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

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 condu...

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Autores principales: Ogunsanya, M.E., Brown, C.M., Lin, D., Imarhia, F., Maxey, C., Chong, B.F.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Elsevier 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6116830/
https://www.ncbi.nlm.nih.gov/pubmed/30175217
http://dx.doi.org/10.1016/j.ijwd.2018.01.002
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author Ogunsanya, M.E.
Brown, C.M.
Lin, D.
Imarhia, F.
Maxey, C.
Chong, B.F.
author_facet Ogunsanya, M.E.
Brown, C.M.
Lin, D.
Imarhia, F.
Maxey, C.
Chong, B.F.
author_sort Ogunsanya, M.E.
collection PubMed
description 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.
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spelling pubmed-61168302018-08-31 Understanding the disease burden and unmet needs among patients with cutaneous lupus erythematosus: A qualitative study()() Ogunsanya, M.E. Brown, C.M. Lin, D. Imarhia, F. Maxey, C. Chong, B.F. Int J Womens Dermatol Article 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. Elsevier 2018-04-13 /pmc/articles/PMC6116830/ /pubmed/30175217 http://dx.doi.org/10.1016/j.ijwd.2018.01.002 Text en © 2018 The Authors http://creativecommons.org/licenses/by/4.0/ This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Ogunsanya, M.E.
Brown, C.M.
Lin, D.
Imarhia, F.
Maxey, C.
Chong, B.F.
Understanding the disease burden and unmet needs among patients with cutaneous lupus erythematosus: A qualitative study()()
title Understanding the disease burden and unmet needs among patients with cutaneous lupus erythematosus: A qualitative study()()
title_full Understanding the disease burden and unmet needs among patients with cutaneous lupus erythematosus: A qualitative study()()
title_fullStr Understanding the disease burden and unmet needs among patients with cutaneous lupus erythematosus: A qualitative study()()
title_full_unstemmed Understanding the disease burden and unmet needs among patients with cutaneous lupus erythematosus: A qualitative study()()
title_short Understanding the disease burden and unmet needs among patients with cutaneous lupus erythematosus: A qualitative study()()
title_sort understanding the disease burden and unmet needs among patients with cutaneous lupus erythematosus: a qualitative study()()
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6116830/
https://www.ncbi.nlm.nih.gov/pubmed/30175217
http://dx.doi.org/10.1016/j.ijwd.2018.01.002
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