministic modelling approach for this purpose building on physically plausible generated future rainfall time series. The approach consists of disaggregation and validation of daily precipitation time series from 21 regional climate models for a reference period (1971-2000, C20), a near-term future period (2021-2050, NTF) and a long-term future period (2071-2100, LTF) into sub-daily scale, and predicting the concentrations of enterococci and Giardia and Cryptosporidium, and infection risks during recreational use in the river downstream of the sewage emissions from CSOs. The approach was tested for an urban river catchment in Austria which is used for recreational activities (i.e. swimming, playing, wading, hand-to-mouth contact). According to a worst-case scenario (i.e. children bathing in the river), the 95th percentile infection risks for Giardia and Cryptosporidium range from 0.08 % in winter to 8 % per person and exposure event in summer for C20. The infection risk increase in the future is up to 0.8 log10 for individual scenarios. The results imply that measures to prevent CSOs may be needed to ensure sustainable water safety. The approach is promising for predicting the effect of climate change on urban water safety requirements and for supporting the selection of sustainable mitigation measures. Future studies should focus on reducing the uncertainty of the predictions at local scale.


Assuntos
Criptosporidiose , Cryptosporidium , Giardíase , Criança , Humanos , Esgotos , Mudança Climática , Qualidade da Água , Giardia , Monitoramento Ambiental/métodos
5.
Dermatologie (Heidelb) ; 73(8): 627-633, 2022 Aug.
Artigo em Alemão | MEDLINE | ID: mdl-35482046

RESUMO

BACKGROUND: Demographic changes are causing a rapid increase in the number of people over 65 years of age. This is associated with an increase in the number of multimorbid patients in need of care. Nationally as well as internationally, there is little information on the treatment of psoriasis patients in the nursing home setting and on the question of how this is influenced by entry into a nursing home. OBJECTIVE: The aim was to discuss the results of previous routine data analyses on the treatment of psoriasis patients in nursing homes with medical providers (dermatologists, general practitioners, nursing service managers, and nursing staff) on the basis of interviews and focus groups, to identify difficulties in the treatment and finally to derive recommendations for action regarding sustainable gerontodermatological treatment. MATERIALS AND METHODS: Qualitative guideline-based interviews and focus groups with dermatologists (n = 5), general practitioners (GPs, n = 7), nurses (n = 7), and care managers (n = 2) were conducted. The data were evaluated by content analysis. RESULTS: The analyses resulted in 344 statements, which could be categorized into 14 main topics. The results show that there is a need for improvement in the quality of care for people with skin diseases, especially psoriasis, in nursing homes. This is evident at both the medical and nursing levels. According to the providers (N = 21), this can be addressed in particular through increased remote consultations (telemedicine), dermatological training for GPs and nurses, and closer cooperation between the individual disciplines. CONCLUSION: Remote consultations, but also a specific guideline on the "skin of the ageing person" can be useful to improve the dermatological care situation in nursing homes and thus increase the well-being of those affected.


Assuntos
Clínicos Gerais , Psoríase , Idoso , Grupos Focais , Humanos , Casas de Saúde , Psoríase/terapia , Instituições de Cuidados Especializados de Enfermagem
6.
J Eur Acad Dermatol Venereol ; 36(4): 499-525, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-34817889

RESUMO

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.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Dermatopatias , Adolescente , Criança , Consenso , Humanos , Psicometria , Inquéritos e Questionários
8.
J Eur Acad Dermatol Venereol ; 35(11): 2241-2249, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34273904

RESUMO

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).


Assuntos
Efeitos Psicossociais da Doença , Psoríase , Anticorpos Monoclonais Humanizados , Método Duplo-Cego , Humanos , Satisfação do Paciente , Satisfação Pessoal , Estudos Prospectivos , Psoríase/tratamento farmacológico , Qualidade de Vida , Índice de Gravidade de Doença , Resultado do Tratamento
9.
J Eur Acad Dermatol Venereol ; 35(11): 2166-2184, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-33988873

RESUMO

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.


Assuntos
Hidradenite Supurativa , Psoríase , Doença Crônica , Humanos , Estudos Longitudinais , Psoríase/epidemiologia , Fatores de Risco
10.
J Eur Acad Dermatol Venereol ; 35(7): 1553-1561, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-33630357

RESUMO

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.


Assuntos
Psoríase , Qualidade de Vida , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prurido , Psoríase/complicações , Índice de Gravidade de Doença , Sexualidade , Estereotipagem
11.
J Eur Acad Dermatol Venereol ; 35(7): 1493-1504, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-33428316

RESUMO

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.


Assuntos
Qualidade de Vida , Dermatopatias , Humanos , Saúde Mental , Autoimagem , Estigma Social , Estereotipagem
12.
Actas Dermosifiliogr (Engl Ed) ; 112(1): 44-51, 2021 Jan.
Artigo em Inglês, Espanhol | MEDLINE | ID: mdl-33137321

RESUMO

BACKGROUND AND AIMS: The Wound-QoL is a validated and feasible questionnaire for measuring disease-specific health-related quality of life in chronic wounds, originally developed for use in German. The objective of this study was to translate the Wound-QoL for use in clinical care and in clinical trials in Spain and to validate this version. MATERIALS AND METHODS: Two independent fourth- and back translations of the Wound-QoL from the original German version were conducted, followed by an expert consensus of the resulting versions. After refinement, the final tool was piloted in N=10 patients and then used in the validation study. RESULTS: A total of 115 patients were recruited. Mean age was 69.5 (SD 14.5) years, 60.0% were female. The Spanish version of Wound-QoL showed high internal consistency (Cronbach's alpha>0.8 in all scales). Factor analysis resulted in the same scales as the original version. There were satisfactory distribution characteristics of the global score and the subscales. Construct validity and convergent validity with other outcomes (generic QoL, healing rate) were satisfactory. The vast majority of patients considered the Wound-QoL a simple and feasible tool. Mean time needed for completing the questionnaire was 5minutes. Overall, 99.1% of the participants found it easy to understand the questions and 94.7% stated that the questionnaire suits the personal situation. CONCLUSIONS: The Spanish version of the Wound-QoL shows good validity in clinical practice. It can be recommended for use in clinical routine and trials.


Assuntos
Qualidade de Vida , Traduções , Idoso , Análise Fatorial , Feminino , Humanos , Espanha , Inquéritos e Questionários
13.
J Eur Acad Dermatol Venereol ; 34(12): 2846-2855, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-32277524

RESUMO

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.


Assuntos
Psoríase , Dermatopatias , Adulto , Humanos , Masculino , Percepção , Estereotipagem , Inquéritos e Questionários
14.
J Eur Acad Dermatol Venereol ; 34(5): 1010-1018, 2020 May.
Artigo em Inglês | MEDLINE | ID: mdl-31715033

RESUMO

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.


Assuntos
Efeitos Psicossociais da Doença , Psoríase , Adolescente , Adulto , Estudos Transversais , Atenção à Saúde , Alemanha , Humanos , Psoríase/terapia , Qualidade de Vida , Índice de Gravidade de Doença , Inquéritos e Questionários
15.
J Eur Acad Dermatol Venereol ; 34(1): 142-152, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31465587

RESUMO

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.


Assuntos
Dermatite Atópica/psicologia , Dermatite Atópica/terapia , Objetivos , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Avaliação de Resultados em Cuidados de Saúde , Qualidade de Vida , Inquéritos e Questionários , Adulto Jovem
16.
J Eur Acad Dermatol Venereol ; 33(11): 2029-2038, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31177601

RESUMO

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.


Assuntos
Dermatopatias , Estereotipagem , Doença Crônica , Humanos , Dermatopatias/patologia
17.
J Eur Acad Dermatol Venereol ; 33(11): 2202-2208, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31087405

RESUMO

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.


Assuntos
Dermatopatias , Estereotipagem , Organização Mundial da Saúde , Doença Crônica , Alemanha , Humanos , Desenvolvimento de Programas , Psoríase
18.
Hautarzt ; 70(7): 520-526, 2019 Jul.
Artigo em Alemão | MEDLINE | ID: mdl-31134287

RESUMO

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.


Assuntos
Família/psicologia , Pessoal de Saúde/psicologia , Psoríase/psicologia , Qualidade de Vida/psicologia , Estigma Social , Estereotipagem , Atitude , Grupos Focais , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Entrevistas como Assunto , Percepção , Pesquisa Qualitativa
19.
Br J Dermatol ; 181(4): 743-748, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-30802934

RESUMO

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.


Assuntos
Dermatite Seborreica/epidemiologia , Adolescente , Adulto , Fatores Etários , Idoso , Estudos de Coortes , Comorbidade , Dermatite Seborreica/diagnóstico , Feminino , Alemanha/epidemiologia , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Fatores de Risco , Fatores Sexuais , Adulto Jovem
20.
J Eur Acad Dermatol Venereol ; 33(4): 700-708, 2019 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-30388318

RESUMO

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.


Assuntos
Fármacos Dermatológicos/uso terapêutico , Necessidades e Demandas de Serviços de Saúde , Planejamento de Assistência ao Paciente , Preferência do Paciente , Psoríase/tratamento farmacológico , Adulto , Fatores Etários , Depressão/etiologia , Fármacos Dermatológicos/efeitos adversos , Feminino , Alemanha , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Psoríase/psicologia , Sistema de Registros , Fatores Sexuais , Sono , Participação Social , Suíça
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