Characterizing Neuro-PASC outcome with the mobile Neuro-COVID recovery care companion application, 2026, Lank et al.

[SNT Gatchaman]

Characterizing Neuro-PASC outcome with the mobile Neuro-COVID recovery care companion application

Spoiler: Authors

Lank, Grace K; Budhiraja, Shreya; Gaelen, Jordan I; Mukherjee, Shreya; Singer, Tracey; Venkatesh, Aditi; Jimenez, Millenia; Miller, Janet; Lopez, Melissa; Duax, C J; Blahnik, David; King, Doug; Hanson, Barbara A; Bawa, Aasheeta P; Bharadwaj, Shreyas; Batra, Ayush; Liotta, Eric M; Koralnik, Igor J

BACKGROUND
Long COVID, or post-acute sequelae of SARS-CoV-2 infection (PASC), affects 14 million people in the US. Neurologic manifestations of PASC (Neuro-PASC) are particularly debilitating. However, the evolution of these symptoms and factors associated with recovery are poorly understood. This study aimed to characterize Neuro-PASC symptom evolution using a mobile phone application and assess user experience.

METHODS
The Neuro-COVID Recovery Care Companion (NCRCC) mobile application consists of questionnaires integrated within Northwestern Medicines online MyChart platform which interfaces with the electronic medical record. Neuro-PASC patients completed daily surveys of twelve Neuro-PASC symptoms and their perceived percent recovery compared to their pre-COVID baseline. Patients also completed Patient-Reported Outcomes Measurement Information System (PROMIS) quality-of-life (QoL) surveys and NIH toolbox cognitive assessments at baseline and at 3-month follow up. Participants were retrospectively classified as “Improvers” or “Non-Improvers” based on the slope and range of their percent subjective recovery.

RESULTS
Data from 63 participants presenting an average of 12.7 months after symptom onset were analyzed, including 27 (42.9%) Improvers and 36 (57.1%) Non-Improvers. Fewer women were Improvers (50% vs 75.7%; p = 0.04). Multiple correspondence analysis showed that patients presenting with a constellation of anosmia, dysgeusia, and a lack of insomnia (p = 0.023) were less likely Improvers. Improvers had more fluctuations in their subjective recovery than Non-Improvers with greater mean variance (7.01 vs 3.79; p = 0.0004) and positive recovery slope (5.84 vs 0; p < 0.0001). There were no differences in QoL and cognition at initial assessment, but Improvers showed a trend toward increased processing speed and decreased sleep disturbance after 3 months. Both groups found the NCRCC application easy-to-use, useful, and satisfactory.

CONCLUSIONS
Our findings reveal previously unrecognized fluctuations in subjective recovery of Neuro-PASC, and that women and patients presenting with anosmia and dysgeusia are less likely to improve one year from COVID-19 onset. We found broad alterations in QoL in both groups suggesting that strategies to reduce sleep disturbance and improve cognition may contribute to subjective improvement. Our results suggest similar mobile applications may benefit patients with other ill-defined chronic diseases, by equipping and empowering them on their often windy road to recovery.

Web | DOI | PDF | BMC Neurology | Open Access

 

[SNT Gatchaman]

Neuro-PASC symptoms are known to persist up to 2 years. Further research is needed to decipher NeuroPASC recovery patterns over time, with frequent observations to accurately characterize patients’ lived experience.

This study is also the first-of-its-kind to describe the use of a mobile phone application to evaluate NeuroPASC recovery. This is a notable milestone, as the larger public has shown interest in using digital technologies to advance scientific knowledge of COVID-19 impacts. […] We hope the NCRCC may serve as a model for similar applications to define recovery from other chronic conditions, equipping and empowering patients on the long and often windy road to recovery.

Only 49% of participants who enrolled completed the study.

Our result is not unexpected as Neuro-PASC patients suffer from fatigue and cognitive difficulties, which correlates with an increased study dropout rate. Participants cited exhaustion secondary to Neuro-PASC-related fatigue, difficulty looking at screens, and experiencing a plateau in their recovery score as reasons for their discontinued or reduced engagement with the NCRCC application.

Other possibilities for decreased engagement with the application include that patients who improve may eventually feel they no longer need to track their experiences, or that patients’ frustration caused by their lack of recovery may lead them to abandon the application.

 

[SNT Gatchaman]

Strange to see what they framed as "non-neurological" compared with other publications with functional everything eg "disorders of gut-brain interaction" —

The most common non-neurologic symptoms included fatigue (95.2%), depression/anxiety (87.3%), insomnia (58.7%), pain other than chest (57.1%), shortness of breath (50.8%), chest pain, 39.7%, gastrointestinal symptoms (nausea, vomiting, diarrhea; 39.7%), with no differences between the two groups

 

[rvallee]

Our results suggest similar mobile applications may benefit patients with other ill-defined chronic diseases, by equipping and empowering them on their often windy road to recovery.

That is such an odd thing to put in the conclusion. It certainly can be useful as a tracking tool but that's unrelated to "equipping and empowering them on their often windy road to recovery". The usefulness is mainly for professionals doing research, and even then that usefulness is mostly wasted.

Still a small study. Lots of dropouts and low engagement. I have yet to see a professional symptoms study even half as good as the Body Politic studies published in 2020, which were far more comprehensive, had more subjects and was far more in-depth, despite being entirely preliminary.

In fact it remains that aside from a few biomedical studies, the medical profession with all the billions spent on things dealing with Long Covid has not actually come up with anything that wasn't known by 2021, most of it known for decades. Literally nothing. I don't understand the complete indifference to that. The systems of medicine are completely incapable of even getting started doing something useful.