Anna Langenbruch

Willingness‐to‐pay and quality of life in patients with vitiligo

Background  Vitiligo is a chronic pigmentary disorder of the skin, affecting 1–2% of the general population. Although not life threatening, vitiligo may considerably influence patients’ health‐related quality of life (QoL) and psychological well‐being. Willingness‐to‐pay (WTP) is a construct reflecting disease burden and QoL reduction which has not yet been used in vitiligo.

Adherence in the Treatment of Psoriasis: A Systematic Review

Background: Medication adherence and compliance are essential for disease management and can significantly improve outcomes and quality of patient care. The literature suggests that up to 40% of patients do not use their medication as intended. Objective: To elucidate current knowledge on adherence/compliance in psoriasis. In particular, methods of adherence/compliance evaluation and influencing factors were to be identified. Methods: Systematic literature review based on a protocol-rooted search in online databases, followed by a structured critical appraisal and consecutive descriptive report. Results: Thirty-five original publications on adherence/compliance in psoriasis were identified, addressing the extent and quality of adherence/compliance in topical, systemic and UV treatments. Estimates of compliance varied considerably between 27 and 97%. Age, sex, psychosocial, disease-specific and treatment-specific factors were identified as predictors of adherence/compliance. Conclusion: A better understanding of the determinants of adherence can improve the outcomes of psoriasis treatment and lead to higher patient satisfaction and quality of care.

Nail involvement as a predictor of concomitant psoriatic arthritis in patients with psoriasis

Patients with psoriatic arthritis (PsA) suffer from increased burden of disease and impairments in quality of life. Early detection and treatment of PsA could contribute to the prevention of clinical and radiological progression.

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.

Quality of health care of atopic eczema in Germany: results of the national health care study AtopicHealth

The successful treatment of atopic eczema (AE) should result in the improvement of both physical symptoms and patient′s quality of life (QoL). This study was conducted using a sample of dermatologists throughout Germany. This is due to dermatologists being the main health care providers of AE.

Willingness to pay and quality of life in patients with rosacea

Background  Rosacea is a chronic inflammatory dermatosis affecting >2% of the population. Willingness to pay (WTP) is a well established method which reflects the individual burden of disease.

Psychological Burden in Adult Neurofibromatosis Type 1 Patients: Impact of Disease Visibility on Body Image

Aim: To evaluate the impact of disease visibility on psychological stress factors in neurofibromatosis type 1 (NF1) and to explore the body image of NF1 patients. Methods: 228 adult NF1 patients participated in this cross-sectional survey. The questionnaire assessed perceived disease visibility and patients’ body image. Outcome parameters were depression, distress and quality of life. Mediation models were performed to test if body experience mediated the effect of disease visibility on outcome parameters. Results: Adult NF1 patients had a negative body image, expressed by bodily insecurity/uneasiness and fewer feelings of attractiveness and self-confidence. Compared to the body image of patients with other disfiguring diseases, patients with NF1 felt less attractive, displayed less self-confidence (women: p < 0.001; men: p < 0.001) and were more insecure/uneasy and sexually dissatisfied with their bodies (men: p < 0.001; women: p ≤ 0.12, d = 0.28). The found effect of disease visibility on psychological stress was completely mediated by how patients experienced their bodies. Conclusions: Our study shed light on the importance of how NF1 patients experience and appraise their own bodies. We revealed that body image is an important link between disease visibility and psychological well-being. The body image of patients can be improved with psychotherapeutic interventions.

Quality of psoriasis care in Germany: results of the national health care study “PsoHealth3”

Two national surveys conducted in 2005 and 2007 indicated deficits in psoriasis care and induced the composition of the ‘‘National Goals for Health Care in Psoriasis 2010–2015’’. The aim of this work was to (1) evaluate the quality of care for patients with psoriasis in Germany, (2) compare this with prior psoriasis studies PsoHealth1 (2005) and PsoHealth2 (2007), and (3) review the implementation of national treatment goals. By means of a cross sectional study the following indicators of health care quality were collected: psoriasis severity (Psoriasis Area Severity Index (PASI) and proportion of PASI >20), quality of life (Dermatology Life Quality Index (DLQI) were corporated: proportion of DLQI >10), previous systemic treatment, inpatient treatment, and days absent from work due to psoriasis. Between January 2013 and March 2014, 1265 patients from 82 dermatological centres were included (mean age of 52 years). 9.2 % had a PASI >20 (2007: 11.6 %; 2005: 17.8 %). 21.3 % reported strong quality of life restrictions (DLQI >10) (2007: 28.2 %; 2005: 34.0 %). 59.5 % had received a systemic treatment at least once within the last 5 years (2007: 47.3 %; 2005: 32.9 %). 20.1 % were treated inpatient within the last 5 years (2007: 20.1 %; 2005: 26.9 %). The current data indicate a better health care situation for psoriasis in Germany. The implementation of the S3-Guideline and the ‘‘National Goals for Health Care in Psoriasis 2010–2015’’ could have been contributing factors.

The German National Program on Psoriasis Health Care 2005–2015: results and experiences

In 2005, the first national psoriasis survey in Germany revealed large deficits in health care particularly in patients with moderate to severe disease. The consecutive goal was to improve health care for psoriasis countrywide. For this, a large-scale national program was initiated starting with a comprehensive analysis of structures and processes of care for psoriasis. Patient burden, economic impact and barriers to care were systematically analyzed. In order to optimize routine care, a S3 guideline, a set of outcomes measures and treatment goals, were developed. Implementation was enforced by the German Psoriasis Networks (PsoNet) connecting the most dedicated dermatologists. The annual National Conference on Health Care in Psoriasis established in 2009 consented National Health Care Goals in Psoriasis 2010–2015 and defined a set of quality indicators, which are monitored on a regular basis. Currently 28 regional networks including more than 800 dermatologists are active. Between 2005 and 2014 7 out of 8 quality indicators have markedly improved, and regional disparities were resolved. e.g., mean PASI (Psoriasis Area Severity Index) dropped from 11.4 to 8.1 and DLQI (Dermatology Life Quality Index) from 8.6 to 5.9. A decade of experience indicates that a coordinated nationwide psoriasis program based on goal orientation can contribute to better quality of care and optimized outcomes.

Prevalence of Obesity in Patients with Psoriasis: Results of the National Study PsoHealth3.

Background: Psoriasis is frequently associated with obesity which possibly contributes to reduced treatment response. Objectives: Assessment of the prevalence of obesity in patients with psoriasis in Germany 2013/2014. Patients and Methods: The frequency of overweight and obesity was assessed by the body mass index (BMI) and evaluated according to the severity of psoriasis [Psoriasis Area and Severity Index (PASI)]. Results: This national, cross-sectional survey involved 83 dermatological practices and outpatient clinics, including 1,265 patients (mean age 52 years; 43.4% female). The BMI of patients with psoriasis in 2013/2014 was found to be 28.0 and therefore was significantly higher compared to that of patients with psoriasis in 2007 with a BMI of 26.9 as well as compared to the normal population in 2013 with an overall BMI of 25.9. Conclusions: The prevalence of obesity in patients with psoriasis is higher than in the normal population. The trend towards a higher BMI in patients with psoriasis continues over time.