24
views
0
recommends
+1 Recommend
0 collections
    0
    shares
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      Understanding the disease burden and unmet needs among patients with cutaneous lupus erythematosus: A qualitative study ☆☆

      research-article

      Read this article at

      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Background

          Cutaneous lupus erythematosus (CLE) is a rare dermatologic autoimmune disease marked by photosensitive lesions that can vary in appearance depending on the subtype. The extent to which CLE affects a patient’s quality of life (QoL) has not been fully characterized. Focus groups were conducted to explore patients’ perspectives of how CLE has affected their lives and to understand the unmet needs in regards to CLE treatment and care.

          Methods

          This qualitative study involved three focus groups with a total of 19 patients with CLE. A moderator guide containing open-ended questions was used to assess how CLE affects overall QoL. The focus groups were audio-recorded with notetaking. Data were content-analyzed to identify emergent themes.

          Results

          Four themes emerged as important to patients with CLE: disease sequelae, social interactions, functioning, and unmet needs. Most patients reported decreased QoL due to signs and symptoms such as dyspigmentation and scarring. Having CLE negatively affected patients’ mental health and personal relationships and led to negative coping strategies, such as recreational drug use. Issues related to body image were also elicited by patients. Patients cited unmet needs including lack of treatments to improve chronic skin lesions of CLE and inadequate patient education on living with CLE.

          Conclusions

          Providers can look for signs of QoL impairment in patients with CLE by asking questions related to body image, mental health, social isolation, and coping mechanisms. Future QoL measures can include the effect of CLE-specific attributes such as scarring and dyspigmentation to empower patients’ voices in determining therapeutic efficacy in future clinical trials. Findings from our study have added a new understanding of daily experiences that were elicited directly from patients with CLE.

          Related collections

          Most cited references26

          • Record: found
          • Abstract: found
          • Article: not found

          Focus-group interview and data analysis.

          In recent years focus-group interviews, as a means of qualitative data collection, have gained popularity amongst professionals within the health and social care arena. Despite this popularity, analysing qualitative data, particularly focus-group interviews, poses a challenge to most practitioner researchers. The present paper responds to the needs expressed by public health nutritionists, community dietitians and health development specialists following two training sessions organised collaboratively by the Health Development Agency, the Nutrition Society and the British Dietetic Association in 2003. The focus of the present paper is on the concepts and application of framework analysis, especially the use of Krueger's framework. It provides some practical steps for the analysis of individual data, as well as focus-group data using examples from the author's own research, in such a way as to assist the newcomer to qualitative research to engage with the methodology. Thus, it complements the papers by Draper (2004) and Fade (2004) that discuss in detail the complementary role of qualitative data in researching human behaviours, feelings and attitudes. Draper (2004) has provided theoretical and philosophical bases for qualitative data analysis. Fade (2004) has described interpretative phenomenology analysis as a method of analysing individual interview data. The present paper, using framework analysis concentrating on focus-group interviews, provides another approach to qualitative data analysis.
            Bookmark
            • Record: found
            • Abstract: found
            • Article: not found

            Skindex, a quality-of-life measure for patients with skin disease: reliability, validity, and responsiveness.

            To measure the effects of skin disease on patients' quality of life, we developed a 61-item self-administered survey instrument called Skindex. Skindex has eight scales, each of which addresses a construct, or an abstract component, in a comprehensive conceptual framework: cognitive effects, social effects, depression, fear, embarrassment, anger, physical discomfort, and physical limitations. Item responses are standardized from 0 (no effect) to 100 (maximal effect); a scale score is the average of responses to items addressing a construct. In 201 patients seen by dermatologists, mean scale scores (+/-SD) ranged from 14 (+/-17) for physical limitations to 31 (+/-22) for physical discomfort. Scale scores were reproducible after 72 h (r = 0.68-0.90) and were internally consistent (Cronbach's alpha = 0.76-0.86). Construct validity was assessed in two ways: (i) in a comparison of patients with inflammatory dermatoses and patients with isolated lesions, patients with inflammatory dermatoses had higher scale scores, and (ii) in an exploratory factor analysis, 78% of the common variance was explained by seven factors that correlated with the scale scores of Skindex. Most of the a priori scale scores changed in the expected direction in patients who reported that their skin conditions had improved or worsened after 6 mo. Finally, physicians' judgments of disease severity did not consistently correlate with Skindex scores. These preliminary data suggest that Skindex reliably and responsively measures the effects of skin disease on patients' quality of life and may supplement clinical judgments of disease severity.
              Bookmark
              • Record: found
              • Abstract: found
              • Article: not found

              Incidence of cutaneous lupus erythematosus, 1965-2005: a population-based study.

              To assess trends in the cutaneous variants of lupus erythematosus (CLE) and to ascertain the incidence of CLE over the past 4 decades.
                Bookmark

                Author and article information

                Contributors
                Journal
                Int J Womens Dermatol
                Int J Womens Dermatol
                International Journal of Women's Dermatology
                Elsevier
                2352-6475
                13 April 2018
                September 2018
                13 April 2018
                : 4
                : 3
                : 152-158
                Affiliations
                [a ]College of Pharmacy, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma
                [b ]College of Pharmacy, The University of Texas at Austin, Texas
                [c ]Department of Dermatology, University of Texas Southwestern Medical Center, Dallas, Texas
                [d ]College of Natural Sciences, The University of Texas at Austin, Austin, Texas
                Author notes
                [* ]Corresponding author. Motolani-ogunsanya@ 123456ouhsc.edu
                Article
                S2352-6475(18)30008-X
                10.1016/j.ijwd.2018.01.002
                6116830
                fe3ebf79-d624-4fc0-a4f1-09cb7f568d66
                © 2018 The Authors

                This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

                History
                : 30 October 2017
                : 30 January 2018
                : 31 January 2018
                Categories
                Article

                cutaneous lupus erythematosus,outcomes,unmet needs,qualitative,focus group,burden,quality of life

                Comments

                Comment on this article