Dermatology Life Quality Index (DLQI) in patients with atopic dermatitis: Are 'not relevant' responses relevant?

INTRODUCTION: According to the DLQI user manual, the patients´ answers 'not relevant' (NR) and 'not at all' (affected in this aspect of life by the skin problem) are treated equally and interpreted as no impairment in health related quality of life (HRQoL). The aim of this study was to gain more insights about 'not relevant' responders with atopic dermatitis (AD). METHODS: 3,353 patients with AD, recruited from dermatological offices and a patient organisation, were surveyed in three cross-sectional studies. Disease severity (SCORAD) and subjective health status (EQ VAS) were compared for each DLQI item between patients who answered 'not relevant' and all others according to their response category. Different DLQI scoring versions were analysed. RESULTS: Those who stated 'not relevant' in terms of HRQoL limitations in the DLQI domains sports, work/study and sexual relationships were comparable in AD severity and health status to those who felt that their HRQoL was 'a little affected'. Alternative DLQI scoring versions, in which 'not relevant' responses (NRRs) were interpreted as 'a little affected', correlated slightly higher with the SCORAD and EQ VAS than the original DLQI. CONCLUSION: Patients with AD who rate certain life domains as 'not relevant' in the DLQI are most similar in their disease burden to patients who feel a little affected in these areas of life. This suggests that some HRQoL limitations are underestimated by the traditional DLQI scoring. However, alternative scoring solutions have not shown substantially higher correlations with other disease burden criteria compared to the original. Therefore, the gain in validity by alternative scoring versions is small.

PsoBarrier EU study: a Multicentre, Cross-sectional Survey Investigating the Quality of Psoriasis Care in Four European Countries.

Enhanced treatment options for psoriasis and growing use of guidelines increased the potential to better quality of psoriasis care in Europe. The aim of the PsoBarrier EU study is to compare the quality and processes of psoriasis care in four European countries with different healthcare systems, based on validated quality indicators. This cross-sectional survey was conducted in dermatology centres in Denmark, Germany, Poland and Spain on 1,304 patients, using standardized patient and physician questionnaires. Measured by quality of psoriasis care indicators, patients in Poland had the most critical outcomes, such as the highest disease severity (Psoriasis Area and Severity Index; PASI) and lowest health-related quality of life (Dermatology Life Quality Index; DLQI). This indicates differences in psoriasis care, with Polish participants experiencing more severe psoriasis and its consequences. Differences in the healthcare systems, which create barriers to accessing treatments, could explain variations in quality of care.

Development of a Specific Variant of Patient Benefit Index (PBI) Assessing Patient Needs, Goals and Benefits in Rosacea Treatment.

Introduction: Evaluation of patient-reported outcomes including health-related quality of life (HRQoL) and perceived benefits from treatment has become a fundamental component of medical decision-making. Standardized evaluation of treatment benefits in rosacea based on patient preferences is still lacking. Objective: Development and validation of an instrument for recording patient-defined benefits in rosacea therapy based on the Patient Benefit Index (PBI) methodology. Patients and Methods: In an open survey of n = 50 patients, potential benefits of therapy from the patient's perspective were examined. The generated item pool was combined with pre-existing PBI items for other skin conditions and reviewed by an expert panel of dermatologists, psychologists and patients. Items were condensed to n = 25 and converted into a Likert-scaled questionnaire. The validity and feasibility of the resulting Patient Benefit Index for rosacea (PBI-RO) were tested on individuals with rosacea recruited from a German rosacea patient organization. Results: N = 446 patients with rosacea completed the PBI-RO. The internal consistencies measured by Cronbach's alpha were high (Patient Needs Questionnaire [PNQ] 0.94). Mean PBI-RO was 1.9 ± 1.2 (scale from 0 = no benefit to 4 = maximum benefit), 23.5% of the patients experienced a PBI-RO < 1 (no clinically relevant benefit). The PBI-RO correlated with HRQoL, health state, current extent of rosacea lesions and treatment satisfaction. The highest correlation was found between PBI-RO and satisfaction with previous treatment (r = -0.59, p < 0.001); correlation with the extent of rosacea lesions was low (r = 0.16, p < 0.001). Conclusion: The PBI-RO shows satisfying internal consistency and construct validity. It offers the option of a patient-weighted evaluation of the therapeutic benefit of rosacea therapy and may add to more stringent goal orientation in therapy.

Development and Validation Features of the Patient Benefit Index for the Treatment of Allergic Rhinoconjunctivitis with Allergen Immunotherapy.

Purpose: Allergic rhinoconjunctivitis (ARC) is one of the most common diseases worldwide. Allergen immunotherapy (AIT) is the only causal treatment available so far. Due to health policy provisions, the assessment of treatment benefit from the patient's perspective is of high relevance. To date, no instrument for assessing treatment needs and benefits of patients with ARC who receive AIT has been published. The aim of the study was to validate an instrument to assess the patient-relevant treatment benefit of patients with ARC who receive AIT. Methods: We developed the Patient Benefit Index questionnaire for AIT (PBI-AIT), consisting of 33 items. Longitudinal data of patients with ARC were used to test feasibility, reliability and validity. The PBI was compared between the beginning of the study (t1) and the end of the study (t5). Results: N = 279 patients with AIT completed the PBI-AIT at t1, n = 333 at t5; n = 226 at both timepoints. Mean number of missing values per patient was 0.7 in the Patient Needs Questionnaire (PNQ) at t1 and 1.2 in the Patient Benefit Questionnaire (PBQ) at t5. The internal consistencies measured by Cronbach's alpha were 0.98 (PNQ) and 0.99 (PBQ). The mean PBI of the patients with AIT was significantly lower at t1 and improved at t5. The PBI-AIT correlated with all tested external criteria at t5. The correlation between PBI-AIT and satisfaction with previous treatment (r = -0.57, p < 0.001) was higher than the correlation between PBI-AIT and current disease severity (r = -0.26, p < 0.001). Conclusion: The results indicate feasibility, reliability, convergent and discriminant validity as well as sensitivity to change of the PBI-AIT.

Adherence to Guideline-Oriented Preventive Measures in Patients with Atopic Dermatitis in Germany.

BACKGROUND: Atopic dermatitis (AD) is a chronic inflammatory skin disease that is often associated with comorbidities and quality of life losses. The implementation of evidence-based preventive measures strengthens patient participation and offers the potential to improve quality of care for AD. OBJECTIVES: To assess adherence to guideline-oriented preventive measures in adult patients with AD in dermatological routine care in Germany. METHODS: The self-responsible application of preventive measures, clinical features, pruritus, disease severity, and duration of disease as well as skin disease-related quality of life were assessed in two independent cross-sectional studies in 2010 and 2017-2019. RESULTS: Between 2017 and 2019, 706 patients (55.8% female, mean age 41 years) were recruited in a comparable way to the survey in 2010 with 1,678 patients (60.5% female, mean age 38 years). Regular skin care was applied by 99.5% (2010: 94.9%), 90.9% avoided skin irritants (2010: 84.6%), and 80.2% (2010: 61.6%) did not smoke at home. Relaxation techniques were applied by 44.4% (2010: 29.9%). Advice on self-help measures was taken by 36.4% (2010: 27.1%) and 29.2% (2010: 15.4%) attended AD patient education courses. All six preventive measures categorized as obligatory were performed by 13.9% of the patients (2010: 6.7%). Predictors for the number of obligatory preventive measures applied were a high level of education, a longer disease duration, and a lower quality of life. CONCLUSIONS: Although the self-reported use of evidence-based preventive measures in the 2017-2019 study appears to be more frequent than in 2010, important measures are still insufficiently established. Hence, more implementation, including education, is needed to increase the use of guideline-oriented preventive measures.

Sex-related impairment and patient needs/benefits in anogenital psoriasis: Difficult-to-communicate topics and their impact on patient-centred care.

Genital psoriasis affects 2-5% of psoriasis patients; generalised plaque or intertriginous psoriasis also affects the genital area in 29-40% of cases. Anogenital psoriasis has been associated with significant quality of life impairments, but little is known about specific patient needs/treatment goals. This study aimed to examine the overall and sex-related disease burden, patient needs and treatment benefits in patients with anogenital psoriasis, compared to patients with psoriasis not affecting the anal/genital areas. Within the cross-sectional nationwide survey, 2,009 participants were consecutively recruited in 157 randomly assigned German dermatology practices and clinics, according to the following inclusion criteria aged 18 years or over; diagnosis of psoriasis vulgaris; ability to answer the questionnaires; and written informed consent. Based on a high-resolution grid on the topical distribution of psoriasis, two groups were formed: anogenital psoriasis (n = 622) and comparison group (n = 1,303). Clinical severity was assessed by the Psoriasis Area and Severity Index (PASI). Patients completed the EuroQoL visual analogue scale (EQ VAS), the Dermatology Life Quality Index (DLQI), and the Patient Benefit Index (PBI). Patients with anogenital psoriasis had higher PASI (13.0±10.6 vs. 8.9±7.6, P < 0.001) and more DLQI impairments (8.9±6.9 vs. 7.0±6.2, P = 0.002) than controls. At the item-level, they also reported more sex-related DLQI impairments (DLQI-i9: 0.5±0.8 vs. 0.3±0.7, P < 0.001) and treatment needs (PBI-i17: 2.2±1.8 vs. 1.9±1.8, P = 0.001). A great percentage of missing/not-relevant responses was found for sex-related items (23.3-41.9%). These results suggest that the assessment of sex-related impairments and treatment needs should be prioritised in patients with anogenital psoriasis. Questionnaires may be used as a less uncomfortable way for patients to discuss their genital lesions and sexual function during healthcare visits. However, the great percentage of missing/not-relevant responses to sex-related items calls for in-depth assessments and effective patient-physician communication regarding these sensitive topics.

Characteristics and determinants of patient burden and needs in the treatment of chronic spontaneous urticaria.

BACKGROUND: Treatment of chronic spontaneous urticaria (CSU) is founded on evidence-based guidelines. However, specific patient needs and benefits of therapy have not been outlined at the guideline level. OBJECTIVES: The aim of this study was to characterise the specific needs and treatment goals in chronic spontaneous urticaria from the patient's perspective. MATERIALS AND METHODS: This cross-sectional study was conducted in four German outpatient dermatology clinics. Patient needs and potential therapy goals were determined with the validated Patient Needs Questionnaire (PNQ) using a specific version for chronic urticaria. Further instruments to characterise the link between patient needs and disease burden were disease-specific (CU-Q2oL), skin-generic (DLQI) and health-generic (EQ VAS) scales. RESULTS: Data from 103 patients were analysed (age: 43.92 ± 14.96 years; 71.4% female). Among the most important therapeutic goals were the absence of visible skin lesions (92.3% important/very important), to be free of itching (91.5%) and the desire to be healed of all skin defects (89.5%). All 26 items were found to be quite important/very important by at least 30% of the respondents. Specific profiles of patient needs were found to be related to sex and disease duration. CONCLUSION: Innovative drugs and patient-centred individualised treatment may increase overall benefits. Regardless of the treatment chosen, shared decision making in the management of the disease should be a goal.

Disease burden and treatment needs of patients with psoriasis in sexually-sensitive and visible body areas: results from a large-scale survey in routine care.

Psoriasis may cause considerable disease burden. The involvement of sexually-sensitive/visible body areas has been associated with decreased quality of life (QoL), more depressive symptoms and stigmatisation experiences. To characterise the topical distribution of psoriasis in sexually-sensitive and visible areas, to examine its impact on QoL and to determine which specific patient needs should be addressed in routine care. Patients with psoriasis vulgaris were recruited within a cross-sectional nationwide survey, involving 157 randomly assigned German dermatology practices/clinics. The main outcome measures were the EuroQoL visual analogue scale (EQ VAS), the Dermatology Life Quality Index (DLQI), the Patient Needs Questionnaire (PNQ) and a grid scheme for topical distribution of psoriasis. The sample included 2,009 patients (43.7% female; 21.8% ≥ 65 years; 64.2% with lesions in sexually-sensitive areas and 86.2% with lesions in visible areas). Patients with concomitant involvement of sexually-sensitive and visible areas presented increased DLQI impairments relative to patients with no involvement of sexually-sensitive or visible areas (F(3, 1723) = 4.091, p = 0.007). Significant differences were also found for patient needs dimensions (PNQ) depending on the body areas affected (F(15, 4602) = 2.936, p < 0.001). Significant effects of gender and age group were also observed. Increased disease severity, lesions in both sexually-sensitive/visible or only visible areas, and increased QoL impairment were associated with specific patient needs. These results highlight the need for proactive evaluation of difficult-to-communicate impairments and the requirements for patient-centred routine care.

Benefits of a membership in a psoriasis patient organisation: a quasi-experimental longitudinal study.

BACKGROUND AND OBJECTIVES: Patient organisations play an important role in supporting patients with chronic diseases and allow information transfer beyond professional care structures. Until now, only few studies have investigated the benefits of a dermatological patient organisation. In this study, potential benefits of joining the German Psoriasis Association (Deutscher Psoriasis Bund e. V., DPB) were surveyed. METHODS: The quasi-experimental longitudinal design included four groups of individuals suffering from psoriasis: those (1) with DPB membership of 5 years, (2) with voluntary new membership, (3) with randomly awarded membership, and (4) without membership. Participants were interviewed two times in 12 months, about quality of life, depression, participation in patient education classes, health status, and treatment benefits. RESULTS: 295 individuals participated (mean age 54 years; 50.3% females). At the outset of the study, participants with voluntary new membership rated their health status worse and showed higher depression scores than those with awarded membership. The proportion of participants who joined patient education classes only increased in the group of long-term members. Health status worsened in the group of non-members, and it improved in the group of those with awarded and voluntary new membership. Treatment benefit only increased in the voluntary new members group. CONCLUSIONS: DPB membership seems to be associated with some relief from psoriasis-related strains, particularly in the group of those who joined voluntarily. This could be due to the fact that individuals who become members out of their own volition are more likely to seek information and, therefore, benefit from their active engagement.

Krankheitsverlauf, medizinische Versorgung und Lebensqualität von Patienten mit kongenitalen melanozytären Nävi - Auswertung des deutschsprachigen KMN-Registers.

HINTERGRUND: Kongenitale melanozytäre Nävi (KMN) bedeuten für Patienten und Familien eine psychologische Belastung und bergen zudem medizinische Risiken. Das 2005 gegründete deutschsprachige KMN-Register wurde nun einer Zwischenauswertung bezüglich des Krankheitsverlaufes, der medizinischen Versorgung und der Lebensqualität unterzogen. PATIENTEN UND METHODIK: 100 Patienten, die sich in den Jahren 2005 bis 2012 mit einem Erstmeldebogen registriert hatten, wurde im Rahmen einer prospektiven Kohortenstudie Anfang 2013 ein Folgemeldebogen zugesandt. Außerdem wurden mithilfe standardisierter Fragebögen Daten zu Lebensqualität (dermatology life quality index, DLQI) und Stigmatisierungserfahrungen (perceived stigmatization questionnaire, PSQ; social comfort questionnaire, SCQ) erhoben. ERGEBNISSE: 83 % der Patienten oder deren Eltern antworteten (Altersdurchschnitt 11,2 Jahre, Median 6 Jahre; mittleres Follow-up 4,4 Jahre). Im Gesamtkollektiv wurden vier Melanome diagnostiziert, davon zwei zerebrale Melanome im Kindesalter, ein kutanes Melanom im Erwachsenenalter und eines, das sich als proliferierender Knoten erwies. Bei vier Kindern wurde eine neurokutane Melanozytose festgestellt, drei davon mit neurologischer Symptomatik. Chirurgisch behandelt wurden 88 % (73/83). Achtundsiebzig Prozent der Befragten berichteten eine geringe oder keine Beeinträchtigung der Lebensqualität. Die wahrgenommene Stigmatisierung beziehungsweise Beeinträchtigung des sozialen Wohlbefindens war generell ebenfalls gering. SCHLUSSFOLGERUNGEN: Die Ergebnisse geben einen Überblick über die Situation von Patienten mit KMN in Deutschland, Österreich und der Schweiz. Ein Melanom entwickelte sich in 3 %, eine ZNS-Beteiligung bestand in 4 % der Fälle.

Clinical course, treatment modalities, and quality of life in patients with congenital melanocytic nevi - data from the German CMN registry.

BACKGROUND: Congenital melanocytic nevi (CMN) are associated with mental stress as well as medical risks for those affected. The German CMN registry was initiated in 2005. Herein, we present results from an interim analysis focusing on disease course, treatment modalities, and quality of life. PATIENTS AND METHODS: One hundred patients enrolled in the registry between 2005 and 2012 were included in this prospective cohort study, and asked to participate in a follow-up survey. In addition, standardized questionnaires were used to collect data on quality of life (dermatology life quality index, DLQI) and perceived stigmatization (perceived stigmatization questionnaire, PSQ; social comfort questionnaire, SCQ). RESULTS: Eighty-three percent of patients (or their parents) provided answers to the survey questions (mean patient age: 11.2 years, median: 6 years; mean follow-up: 4.4 years). Overall, four individuals were diagnosed with melanoma, including two pediatric cases with CNS melanoma, one adult with cutaneous melanoma, and one case which later turned out to be a proliferative nodule. Four children were diagnosed with neurocutaneous melanocytosis, three of whom exhibited neurological symptoms. Eighty-eight percent (73/83) of patients underwent surgery. Seventy-eight percent reported no or only minor impact of the CMN on quality of life. In general, perceived stigmatization and impairment of social well-being were also low. CONCLUSIONS: Our results provide an overview of the situation of CMN patients in Germany, Austria, and Switzerland. Three percent of patients developed melanoma; 4 % showed CNS involvement.

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.

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.

Influence of learning disabilities on the tumour predisposition syndrome NF1--survey from adult patients' perspective.

AIM: To analyze psychosocial burdens associated with neurofibromatosis type-1 (NF1) phenotype--visible symptoms, medical complications, learning disabilities (LD)--from patients' perspective with focus on LD. PATIENTS AND METHODS: A survey of 228 adult patients with NF1 was carried-out. Symptoms to estimate disease severity and visibility, and learning disability were assessed. Outcome parameters were social situation and psychosocial aspects. RESULTS: Social situation and psychosocial aspects differed depending on NF1 phenotype. Patients with LD (n=55) were less frequently in a partnership (p=0.005) or had children (p=0.015) than those without (n=132). They also reported a higher frequency of depression (p=0.019) and sensitivity to stress (p<0.001) and more uncertainty regarding NF1-associated symptoms. These differences were significant when adjusting for disease severity and self-perceived disease visibility. CONCLUSION: Beside the psychosocial needs of patients with LD with NF1, medical management of this sub-group should include doctor-patient communication in easy language to compensate for patients' lack of knowledge about symptoms associated with cancer.

Therapeutic benefits in atopic dermatitis care from the patients' perspective: results of the German national health care study 'Atopic Health'.

BACKGROUND/AIMS: Numerous therapies are recommended to treat atopic dermatitis. The German national health care study 'Atopic Health' generated nationwide data on the care situation from the patients' perspective. METHODS: Data for 1,678 adult patients were collected within a retrospective cohort study throughout the year 2010. Six scores to capture satisfaction with care, quality of life (Dermatology Life Quality Index, EQ-5D-VAS), therapeutic success and benefits (Patient Benefit Index) were analyzed using descriptive methods and analysis of variance. RESULTS: 82.1% of patients were highly satisfied with their treatment. Topical corticosteroids and climate therapies were associated with the best success ratings. Quality of life was moderately impaired (mean Dermatology Life Quality Index 8.5 ± 6.5). 88.4% of the patients indicated a relevant therapeutic benefit (Patient Benefit Index ≥ 1) with significantly better scores for topical immunomodulating therapies and climate therapies. CONCLUSION: The most frequently applied therapies presented pleasant success and benefit ratings, even if quality of life could be improved for more than one third of patients.

Drug supply for psoriasis - results from a national pharmacy network.

BACKGROUND: In Germany, drugs are to a large extent provided by pharmacies. Thus, investigations in pharmacies permit drug usage studies both on patients receiving prescribable drugs and using self-medication. The current study evaluated the quality of medical care, disease burden and spectrum of treatments for patients with psoriasis in a nationwide network of pharmacies. PATIENTS AND METHODS: A nationwide cross-sectional study was conducted in 61 pharmacies. Patients with psoriasis vulgaris who came to the pharmacy to obtain antipsoriatic drugs or basic ointments were consecutively recruited, interviewed and asked to complete a standardized questionnaire. The questionnaire focused on socio-demographic characteristics and prior therapies for psoriasis. Furthermore, data on the patient's treatment satisfaction, disease-related burden, and treatment adherence were evaluated. In addition, the proportion and significance of health care providers for psoriasis as well as the number of patients using self-medication were assessed. RESULTS: The data on 241 patients show a high and long-lasting disease-related burden. A high utilization of resources was found. Dermatologists were the most frequently consulted providers (reported by 77.1 % of patients), followed by general practitioners (10.4 %). 3.5 % of patients were using self-medication. Self-reported adherence with treatment was moderate (71.6 %). Patient satisfaction varied considerably and demonstrated the need for improvement. CONCLUSIONS: Psoriasis is a socio-economically relevant disease. Health care is provided primarily by dermatologists. Surveying patients in a national network of pharmacies is a unique and effective way of collecting relevant "real world" data. Selection biases related to the health care setting are minimized.

Quality of psoriasis care from the patients' perspective--results of the national health care study PsoReal.

BACKGROUND: Two national surveys conducted in 2005 and 2007 indicated deficits in psoriasis care in Germany, although a significant improvement could be observed. When assessing health care provision it is crucial to take the patient's perspective into consideration. Therefore different approaches may be necessary. OBJECTIVES: (1) To survey reliable data on the health care situation of psoriasis vulgaris from the perspective of patient organisation members. (2) To compare the health care of patient organisation members 2008 with patients surveyed in dermatological centres 2005 and 2007. METHODS: A nationwide, non-interventional, cross-sectional study: 2,449 patient members of the "Psoriasis-Bund e.V.", the largest patient organization for psoriasis in Germany, were interviewed. DATA COLLECTED: sociodemographics; medical history; therapies; health-related quality of life; patient-defined treatment benefit. RESULTS: Quality of life was found to be considerably impaired (DLQI>10) in 23.6% of patients (compared to 34.1%/28.2% in 2005/2007). 49.1% had received systemic therapeutics (vs. 33.0%/47.3% in 2005/2007). On average, the participants had been absent from work for 8 days in the previous year because of their psoriasis (vs. 3.9/4.0 days in 2005/2007). CONCLUSION: Using the same indicators, the members of the patient organisation participating in 2008 rated their health care situation better than patients surveyed in 2005 and 2007. This may be attributed to the fact that members of patient organisations are better informed, which can lead to a more differentiated perception of burden of disease and better access to health care facilities.

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.

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.