Significant decrease in quality of life in patients with pemphigus vulgaris: Results from the German Bullous Skin Disease (BSD) Study Group
ABSTRACT 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.
- [Show abstract] [Hide abstract]
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.British Journal of Dermatology 06/2008; 158(5):1029-34. DOI:10.1111/j.1365-2133.2008.08481.x · 4.10 Impact Factor
- [Show abstract] [Hide abstract]
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.Dermatology 08/2008; 217(3):244-9. DOI:10.1159/000148252 · 1.69 Impact Factor
- [Show abstract] [Hide abstract]
ABSTRACT: The Dermatology Life Quality Index (DLQI) is one of the most widely used dermatology-specific quality of life instruments. Over the last 5 years there has been great interest in its use. To collect and present all information regarding the technical properties and the clinical use of the DLQI from the date it was published to the end of 2007 for use as a single source of reference. A detailed literature search was conducted using electronic reference databases and the DLQI library in the Department of Dermatology, Cardiff University. All publications mentioning any aspect of the DLQI, from the time of its development to the end of 2007, were identified and the data concerning the DLQI in terms of its psychometric analysis, and use in clinical trials, epidemiological studies and health services research, were extracted and tabulated with all the relevant references. In total, 272 full articles which have included the DLQI were reviewed. Studies described in these articles were divided into five main categories: psychometric studies, descriptive/epidemiological studies, drug (topical and systemic) trials, clinical practice research, and therapeutic interventions. The DLQI has been used in 33 different skin conditions in 32 countries and is available in 55 languages. Psychometric aspects of the DLQI such as validity, reliability, responsiveness to change, factor structure, and minimal important difference were described in 115 studies. The DLQI has been used in 33 studies assessing the effectiveness of 14 different types of therapeutic interventions and in 37 studies evaluating nine types of clinical practice research. Sixty studies have used it alone or in parallel with other instruments as an outcome measure in clinical trials of 18 systemic drugs while 22 studies have used it in 14 different topical drug trials. The DLQI has also been used in 27 multinational studies. During the last 14 years there has been a gradual increase in the international use of the DLQI. The brevity and simplicity of use of the DLQI has resulted in its popularity both in clinical practice and in research. However, there are various issues in particular regarding its unidimensionality, differential item functioning, and minimal clinically important difference, which require further research. This article should facilitate the work of potential users of the DLQI by providing a readily available source of references for different aspects of the DLQI.British Journal of Dermatology 10/2008; 159(5):997-1035. DOI:10.1111/j.1365-2133.2008.08832.x · 4.10 Impact Factor