Relationship Between Psychosocial Burden of Skin Conditions and Symptoms: Measuring the Attributable Fraction.

Skin conditions often have a severe impact on the physical and psychosocial domains of patients' quality of life, but the relationship between these domains has been studied little. This study estimated the fraction of psychosocial burden that may be attributable to symptoms, using the Skindex-17 quality of life questionnaire (symptoms and psychosocial scales) in 2,487 outpatients. The excess proportion of psychosocial burden for each skin condition was computed. Overall, 79.8% of the psychosocial burden of patients with severe symptoms may be attributable to the symptoms. For patients with mild symptoms this figure is 49.7%. A great heterogeneity was observed, from -0.9% for patients with scars, up to more than 90% for conditions such as lichen planus and psoriasis. While these results will have to be confirmed in longitudinal studies, they seem to indicate that, by targeting specific symptoms, a substantial portion of the psychosocial burden of skin diseases could be spared.

Information needs of patients with melanoma: a nursing challenge.

Evidence continues to suggest that patients with cancer require more information about their disease and its consequences. To evaluate the information needs of patients with advanced melanoma compared to patients with other malignancies, a cross-sectional study was conducted on 221 unselected patients from the oncology department of a dermatologic hospital In Italy. Patients completed the Edmonton Symptom Assessment System and the Need Evaluation Questionnaire, two standardized tools for symptoms and psychosocial needs assessment. Results highlight that patients with advanced melanoma have, in general, a higher need for information compared to patients with other cancers, even if they report fewer symptoms. Future studies on the needs of patients with melanoma may contribute to tailored and more satisfactory patient-centered care. Recommendations for clinical practice include that particular attention should be paid by the oncology team to the need for a strong therapeutic relationship.

Living with psoriasis: prevalence of shame, anger, worry, and problems in daily activities and social life.

Psychosocial problems are frequent among patients with psoriasis. The aim of this study was to analyse the prevalence of some specific psychosocial issues. These were evaluated in 936 patients using the emotions and functioning scales of the Skindex-29 questionnaire. The problems most frequently experienced were: shame, anger, worry, difficulties in daily activities and social life. All problems were associated with the severity of psoriasis and with depression or anxiety. Shame, worry and annoyance were more frequent in women than in men, and shame and anger were associated with a low level of education. Impairment in work/hobbies was significantly higher in patients with palmoplantar psoriasis and those with arthro-pathic psoriasis. In conclusion, clinicians could gain important insights about their patients by looking at the single items of a quality of life instrument, to identify patients with high levels of emotional and social problems, in order to improve quality of care.

Self-reported psoriasis severity and quality of life assessment at Comano spa.

The relationship between quality of life (QoL) and skin lesion improvement due to psoriasis treatment has been recently underlined. Our objective was to study the self-reported disease severity reduction and QoL during spa treatments and identify predictors of psoriasis improvement. Patients were assessed before and after spa treatment with a disease-specific QoL questionnaire (Skindex-17) and self-administered psoriasis area and severity index (SAPASI). Their correlations were tested. Factors predicting a reduction in Skindex-17 or in SAPASI score were evaluated through regression analysis. Significant mean overall reductions in SAPASI (27%) and Skindex-17 scores (psychosocial: 6%; symptoms: 2%) were achieved. However, 51% of patients reporting SAPASI improvement also reported a worsened QoL. Pearson's correlation between the SAPASI and Skindex-17 scores was poor (r=0.26 for SAPASI-symptoms and r=0.40 for SAPASI-psychosocial). Logistic regression analysis identified the age of psoriasis onset before 30 years (OR=3.81, 95% CI 1.22-11.95, p=0.02) and a basal Skindex-17 symptoms value greater than 5 (OR=3.37, 95% CI 1.12-10.08, p=0.03) as predictive of both SAPASI and Skindex-17 score reductions. Age-of-onset-based stratification identifies the subset most likely to respond to spa treatment. Combining the Skindex-17 with SAPASI provides a more comprehensive patient-centered assessment. We recommend this assessment for psoriasis patients undergoing spa treatment.

Family burden in epidermolysis bullosa is high independent of disease type/subtype.

Epidermolysis bullosa is a rare, inherited group of disorders characterized by blistering of the skin following friction or mechanical trauma. The aim of this study was to assess the family burden of epidermolysis bullosa in children aged 0-7 years. A postal survey was conducted. The perceived severity of the disease was evaluated by the caregivers, using the Patient Global Assessment 5-point scale. The caregiver received the Family Strain Questionnaire and the 12-item General Health Questionnaire to assess the probable presence of depression/anxiety. A single-item analysis was also performed for questions related to the burden of disease. Forty-two families were invited to participate. Data from 28 young patients and their caregivers were analysed (response rate 66.7%). The family burden increased with increasing caregiver's perceived disease severity, with increasing patient's body surface involved, and if parents had depression/anxiety, reaching statistical significance in several Family Strain Questionnaire scales. The family burden due to epidermolysis bullosa is very high independent of disease type/subtype.

Quality-of-life assessment in patients with pemphigus using a minimum set of evaluation tools.

BACKGROUND: Pemphigus is a rare but severe autoimmune disease caused by autoantibodies directed against desmosomes, and clinically characterized by bullae and painful erosions of the skin and mucous membranes. The two major subtypes, vulgaris and foliaceus, are distinguished by the depth of the cleavage plane in the epidermis. Very few studies have investigated the quality of life (QoL) of patients with pemphigus, all reporting a strong impact on physical and emotional status. OBJECTIVES: We sought to achieve an exhaustive description of health status in a large sample of patients with pemphigus, assess the impact on QoL, and define a minimum set of QoL tools for clinical practice. METHODS: In all, 139 patients with pemphigus enrolled at our bullous skin diseases department from February 2007 to February 2008 were given the Medical Outcome Study 36-item short form health survey questionnaire to assess the health status, the Skindex-29 to evaluate the impact of dermatologic-specific aspects, and the 12-item General Health (GH) Questionnaire to detect patients with psychological problems. Clinical severity of the disease was assessed by a dermatologist by the Physician Global Assessment index and the Ikeda index. RESULTS: A strong impact of pemphigus on health status was observed, especially in women and older patients, and in patients with mucocutaneous involvement. A significant association between disease severity and lower Medical Outcome Study 36-item short-form questionnaire values was also observed. Patients with pemphigus showed a markedly impaired overall QoL compared with healthy control subjects on all 3 Skindex-29 scales (symptoms mean scores 37 vs 8, in patients and control subjects, respectively; emotions 37 vs 14; functioning 33 vs 4; P < .001); disease severity was also significantly associated with Skindex-29 scores, on all 3 scale scores for both Physician Global Assessment and Ikeda values (P < .05). GH Questionnaire positivity, reflecting probable minor psychiatric nonpsychotic conditions, such as depression and anxiety, was detected in 39.7% of patients. LIMITATIONS: The small sample size in the different treatment groups prevented a more detailed analysis, failing to highlight an association between treatment type and QoL impairment. CONCLUSIONS: In this study we described a strong impact of pemphigus on patients' QoL both for the dermatology-specific and the GH aspects. The prevalence of patients with GH Questionnaire positivity was also very high (almost 40%). The introduction of the proposed minimal set of QoL evaluation tools would provide additional useful information to guide clinicians in the treatment of these patients.

Health related quality of life assessment in the routine clinical practice of a dermatology unit.

A descriptive study in a Dermatological Research Institution in Rome, Italy, was conducted to test the feasibility and acceptability of health related quality of life (HRQoL) assessment in the daily routine. Quality of life, and psychosocial distress evaluations were obtained for each patient. Patients were invited to complete the Skindex-29, GHQ-12, and SF-36. Results were returned to the clinical staff using standardised feed-back forms with: a) "categories" of QoL scores to help interpreting Skindex-29 scores; b) "warnings" pointing out problems that patients experienced "all the time"; c) categories of GHQ-12 scores for minor psychiatric problems; d) the classical SF-36 graph depicting the patient's "QoL profile" with normative references. The clinical staff were trained, and then their attitudes and behaviours were surveyed using a standardised questionnaire. For all 170 participants enrolled (63% males, 35% age > 64 years), feed-back forms were provided within three hours from data collection. For patients with repeated hospitalisations time-trends in HRQoL measurements were also provided. The acceptability, both for patients and the clinical staff, was high but the actual impact on clinical activities was limited. The routine assessment of HRQoL in dermatology is feasible and well accepted both by patients and by the clinical staff. The application of these widely used questionnaires should be implemented in a larger scale and evaluated in different settings.

[Risk of inappropriateness and efficiency assessment of hospitals]. / Ricoveri "a rischio di inappropriatezza" e valutazione dell'efficienza tecnica.

We evaluated with the Data Envelopment Analysis (DEA) 13 decision making units (DMU) at IDI -IRCCS for the years 2000 and 2001. Input variables were: cost for medical personnel, cost for non medical personnel and number of beds; output variables was the number of discharged patients weighted with DRG. Later in a second model we delete the cases considered to be at "high risk" to be inappropriate for treatment as inpatients. DEA instrument is confirmed useful in the efficiency evaluation for DMU at hospital level, ranking were different between the two models. The Health Direction can utilise the analysis to understand reasons of inefficiency and for incentive policy.