Session Information
Date: Sunday, November 8, 2015
Session Title: Health Services Research I: Digital Health and Patient, Provider Factors in Rheumatic Disease
Session Type: ACR Concurrent Abstract Session
Session Time: 2:30PM-4:00PM
Background/Purpose: SLE patients face many challenges due to lupus, including pain, fatigue, managing medications and appointments, and emotional impact. Patients employ various strategies to manage these challenges. mHealth offers the opportunity to improve self-management and self-efficacy and could prove effective in helping SLE patients manage their disease. Patient input is critical to the development of an SLE-specific mHealth tool; our aim was to explore patient preferences and interest related to development of an mHealth app for SLE patients.
Methods: Subjects ≥15 years old who met ACR SLE criteria were recruited from a diverse patient population at a large, urban SLE referral center. A standardized focus group methodology was developed by an expert panel of rheumatologists and social workers. Focus group sessions, moderated by clinical social workers trained in this methodology, were audio recorded, transcribed, and analyzed using NVivo in an iterative process to develop thematic categories. Questions explored challenges due to SLE, current coping strategies, how an SLE app could help with disease self-management, app format and design, and priorities for app content.
Results: 57 subjects participated in 8 focus groups. Participants were mostly female (84%), well-educated (68% had at least some college education), and 46% self-identified as belonging to a minority group. Mean SLEDAI was 3.7 (range 0-10) and mean SLICC-DI was 1.3 (range 0-7). Subjects identified physical manifestations (pain, fatigue, hair loss, change in weight), emotional/psychological issues (stress, frustration, unpredictability of disease, depression), and medications (adherence issues, pill burden) as current challenges in managing lupus; scheduling, exercise, sleep, relaxation, and social networking helped to manage those challenges. Regarding how the app could help, six key themes emerged (Table): 1) track symptoms, 2) manage medications, 3) manage appointments, 4) communicate with providers, 5) nutrition and exercise tips, and 6) manage emotional/psychological issues. Ease of use, simplicity, and customizability were deemed critical to uptake of the app; finger pain, Raynaud’s, denial/avoidance of illness, and technological complexity were identified as potential deterrents to use. 98% of participants said they would use an app to help manage lupus.
Conclusion: Participants were overwhelmingly interested in an mHeatlh app designed to help manage SLE and identified challenges an app could help them manage. These patient-generated themes can be used in platform development and assessment of a lupus-specific mHealth app.
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How an App Can Help: Emerging Themes |
Selected Illustrative Quotes |
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1. Track symptoms |
[You could record] symptoms for the day, because sometimes when I go to the doctor I don’t remember certain symptoms I had during the month and if I have a place to write that down, like how I was feeling certain days, I think it would help. |
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2. Manage medications |
It would be great if you could put in your meds and your doses and time of day and it alerted you like, “Okay, it’s time to take something.” And then also… we’d get to the doctor and they say, “What have you been taking?” It’s like, there. |
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3. Manage appointments |
There are many different aspects of planning…The appointment reminder might be two days before the appointment, because I find that if I don’t write it down, I will forget… I need time to process a day or two before. |
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4. Communicate with providers |
Sometimes when we’re at the appointment, we sometimes forget what was wrong at that moment, so when [the doctors] ask us a question, we’re just like, “Oh, no, no, everything is fine…” and then you leave and remember, “Ok, I should have said this and I should have said that!” |
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5. Nutrition and exercise recommendations |
So…we see what we’re getting in terms of diet and what we’re eating, how it affects the symptoms, that could be helpful, and it would help everybody. |
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6. Resources to manage emotional/psychological issues |
The initial diagnosis can be very traumatic and I think if you have an app that can guide you through processing those emotions as well as learning how to accept help and communicating effectively what the illness does to you, I think it would be a helpful app. |
To cite this abstract in AMA style:
Levine AB, Batterman A, Bykerk V, Crank A, Kim SJ, Kleinman J, Leuenberger L, Robbins L, Rose JA, Salmon JE, Spring N, Tran ML, Horton R. Patient Preferences for the Development of a Mobile Health (mHealth) Application (App) for Systemic Lupus Erythematosus (SLE) Patients: A Qualitative Study [abstract]. Arthritis Rheumatol. 2015; 67 (suppl 10). https://acrabstracts.org/abstract/patient-preferences-for-the-development-of-a-mobile-health-mhealth-application-app-for-systemic-lupus-erythematosus-sle-patients-a-qualitative-study/. Accessed April 13, 2021.« Back to 2015 ACR/ARHP Annual Meeting
ACR Meeting Abstracts - https://acrabstracts.org/abstract/patient-preferences-for-the-development-of-a-mobile-health-mhealth-application-app-for-systemic-lupus-erythematosus-sle-patients-a-qualitative-study/