How Does Digital Data Help Improve QOL in Patients With Long COVID and Autoimmune Diseases?


Quality of life (QOL) for people living with autoimmune diseases benefits from an integrated approach that considers individual immune system sensitivities and patients’ life circumstances, a new study shows.

An evidenced-based digital care program helped adults with autoimmune disease and related illnesses identify hidden triggers and adopt personalized, nonpharmacological interventions to alleviate their unique set of symptoms, according to findings of a new retrospective study published in RMD Open1.

Results show clinically meaningful and statistically significant improvements in health-related quality of life and a high level of program engagement and adherence.

Prior research suggests that diet, lifestyle, and a host of environmental factors (known as the human exposome) have profound effects on autoimmune onset and activity, the authors wrote. However, the complexity of autoimmune diseases has hampered the development of dietary and behavioral recommendations that are universally beneficial.

“Immune system responses and sensitivities are far too heterogeneous to expect that a statistically significant number of individuals with a certain diagnosis will react similarly,” the study researchers said. Even within the same diagnosis group, there is considerable inconsistency, they added.

Meanwhile, many patients with autoimmune diseases attempt to improve their symptoms through a potentially dangerous trial-and-error process, relying on special diets, dietary supplements, and other environmental and behavioral solutions.

To better understand the benefits of a supervised, evidenced-based approach, investigators analyzed data from 202 patients who participated in a digital care program from April 2020 to June 2022. Seventy-seven percent were female, and the mean age was 46.2 years.

Diagnoses included rheumatoid arthritis (20.1%), long COVID (14.9%), psoriatic arthritis (10.9%), psoriasis (8.9%), systemic lupus erythematosus (6.4%), inflammatory bowel disease (5.9%), multiple sclerosis (5.9%), ankylosing spondylitis (%.4%), and other (23.3%). Some participants reported more than 1 diagnosis, while others who did not have an autoimmune diagnosis (9%) presented with symptoms and syndromes associated with autoimmune diseases, such as fibromyalgia.

The DCP included self-reported, digitally tracked data (self-evidence entered in an adaptive mobile app), and health coaching. In weekly, remote, one-on-one sessions, health coaches identified relationships between the timing of exposomal factors and how patients felt. The information was used to support participants’ decision-making as it related to modifiable factors.

The digital care program is “inherently patient-centric” with participants defining their own goals, in collaboration with their assigned health coach, at the start of the program. The health coach also regularly updated and adapted the app to reflect participants’ evolution in the program.

To calculate impact on quality of life, researchers used National Institutes of Health–supported Patient-Reported Outcomes Measurement Information System (PROMIS) scores. For this study, they assessed ability to participate in social roles and activities, cognitive function, ability to manage symptoms, physical function, anxiety, depression, pain interference, pain intensity, and sleep disturbance. With a personalized platform, participants could conduct experiments to investigate, isolate, and uncover their own unique associations between complex exposomal variables and symptoms.

“The process effectively creates a highly personalized and evolving knowledge base and provides patients an important sense of control over seemingly unpredictable symptoms,” the investigators said.

PROMIS scores were measured at baseline and end of the program. Changes from baseline to end of the program were calculated via standardized T-score. For each domain, a minimal important change was established with descriptive statistics (mean and SD in T-scores) to define thresholds 0.5 SD from the mean.

Study results showed statistically significant improvements in all 10 PROMIS domains analyzed. Further, when participants who scored within normal limits at baseline were excluded, average improvements in the remaining participants exceeded the minimal important change in every domain.

Participants with the least favorable PROMIS scores at baseline experienced the greatest improvements.

The investigators acknowledged study limitations. As a retrospective analysis, their findings were subject to selection and performance biases and exaggeration of effect size. Also, generalizability and external validity of the results were limited by a nonresponse sampling bias. Finally, African American individuals were underrepresented as a percentage of the whole population and with respect to their prevalence of autoimmune diseases.

Despite these limitations, the research demonstrates that a DCP is feasible and acceptable to a wide variety of individuals with autoimmune diseases, related syndromes, and long COVID, the authors concluded.

“The results should act as a catalyst for increased funding and further exploration into the application of personalized trials,” they wrote.

This article originally appeared in AJMC.


1. Bundy N, De Jesus M, Lytle M, Calabrese L, et al. Self-evidence-based digital care programme improves health-related quality of life in adults with a variety of autoimmune diseases and long COVID: a retrospective study. RMD Open. Published online May 16, 2023. doi:10.1136/ rmdopen-2023-003061

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