Ines Schäfer

Prevalence of chronic pruritus in Germany: results of a cross-sectional study in a sample working population of 11,730.

Background: Pruritus is a frequent symptom in many diseases; its prevalence in German adults is unknown. Objective: Our purpose was to assess the prevalence, severity and health care of chronic pruritus in the German working population. Methods: A cross-sectional observational study was conducted in employees of 144 German companies. Pruritus-specific data were obtained by standardized questions. Results: 11,730 people (53.2% male, 16–70 years, mean = 43.7 years) were suitable for analysis. The point prevalence of chronic pruritus (at least 6 weeks prior to data collection) was 16.8%. The prevalence increased with age from 12.3% (16–30 years) to 20.3% (61–70 years). A quarter of the affected persons had suffered from pruritus for >5 years, 47% had never sought medical advice, and 94% had not undergone any treatment. Conclusions: Chronic pruritus is a prevalent symptom in the working age population. A high proportion of people affected are not medically treated.

The patient benefit index: a novel approach in patient-defined outcomes measurement for skin diseases

Evaluation of therapeutic benefits from the patient’s perspective is important in medical decision-making and reimbursement. This study aimed at developing and validating an instrument on patient-defined needs and benefits in dermatology. The questionnaire was developed according to international guidelines. The benefit assessment consists of two steps: before treatment, every patient defines his treatment needs according to a standardized list. After treatment, the patient rates the degree of benefits achieved. A “patient benefit index” (PBI) is calculated by averaging the preference-weighed results of all items. The PBI questionnaire was validated in a sample of 500 patients with ten skin diseases and in a treatment study on 906 patients with acne. The patients defined a broad spectrum of needs and treatment benefits, indicating disease-specific patterns. The PBI showed good feasibility, reliability (Cronbach’s alpha >0.91) and construct validity, high responsiveness, and discrimination between subgroups. The PBI permits valid evaluation of patient-relevant benefits in dermatological treatment.

Concordance of the Psoriasis Area and Severity Index (PASI) and patient-reported outcomes in psoriasis treatment

A prospective observational study was conducted to analyze to what extent the Psoriasis Area and Severity Index (PASI) is correlated to patient reported outcomes (PRO). Data were collected on 93 outpatients with psoriasis prior to (t1) and after therapy (t2). A higher PASI score was associated with impaired Quality of Life (DLQI), however associations were only weak (R = 0.24 on t1 and R = 0.36 on t2). The average improvement in PASI score was correlated moderately highly with the change of DLQI (R = 0.50) as well as with the PBI (R = 0.45). The threshold values PASI-50 and PASI-75 were likewise positively associated with PRO, but they only incompletely reflect them: about half of the patients with PASI-50 did not see their expectations met (46.9%) or were not satisfied with the condition of the skin after treatment (56.3%). A quarter of these patients experienced no benefits from the therapy. Of the patients with PASI-75, 15.4% were not satisfied with the condition of their skin. In contrast, 36% of patients who did not attain PASI-50 specified a high level of treatment satisfaction. PASI and PRO are associated but based on different concepts. In addition to clinicial severity, patient-defined benefits should be implemented in the evaluation of psoriasis care.

Cost-of-illness of leg ulcers in the community.

Leg ulcer management is complex, time‐consuming and of high socio‐economic importance. Data on cost‐of‐illness in leg ulcer care are sparse. The objective of this study was to evaluate the cost‐of‐illness in leg ulcer treatment in the metropolitan area of Hamburg. About 147 institutions involved in wound care participated in a cross‐sectional study. Patients consecutively recruited underwent a standardised interview and clinical examination. Main economic outcomes were direct, indirect and intangible costs from a societal perspective. Five hundred and two patients with a mean age of 71 years and mean wound duration of 9 years were enrolled. Annual total costs summed up to a mean of 9060€ /patient/year (8288€ direct, 772€ indirect costs). Direct costs carried by statutory health insurances amounted to 7680€ , patients themselves paid on average 607€. Leg ulcer is associated with high costs for health insurances, patients and the society. Exploratory predictor analyses suggest that early, interprofessional disease‐management could lower treatment costs.

Evaluation of Quality of Care and Guideline-Compliant Treatment in Psoriasis

Background: To date, no standardised indicators for quality of care in psoriasis have been published. Aims: Development and testing of evidence-based indicators of quality of care and guideline compliance in the treatment of psoriasis. Methods: Indicators of process and outcome quality were extracted and evaluated in a Delphi process according to international standards. The primary reference was the S3 German guideline for psoriasis treatment. The indicators were validated with data from two nationwide studies on psoriasis care involving 1,511 and 2,009 patients. Results: Eight quality indicators were defined: mean PASI, mean quality of life (Dermatology Life Quality Index; DLQI), proportion of patients with PASI >20, with DLQI >10, with previous systemic treatment, with PASI >20 and systemic treatment, with inpatient treatment, and number of work days lost. All indicators proved suitable for application, and were sensitive to change. Conclusions: Guideline-based indicators of quality of care are useful in the analysis of health care and the implementation of treatment guidelines in psoriasis.

Epidemiologie der Psoriasis in Deutschland – Auswertung von Sekundärdaten einer gesetzlichen Krankenversicherung

BACKGROUND In Germany, population-based data on the epidemiology of psoriasis are still rare. This study aims to assess the prevalence of psoriasis in the total population as well as for subgroups relevant to health care. As further epidemiological parameters the severity and regional distribution of psoriasis were analysed. METHODS A secondary analysis of data collected routinely for the members of a nationwide statutory health insurance company was conducted. Prevalences were calculated for a closed cohort of continuously insured persons in 2005. Defined criteria for the existence of psoriasis were at least one diagnoses of psoriasis (ICD-10) relating to ambulatory or hospital treatment or disability. RESULTS 33,981 of the 1,344,071 continuously insured persons in 2005 were diagnosed with psoriasis, thus the one-year-prevalence in this cohort was 2.53%. Up to the age of 80 years the prevalence rate was increasing with increasing age and highest for the age groups from 50 to 79 years (range: 3.99-4.18%). Insured persons up to 20 years had a prevalence of 0.73%. Regional differences showed up after stratification for broad categories (1 digit) of ZIP codes: Lowest prevalence rates were seen in the south (2.17%) and highest (2.78%) in the north and western regions of Germany. CONCLUSIONS If the prevalence rate of 2.5% assessed in this study is applied to the total resident population, 2 million people are treated because of psoriasis in Germany. Routine data from health insurance companies are a relevant and suitable data source to assess the prevalence of chronic diseases (under medical treatment) in the population.

Nail psoriasis as a severity indicator: results from the PsoReal study

Background: Although nail psoriasis affects a substantial proportion of psoriasis patients and causes significant psychologic distress, few epidemiologic data characterizing patients with nail involvement are available. The aim of this research was to elucidate differences between patients with nail psoriasis and those without any nail involvement, taking quality indicators of health care from the patient’s perspective into account. Methods: In total, 2449 patient members of the Deutscher Psoriasis Bund, the largest patient organization for psoriasis in Germany, were interviewed in this nationwide, noninterventional, cross-sectional study. Patients with nail psoriasis were compared with patients without any nail involvement with regard to gender, age, disease duration, affected body surface area, health-related quality of life (Dermatology Life Quality Index [DLQI] ED-5D), patient-defined treatment benefit, amount of inpatient treatments, disease duration, and numbers of work days lost. Results: Data from 2449 patients with psoriasis were analyzed. Overall, 44.8% (1078) of patients were female, mean age was 57.0 ± 11.7 years, and 72.8% had nail involvement and showed higher values for affected body surface area than those without nail involvement (8.3% versus 5.6%, respectively; P < 0.004). Health-related quality of life was significantly lower in patients with nail psoriasis (DLQI 7.2 versus 5.3; ED-5D 60.1 versus 67.3), who had more days off work (9.8 versus 3.3). Conclusion: Nail involvement is an important symptom of psoriasis and is associated with greater disease severity and quality of life impairment. Accordingly, management of psoriasis should include a special focus on nail involvement.

Health Services Research in Psoriasis – The German Approach

insurance funds and other parties involved in the health care sector have realized the need to obtain specific data on health services provision. The task of health services research is to investigate the reality of health services provision under everyday conditions (German Medical Association 2005). Health services research has established itself as the third pillar of health research – along with biomedical basic research and clinical research. In order to provide a picture of the state of health services provision in Germany, it is necessary to obtain sufficient upto-date national data on the German health care system. Though the development of effective health services research is now regarded as essential, our knowledge of the state of health services provision in Germany is, in some cases, still only rudimentary, even in the case of some of the most common diseases. This is especially true for skin diseases.

Clinical Features and Treatment Outcomes of Vitiligo from the Patients’ Perspective: Results of a National Survey in Germany

Background: Vitiligo causes substantial disease burden and patient needs still remain underestimated. Objective: To assess the clinical features, treatment outcomes and satisfaction in patients with vitiligo. Methods: A nationwide, cross-sectional German postal survey was conducted. Clinical features and treatment outcomes of vitiligo (affected body surface, comorbidities, treatments applied, patient benefit index [PBI]) were evaluated using a standardized patient questionnaire. Results: 1,023 patients (71.4% women, mean age 44.4 years) completed the questionnaire. The average onset of disease was at 24.1 years, and the mean disease duration was 20.3 years. The mean number of body sites affected was 6.9, and the mean affected body surface area was 14.9%. On average, 3.7 therapies had been applied previously, with a total PBI of 1.03 ± 1.12. Only 38.7% experienced a PBI >1, which indicates a minimal patient benefit. Conclusions: Most therapeutic options are considered to be of low patient benefit. There is a need for more beneficial treatments and improved care in patients with vitiligo.

Assessing the Value of Supportive Skin Care: Development and Validation of an Instrument for Evaluating Patient-Relevant Benefit

Background: Supportive skin care for irritated and inflamed skin is one of the most important measures in the prevention and treatment of eczema and sensitive skin. Objectives: To develop and validate an instrument for the evaluation of patient-relevant benefit in the supportive care of irritated skin with nonpharmacological topical agents. Methods: Patient-defined treatment objectives and benefits of supportive skin care were determined in an open survey of patients with irritated skin. A pilot questionnaire was constructed according to the Patient Benefit Index (PBI). The questionnaire was tested for feasibility and validity in 1,886 patients with various irritated skin conditions. Results: From a total of 90 characteristics of basic therapy benefit, a 23-item questionnaire was constructed. This questionnaire (‘PBI-k’) proved to be feasible, reliable and was associated with a high level of patient acceptance in the surveillance field. The questionnaire showed good internal consistency, distribution characteristics and convergent validity with patient satisfaction. Conclusion: The PBI-k is the first specific instrument developed for the evaluation of patient-defined benefit in supportive skin care with nonpharmacological topical agents. Feasibility and psychometric properties make this questionnaire suitable for application in studies involving patients with irritated, sensitive skin.