Vitiligo causes substantial disease burden as reflected by QoL impairment and high WTP, especially in women. These results should draw the attention of physicians to this disease, as appropriate education and treatment are likely to improve the QoL of patients with vitiligo and may support patients' compliance and empowerment.
Atopic dermatitis (AD) is a frequent and burdensome disease. The objectives of this study were (1) to assess the willingness to pay (WTP) and quality of life (Qol) in AD patients and (2) to compare the results with data on other chronic skin diseases. To collect data, a non-interventional, cross-sectional nationwide postal survey on adult patients with clinically diagnosed AD was performed; socio-demographic data, clinical features/symptoms, WTP and QoL were recorded. WTP was assessed in three different approaches, including relative and absolute figures. Data from n = 384 AD patients (mean age 42.0, range 18-92, 69.8 % female) were analyzed. WTP for complete healing was on median 1,000 (average 11,884) and exceeded WTP in rosacea (median 500) but not in vitiligo (median 3,000). Mean Dermatology Life Quality Index (DLQI) was 8.5 (vitiligo 7.0; psoriasis 6.7; rosacea 4.3) and correlated with pruritus, xerosis and disturbed sleep. WTP and DLQI correlated only marginally (r s = 0.134, p = 0.01). In conclusion, AD patients show high WTP and markedly reduced QoL compared to other chronic skin diseases.
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.
Rosacea patients show a moderate WTP and average QoL reduction is mild. WTP proved to be a valid tool to assess patients' burden of disease. Patient education and the development of effective treatment options might still improve patients' satisfaction.
This study provides first data on the health care of adults with AE in Germany at a national level and reveals the need for a more effective care. Whereas most patients consider their treatment-related burden as low, the daily burden of the disease seems to be high: one third reports sleeplessness due to itching which indicates insufficient therapeutic regimes in these cases. A better implementation of the German national guideline for AE and a systematic analysis of the difficulties causing its limited effects is needed.
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.
Results indicate that patients who declare a DLQI item to be not relevant have a higher disease-related burden than those who do not feel affected by their psoriasis in the same aspect of life. If aspects of life are considered to be not relevant due to high disease burden, this should be reflected by a HRQoL instrument.
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.
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