Significant decrease in quality of life in patients with pemphigus vulgaris: Results from the German Bullous Skin Disease (BSD) Study Group

Dermatologische Klinik mit Poliklinik, Friedrich-Alexander-Universität, Erlangen-Nürnberg, Germany.
Journal der Deutschen Dermatologischen Gesellschaft (Impact Factor: 2.05). 07/2005; 3(6):431-5. DOI: 10.1111/j.1610-0387.2005.05722.x
Source: PubMed


Pemphigus vulgaris is a potentially life-threatening autoimmune disorder of the skin and mucous membranes characterized by antibodies against epidermal adhesion molecules. Clinically characteristic are painful chronic blisters or erosions of mucous membranes and skin. There are no published studies on the impact o this disease on quality of life.
This registration was performed within the scope of the German BSD (Bullous Skin Disease) study group, from November 1997 until January 2002. A total of 36 patients with the first diagnosis of pemphigus vulgaris were registered at the university hospitals of Dresden, Erlangen, Kiel, Mannheim, München and Würzburg. Thirty of the 36 (83 %) patients participated in the quality of life questionnaire utilizing the German version of 'Dermatology Life Quality Index' (DLQI) provided by A. Y. Finlay. The DLQI varies from 0 to 30 with an increased DLQI score indicating a decrease in quality of quality.
The overall DLQI total score of 10 +/- 6.7 in the investigated pemphigus patients was significantly increased in comparison to other skin diseases.
These results suggest that the DLQI can be a very useful additional outcome criteria for clinical studies with pemphigus vulgaris and in the treatment of these patients.

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    • "It can be simply handed to the patient and completed in one to two minutes. The questions are categorized to 6 heading items: symptoms and feelings (questions 1 and 2), daily activities (questions 3 and 4), leisure (questions 5 and 6), and personal relationships (questions 8 and 9) each item with a maximum score of 6; and work and school (question 7), and treatment (question10) each item with a maximum score of 3. The DLQI score was calculated by summing the score of each question resulting in a maximum of 30 and a minimum of 0. The higher the score, the more quality of life is impaired.[16] "
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    ABSTRACT: There exists a high prevalence of psychiatric disorders in dermatological patients. Although, investigators have evaluated psychiatric aspects of the patients suffering from skin diseases; there are rare studies concerning mental health in pemphigus patients. The objective of this study was to evaluate mental health status and quality of life of newly diagnosed pemphigus patients. Between April 2007 and June 2008, all newly diagnosed pemphigus patients attending the outpatient clinic of a dermatological hospital were given a questionnaire comprising the GHQ-28 and DLQI to fill out. Of 283 patients, 212 complete forms were returned. The bimodal score of GHQ ranged from 0 to 26 (Mean = 9.4) and the Likert score of GHQ ranged from 6 to 68 (Mean = 31.9). The DLQI score ranged between 0 and 30 (Mean of 13.8). A total of 157 patients (73.7%) were yielded to be possible cases of mental disorder considering GHQ-28 bimodal scores. Significant correlation was detected between the DLQI score and bimodal and Likert scoring of GHQ-28. Our study has depicted high prevalence of psychiatric comorbidity in pemphigus patients. It underlines the fact that physicians, who are in-charge of care for these patients, are in an exceptional position to distinguish the psychiatric comorbidity and to take appropriate measures.
    No preview · Article · Mar 2011 · Indian Journal of Dermatology
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    ABSTRACT: Pemphigus vulgaris and pemphigus foliaceus are rare, potentially life-threatening, autoimmune disorders characterized by antibodies to epidermal adhesion molecules. Clinical characteristics are painful chronic erosions of mucous membranes and of the skin. There are only few published studies on the impact of the disease on the health status (HS) of patients with these conditions. To assess the impact of disease on the HS of patients with pemphigus. Fifty-eight patients enrolled at the Bullous Skin Diseases Unit of IDI-IRCCS in the period January-June 2006 were assessed for their HS using the Medical Outcomes Study 36-item short form health survey (SF-36) questionnaire and for anxiety and depression using the Institute for Personality and Ability Testing questionnaires. A compromised HS on both the physical and the psychosocial scales was observed, similar to other chronic dermatological diseases such as psoriasis. Patients with anxiety had severe disease as measured by the Physician's Global Assessment and the degree of mucocutaneous involvement, as well as those with a more recent disease onset. A better HS was observed in patients whose clinical condition was rated as nonsevere, and also in patients with pemphigus foliaceus. In pemphigus vulgaris, antidesmoglein 3 antibody levels directly correlated with clinical severity and with lower SF-36 scores. HS evaluated with the SF-36 can be a very useful additional outcome criterion in clinical studies with pemphigus. The management of the disease must take into account its impact on various aspects of life of the patient.
    No preview · Article · Jun 2008 · British Journal of Dermatology
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    ABSTRACT: Facial lipoatrophy (FLA) is a stigmatizing complication of antiretroviral therapy in patients with human immunodeficiency virus (HIV) infection. To evaluate the efficacy and safety of facial volume restoration in patients with HIV-associated FLA, using a novel long-lasting, hyaluronic acid high-density formulation. Twenty-one males with FLA were enrolled in this prospective, open-label, monocenter pilot study. Each patient received subcutaneous implantation of high-density hyaluronic acid. The aesthetic outcome was evaluated using the Global Aesthetic Improvement Scale every 3 months until 12 months after implantation. Additionally, patient satisfaction was analyzed, changes in patient quality of life were recorded using the Dermatology Life Quality Index (DLQI), and side effects were documented. Nineteen patients (n = 19; 90.5%) were much improved or better 3 months after implantation, while 2 patients (n = 2; 9.5%) were improved and received a touch-up. Twelve months after implantation, still 16 patients (n = 16; 76.2%) were much improved or better, and 4 patients (n = 4; 19%) were improved. Patient satisfaction was high at every evaluation point over 12 months. The median DLQI before treatment was 16 (range: 13-19). Twelve months after augmentation, a significant decrease in the DLQI was observed (median: 9; range: 6-14) resulting in a relative reduction and significant improvement of the DLQI of 43.75% (p < 0.05), respectively. Side effects were mild and temporary (ecchymosis, edema and erythema). We propose the use of this new formulated hyaluronic acid for HIV-associated FLA as an efficacious and safe therapeutic option causing immediate augmentation of the soft tissues. The implant showed sustained longevity of 12 months and resulted in significant aesthetic improvement. It is notable for its simple and safe method of implantation and results in high patient satisfaction.
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