Patient Survey Leads to Better Understanding of Digital Health Preferences in Fibromyalgia

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Common themes included preferring a standard list of symptoms, active training programs, and the desire for community.

Patient Survey Leads to Better Understanding of Digital Health Preferences in Fibromyalgia

Marc Blanchard, MSc

Credit: LinkedIn

Surveys given to patients with post-viral fibromyalgia helped to guide the development of a patient-centric digital health solution app, according to data presented at the American College of Rheumatology’s 2023 Convergence in San Diego, California.1 In addition to the surveys, a usability testing component was able to identify issues regarding the onboarding process. Investigators believe future research investigating the impact of onboarding on patient adoption and enhancement of patient engagement is necessary.

Patient-reported information is a crucial tool in the management of fibromyalgia and has become increasingly popular in rheumatology in recent years. In a recent interview with HCPLive, John Botson, MD, explained, “Patient-reported outcomes are important…What really ensures the patient stays on treatment is how the patient feels and their quality of life.”2

Post-viral fibromyalgia is a condition that can manifest after a viral infection, such as COVID-19. In fact, recent research has demonstrated roughly 30% of post-COVID-19 patients satisfy the American College of Rheumatology (ACR) diagnostic criteria for fibromyalgia. These patients often experience symptoms including widespread pain, sleep impairment, chronic fatigue, anxiety, and depression.

“Digital health interventions have demonstrated efficacy by providing disease monitoring, management, and multimodal interventions to chronic pain patients,” wrote lead investigator Marc Blanchard, MSc, Centre Hospitalier Universitaire Vaudois (CHUV), Lausanne, Switzerland, and colleagues. “However, the widespread adoption and adherence to these interventions remain an obstacle.”

Investigators used an explanatory study design to develop a patient-centered digital health management app specifically for this population of post-viral fibromyalgia patients. They aimed to accomplish this by performing usability testing and integrating the preferences of patients to enhance the usability of the app and the engagement of users to ultimately improve self-management, patient outcomes, and quality of life.

The patient preference surveys were completed by participants recruited from the post-COVID-19 patients association, “Long-COVID Schweiz.” Usability of the app was tested using a cohort of patients with post-viral fibromyalgia enrolled in the multimodal care program for chronic pain management at the University Hospital of Lausanne, in Switzerland. The survey focused on qualitative preference data regarding the functional design of the app, interactions with the app, type of monitored data, expected content, and patient-reported outcomes. Usability testing data (notes, interviews, and patient feedback) were collected by participants using a prototype.

The app included a “How are you?” section, which collected information on patient-reported outcomes and activity, a “My result” section, which monitored symptom’s activity and health conditions, and an “Act & Advice” section, which offered a personalized training program to users.

A total of 53 patients participated in the preference survey section of the study. Most (90%) preferred a standard symptoms list questionnaire instead of a chatbot to collect their patient-reported outcomes. A longitudinal symptom evaluation is available in the “My result” section of the app. When given the option, most patients preferred active training programs (63%) and information (59%) over gamified and interactive content (15%).

Most (81%) participants explained they wanted their symptoms displayed alongside a benchmark of all other patients to better understand what helped other patients experiencing similar symptoms. Similarly, the majority of patients (63%) were interested in being provided links to patient communities. With this in mind, investigators added an anonymized discussion forum to the app.

Six patients participated in the usability testing portion of the study, of which only 2 demonstrated sufficient understanding of the app’s functionalities and were able to navigate it without additional help. Investigators explained these results highlight the importance of an onboarding process.

References

  1. BlanchardM, Ming AzevedoP, PrétatT, Koller C, et al. From Patient Needs to Platform Design: Using Patient Preference to Guide the Development of a Post-Viral Fibromyalgia Management App. Presented at: American College of Rheumatology Convergence 2023. San Diego, CA. November 10-15, 2023.
  2. Pine, L. (2023b, November 24). John Botson, MD: Pegloticase Plus immunomodulator enhances gout treatment. HCP Live. https://www.hcplive.com/view/john-botson-md-pegloticase-plus-immunomodulator-enhances-gout-treatment
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