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Cutaneous Lupus Concerns from the Patient Perspective: a Qualitative Study

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Cutaneous Lupus Concerns from the Patient Perspective: a Qualitative Study Cutaneous lupus Lupus Sci Med: first published as 10.1136/lupus-2020-000444 on 27 August 2021. Downloaded from Cutaneous lupus concerns from the patient perspective: a qualitative study Daisy Yan ,1,2 Danielle Zamalin,1,2 Srita Chakka,1,2 Rebecca Krain,1,2 Josef Concha,1,2 Rui Feng,3 Sarah Ahmed,1,2 Joyce Okawa,1,2 Victoria P Werth1,2 To cite: Yan D, Zamalin D, ABSTRACT Chakka S, et al. Cutaneous Objective There is a need to identify concerns unique Key messages lupus concerns from the patient to patients with cutaneous lupus erythematosus (CLE), perspective: a qualitative study. What is already known about this subject? which may not be captured by current common- practice Lupus Science & Medicine Ogunsanya et al, using a focus group approach, were dermatological quality-of- life tools. This study formally ► 2021;8:e000444. doi:10.1136/ among the first to capture cutaneous lupus patient- characterises what bothers patients with CLE about lupus-2020-000444 reported outcomes with regard to quality of life. their disease by conducting semistructured, qualitative interviews. What does this study add? DY and DZ are joint first authors. Methods Sixteen patients with CLE were interviewed ► Concerns unique to patients with cutaneous lu- about how their cutaneous findings impact their daily life. pus erythematosus (CLE) are not fully captured by Received 9 September 2020 Each interview was transcribed, coded and categorised common- practice dermatology quality- of- life tools. Accepted 4 February 2021 for recurrent themes. Current CLE activity and damage This study aims to formally characterise what both- were also assessed by the Cutaneous Lupus Activity and ers patients with CLE about their disease by con- Severity Index tool. ducting semistructured, qualitative interviews. These Results Responses were categorised into six themes, conversations were conducted one- on- one in clinic including Fear of Disease Progression, Unwanted Attention, rooms with the hope to provide an added sense of Self-Consciousness, Physical Signs/Symptoms, Emotional privacy and security, as compared with Ogunsanya’s Symptoms and Functional Decline. The most commonly focus group approach. reported themes were Self- Consciousness, mentioned by ► Themes were also grouped by patient character- 13 of 16 (81.3%) patients, Physical Symptoms, mentioned istics such as race and sex to determine recurrent by 12 of 16 (75%), and then Fear of Disease Progression, patterns. by 11 of 16 (68.8%). Frequently mentioned physical signs/ symptoms included erythema, itch, dyspigmentation, How might this impact on clinical practice or future developments? scar and alopecia. The physical signs/symptoms were http://lupus.bmj.com/ categorised as activity signs/symptoms, damage signs ► The patient experiences and resultant themes eluci- and other. For activity signs, erythema was mentioned dated by this study are worth noting in future stan- most frequently (5 of 16), then scale (2 of 16). For activity dardised estimations of the quality of life of patients symptoms, itch was mentioned most frequently (6 of 16), with CLE. Additionally, the concerns shown by these then pain (5 of 16). For damage signs, dyspigmentation interviews are important topics for providers to dis- was mentioned most frequently (4 of 16), followed by cuss when evaluating patient disease progression. scarring (3 of 16). Patients less than 60 years old were more likely to report emotional symptoms than older on September 28, 2021 by guest. Protected copyright. 1 patients (p<0.05), but there was no significant variation CLE (SCLE) and acute CLE. Chronic CLE in frequency of reported themes between race, sex or itself can be further subtyped into more © Author(s) (or their subtype of CLE. specific forms, the most common of which employer(s)) 2021. Re- use Conclusions These patient experiences and resultant is discoid LE (DLE).2 Signs and symptoms permitted under CC BY-NC. No themes elucidated by this study are worth noting in future commercial re- use. See rights of CLE subtypes can include itch, scale, standardised estimations of the quality of life of patients photosensitivity, erythema, alopecia, scar and and permissions. Published by with CLE. Additionally, the concerns shown by these BMJ. fatigue.3 1 interviews are important topics for providers to discuss Dermatology, University of when evaluating patient disease progression. There is a wide range of severity in CLE, Pennsylvania, Philadelphia, and the skin lesions can be characterised Pennsylvania, USA as active or damage. The active lesions will 2Dermatology, Corporal Michael J Crescenz VA Medical Center, appear scaly and erythematous, while the Philadelphia, Pennsylvania, USA INTRODUCTION damage presents as dyspigmentation and 3Biostatistics, University of Lupus erythematosus (LE) is an autoimmune scarring. CLE lesions can be chronic in Pennsylvania, Philadelphia, condition that can target multiple organ nature, and according to Klein et al, patients Pennsylvania, USA systems, and thus can either present as cuta- with CLE experience a quality of life (QoL) Correspondence to neous LE (CLE) and/or SLE. A diagnosis of that is similar to or worse than patients with Dr Victoria P Werth; werth@ mail. CLE can be further categorised into one of chronic hypertension, congestive heart med. upenn. edu three main subtypes: chronic CLE, subacute failure or diabetes mellitus type 2.4 Available Yan D, et al. Lupus Science & Medicine 2021;8:e000444. doi:10.1136/lupus-2020-000444 1 Lupus Science & Medicine Lupus Sci Med: first published as 10.1136/lupus-2020-000444 on 27 August 2021. Downloaded from treatment options have only moderate rates of success, Table 1 Patient demographic and clinical characteristics with approximately 50% of patients with CLE improving with hydroxychloroquine, regarded as the first- line treat- Study N (%) Database N (%) ment for CLE.5 CLE refractory to antimalarials is often Age (years) 47.5 (34.5–65.5) refractory to second- line treatment, which can cause Sex side effects such as liver enzymes elevation, immunosup- Male 3 (18.75) 92 (18.8) pression and peripheral neuropathy.6 Prior studies have Female 13 (81.25) 394 (80.5) evaluated CLE QoL through quantitative measuring tools, such as the Skindex-29, Interpersonal Processes Race of Care survey (IPC-29) and Dermatology Life Quality Caucasian 8 (50) 298 (60.9) 7–9 Index (DLQI), among others. Ogunsanya et al, using African American 7 (43.75) 162 (33.1) a focus group approach, were among the first to capture 10 Asian/Pacific 1 (6.25) 19 (3.9) CLE patient- reported outcomes with regard to QoL. Islander The present study conducted similar, open- ended inter- Ethnicity views. However, these conversations were conducted one- on- one in clinic rooms to provide a sense of privacy and Hispanic 0 (0.0) 22 (4.5) security. According to Kaplowitz,11 individual interviews Non- Hispanic 16 (100) 467 (95.5) are 18 times more likely to raise more sensitive informa- CLE subtype tion than focus groups. Additionally, our questions were SCLE 3 (18.75) open- ended without reference to any specific symptoms DLE 10 (62.5) to avoid influencing patient responses. Other studies such as Arevalo-Bermudez et al had subjects with lower DLE +SCLE overlap 3 (18.75) median Cutaneous Lupus Activity and Severity Index Systemic versus cutaneous (CLASI) scores in both activity and damage.8 SLE +CLE 7 (43.75) This study aimed to identify the subjective experiences CLE 9 (56.25) of patients with CLE through semistructured, qualitative Current disease activity (CLASI) interviews. Six themes were identified during these patient interviews: Self- Consciousness, Physical Signs/Symp- Mild (0–9) 7 (43.5) toms, Fear of Disease Progression, Functional Decline, Moderate (10–19) 6 (37.5) Unwanted Attention and Emotional Symptoms. These Severe (≥20) 2 (12.5) themes are certainly interlinked, as self-consciousness Unknown 1 (6.25) and fear of progression result from the development of Current disease damage (CLASI) physical signs/symptoms. The most commonly reported http://lupus.bmj.com/ co- occurrence of themes were Self-Consciousness and Mild (0–5) 5 (31.25) Physical Signs/Symptoms. Moderate (6–17) 7 (43.75) Severe (≥18) 3 (18.75) Unknown 1 (6.25) METHODS Time since diagnosis (years) Sample and consent procedure Less than 1 year 3 (18.75) The subjects in this study were adults (n=16, age 19–86 on September 28, 2021 by guest. Protected copyright. years) with CLE, previously enrolled in the CLE database 1–5 years 2 (12.5) (n=486) of patients from the autoimmune dermatology 5–10 years 2 (12.5) clinic of the University of Pennsylvania. The prospective Mor e than 10 years 9 (56.25) longitudinal CLE database tracks disease progression Disease duration 14 (5.43 to 22.57) of patients over time using physician assessment tools (years, 95% CI) and patient QoL surveys. Inclusion criteria in both the substudy and broader database include patients who are CLASI, Cutaneous Lupus Activity and Severity Index; English- speaking adults (≥18 years old) who are diag- CLE, cutaneous lupus erythematosus; DLE, discoid lupus erythematosus; SCLE, subacute CLE. nosed with CLE. Participants were selected as a conven- ience sample and recruited after their standard of care visits, but consideration was given to recruit a represent- for confirmation. Similar qualitative studies exploring ative cohort from the CLE database in terms of sex and patients’ psychosocial concerns included comparable ethnicity. The proportions of sex and race were compa- numbers of subject recruitment.10 12–14 The participants rable with the main database, as seen in table 1. The were presented with the opportunity to answer two ques- average interview length was 17 min. tions verbally in addition to the surveys administered as Sample size determination was based on when no part of the database visit. These database visits occur after novel themes were elicited from additional interviews their standard of care visits.
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