Surveys provided by patients with post-viral fibromyalgia helped guide the development of a patient-centered digital health app solution, according to data presented at the 2023 Convergence of the American College of Rheumatology in San Diego. , California.1 In addition to surveys, a usability testing component was able to identify issues regarding the onboarding process. The investigators believe that future research investigating the impact of onboarding on patient adoption and improving patient engagement is warranted.
Patient-reported information is an important tool in the management of fibromyalgia and has become more popular in rheumatology in recent years. In a recent interview with HCPLiveJohn Botson, MD, explained, “Patient-reported outcomes are important … What really ensures that the patient remains in treatment is how the patient feels and their quality of life.”2
Post-viral fibromyalgia is a condition that can appear after a viral infection, such as COVID-19. In fact, new research shows nearly 30% of post-COVID-19 patients meet the American College of Rheumatology (ACR) diagnostic criteria for fibromyalgia. These patients often experience symptoms including widespread pain, sleep disturbances, chronic fatigue, anxiety, and depression.
“Digital health interventions have shown efficacy by providing disease monitoring, management, and multimodal interventions to sick patients,” wrote lead investigator Marc Blanchard, MSc, Center Hospitalier Universitaire Vaudois. (CHUV), Lausanne, Switzerland, and colleagues. “However, widespread adoption and adherence to these interventions remains an obstacle.”
The 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 aim to accomplish this by conducting usability testing and integrating patient preferences to improve app usability and user engagement to ultimately improve self-management, patient outcomes, and quality of life. .
Patient preference surveys were completed by participants recruited from the post-COVID-19 patients association, “Long-COVID Schweiz.” The usability of the app was tested using a group 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 app’s functional design, app interaction, type of monitored data, expected content, and patient-reported outcomes. Usability test data (notes, interviews, and patient feedback) were collected by participants using a prototype.
The app includes a “How are you?” section, which collects information on results and activity reported by the patient, a “My results” section, which monitors symptom activity and health conditions, and an “Act & Advice” section, which offers a personal training program for users.
A total of 53 patients participated in the preference survey section of the study. Most (90%) chose a standard list of symptom questions instead of a chatbot to collect their patient-reported results. A longitudinal symptom assessment is available in the “My results” section of the app. When given the choice, most patients preferred active training programs (63%) and information (59%) over gamified and interactive content (15%).
Most (81%) participants explained that they would like their symptoms displayed alongside a benchmark of all other patients to better understand what has helped other patients experiencing similar symptoms. Similarly, the majority of patients (63%) are interested in being provided with links to patient communities. With this in mind, the investigators added an anonymized discussion forum to the app.
Six patients participated in the usability testing part of the study, of which only 2 showed sufficient understanding of the app’s functions and were able to navigate it without additional assistance. The investigators explained that these results highlight the importance of an onboarding process.