Lab results, symptom tracking top list of key metrics among rheumatology patients
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Key takeaways:
- Patients with rheumatic and musculoskeletal diseases rated “knowing when the medication is not working” as highest priority topic.
- Lab results and symptom tracking were rated the most useful potential app features.
The ability to view laboratory results, track symptoms and sharing them with a provider were rated as the most useful potential app functions by patients with rheumatic and musculoskeletal diseases, according to data.
“As patient education continues to transition from paper to online resources, it is important to understand how education and other patient needs could be satisfied in a digital format,” William B. Nowell, MSW, PhD, of the Global Healthy Living Foundation, based in New York, and colleagues wrote in The Journal of Rheumatology.
Members of the research team previously worked to develop PatientSpot, a free app for patients with chronic disease to track symptoms and share data with researchers. For the current analysis, Nowell and colleagues examined what information patients with rheumatic and musculoskeletal diseases (RMDs) view as most important, and what app features they would use.
The researchers recruited 47 adult patients with RMDs to undergo a discussion-based, consensus-generating process called the nominal group technique. A total of six groups — ranging from four to 10 participants each — were asked the question: “In your opinion, what information is most important to know for someone who must live with arthritis?” Participants pooled their responses and then ranked them in order of importance.
The responses were then used to formulate a survey, completed by 805 adults with RMD, asking how important the topics were. The survey also asked participants to rate the importance of 13 app features that were already part of the PatientSpot app or were being considered for future development and implementation, as suggested by patient advocates and clinicians.
Participants for the nominal groups and the survey were recruited via email from three sources — the online patient community CreakyJoints, the PatientSpot registry and from patients treated by providers in the practice-based research network Excellence Network in Rheumatology.
According to the researchers, the educational topics most often rated as “extremely important” in the survey were:
- knowing when medication is not working (87.78%);
- finding the right rheumatologist (84.97%);
- knowing the side effects and interactions of available drugs (84.62%); and
- understanding test results used to monitor the condition (82.06%).
App functions considered useful by most respondents included viewing laboratory results (57.44%), recording symptoms to share with a provider (38.95%) and tracking symptoms or flares over time (43.8%).
“This guidance can be used to create educational and digital support tools to support people living with rheumatic [conditions] during their disease journey and to be responsive to data provided by patients and their doctors,” Nowell and colleagues wrote.
“Additionally, interventions that disseminate the identified educational topics and smartphone app features should be developed and tested,” they added. “Research using these patient-generated topics is warranted to determine whether effective dissemination of patient education using the words and priorities of people living with rheumatic conditions positively affects outcomes, including treatment adherence, quality of life, patient-centeredness and health outcomes.”
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