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      Assessment of the quality of life of Egyptian and Tunisian autoimmune bullous diseases’ patients using an Arabic version of the autoimmune bullous disease quality of life and the treatment of autoimmune bullous disease quality of life questionnaires*

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          Abstract

          Background:

          The Autoimmune Bullous Disease Quality of Life (ABQOL) and the Treatment of Autoimmune Bullous Disease Quality of Life (TABQOL) questionnaires proved to be reliable tools that measure the disease and treatment burden.

          Objectives:

          We aimed to assess the ABQOL and TABQOL in the Arabic population.

          Methods:

          The English questionnaires were translated into the Arabic language by a certified translation agency. Eighty autoimmune bullous disease (AIBD) patients were included in this study. Patients were asked to answer 2 questionnaires. After 1 week the same patients were asked to answer the same questionnaires again.

          Results:

          The age of the patients ranged from 19 to 81 years (mean=46), 19 males, 61 females. The ABQOL ranged from 0-37 (mean=16.4±9.2). The TABQOL ranged from 2-43 (mean=21.5±9.4). Test-retest reliability was acceptable, Cronbach’s alpha was 0.76 for ABQOL and 0.74 for TABQOL. There was no significant correlation between the age of the patients and ABQOL, r =-0.2, p value was 0.183. There was a significant negative correlation between the age of the patients and the TABQOL, r=-0.2, p value was 0.039. There was a significant negative correlation between the education of the patients and the TABQOL, r=-0.3, p value was 0.007.

          Study limitations:

          Small sample size of some AIBDs and patients with severe disease.

          Conclusion:

          Objective and valuable measurements such as ABQOL and TABQOL are now available to help physicians understand their patient’s distress and should be used in every patient with AIBD. Younger and less educated patients appear to have more effects on their QOL from the treatments.

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          Most cited references17

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          Diagnosis and Management of Pemphigus: recommendations by an International Panel of Experts

          Several European countries recently developed international diagnostic and management guidelines for pemphigus, which have been instrumental in the standardization of pemphigus management. We now present results from a subsequent Delphi consensus to broaden the generalizability of the recommendations. A preliminary survey, based on the European Dermatology Forum and the European Academy of Dermatology and Venereology guidelines, was sent to a panel of international experts to determine the level of consensus. The results were discussed at the International Bullous Diseases Consensus Group in March 2016 during the annual American Academy of Dermatology conference. Following the meeting, a second survey was sent to more experts to achieve greater international consensus. The 39 experts participated in the first round of the Delphi survey, and 54 experts from 21 countries completed the second round. The number of statements in the survey was reduced from 175 topics in Delphi I to 24 topics in Delphi II on the basis of Delphi results and meeting discussion. Each recommendation represents the majority opinion and therefore may not reflect all possible treatment options available. We present here the recommendations resulting from this Delphi process. This international consensus includes intravenous CD20 inhibitors as a first-line therapy option for moderate-to-severe pemphigus.
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            Pemphigus.

            Pemphigus is a rare autoimmune disease that results in blistering of the skin and oral cavity. It is caused by autoantibodies directed against cell-surface antigens on keratinocytes, which when targeted lose their cellular adhesion properties and separate from one another to form blisters within the epidermis. Differences in the particular antigens targeted by the antibodies and in the distribution of these antigens in the different regions of the body and in the separate layers of the epidermis result in different clinical manifestations of the disease. The disease is diagnosed based on its clinical manifestations (flaccid blisters and erosions on skin and oral mucosa), histology (epidermal acantholysis), and immunological abnormalities (circulating and tissue-fixed antibodies against keratinocyte surface antigens). Pemphigus, which if left untreated is almost always fatal, is generally managed with topical, oral, or intralesional corticosteroids. Other options include plasmapheresis and intravenous immunoglobulin (IVIg), coupled with cytotoxic drugs. Immunosupressants, anti-inflammatory drugs, and antibiotics are used as adjuvants, but apart from IVIg, these therapy options are non-specific and more research is needed to develop treatments with improved side-effect profiles.
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              Reliability and convergent validity of two outcome instruments for pemphigus.

              A major obstacle in performing multicenter controlled trials for pemphigus is the lack of a validated disease activity scoring system. Here, we assess the reliability and convergent validity of the PDAI (pemphigus disease area index). A group of 10 dermatologists scored 15 patients with pemphigus to estimate the inter- and intra-rater reliability of the PDAI and the recently described ABSIS (autoimmune bullous skin disorder intensity score) instrument. To assess convergent validity, these tools were also correlated with the Physician's Global Assessment (PGA). Reliability studies demonstrated an intra-class correlation coefficient (ICC) for inter-rater reliability of 0.76 (95% confirdence interval (CI)=0.61-0.91) for the PDAI and 0.77 (0.63-0.91) for the ABSIS. The tools differed most in reliability of assessing skin activity, with an ICC of 0.39 (0.17-0.60) for the ABSIS and 0.86 (0.76-0.95) for the PDAI. Intra-rater test-retest reliability demonstrated an ICC of 0.98 (0.96-1.0) for the PDAI and 0.80 (0.65-0.96) for the ABSIS. The PDAI also correlated more closely with the PGA. We conclude that the PDAI is more reproducible and correlates better with physician impression of extent. Subset analysis suggests that for this population of mild-to-moderate disease activity, the PDAI captures more variability in cutaneous disease than the ABSIS.
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                Author and article information

                Journal
                An Bras Dermatol
                An Bras Dermatol
                abd
                Anais Brasileiros de Dermatologia
                Sociedade Brasileira de Dermatologia
                0365-0596
                1806-4841
                Jul-Aug 2019
                Jul-Aug 2019
                : 94
                : 4
                : 399-404
                Affiliations
                [1 ] Department of Dermatology, Faculty of Medicine, Cairo University, Cairo, Egypt.
                [2 ] Dermatology Department, La Rabta Hospital, Universite Tunis, EL Manar, Tunisia.
                [3 ] Department of Dermatology, Université de Tunis El Manar - Military Hospital of Tunis, Tunis, Tunisia.
                [4 ] Department of Dermatology, St George Hospital, Faculty of Medicine, UNSW Medicine, Australia.
                Author notes
                Mailing Address: Marwah Adly Saleh. E-mail: salehmarwah@ 123456kasralainy.edu.eg
                Author information
                http://orcid.org/0000-0002-9487-8708
                http://orcid.org/0000-0003-1886-3528
                http://orcid.org/0000-0002-9222-2051
                http://orcid.org/0000-0002-3167-2454
                http://orcid.org/0000-0003-2971-0199
                Article
                10.1590/abd1806-4841.20197198
                7007032
                31644610
                14f15d58-d456-4216-8055-eec7081cae1c

                This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial No Derivative License, which permits unrestricted non-commercial use, distribution, and reproduction in any medium provided the original work is properly cited and the work is not changed in any way.

                History
                : 10 April 2017
                : 07 May 2018
                Categories
                Investigation

                arab world,arabs,autoimmune diseases,pemphigus,pemphigoid, bullous,quality of life,skin diseases, vesiculobullous

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