gms | German Medical Science

Introduction: Individuals suffering from Post-COVID Syndrome (PCS) experience substantial limitations in their daily lives. They often report prolonged symptoms, highlighting the importance of research regarding the long-term course of PCS. The PCS-Registry of the German study for digital health research (DigiHero) aims to longitudinally survey respondents with PCS to assess their complaints and therapeutic interventions sought, among other aspects.

Methods: DigiHero participants who report long-term complaints following their SARS-CoV-2 infection are included in the Post-COVID registry. They are surveyed every six months via an online questionnaire until they state no longer experiencing COVID-related complaints. In the second follow-up survey within the registry, treatment sources (general practitioner [GP], specialist, psychotherapist, PCS-outpatient clinic, rehabilitation facility, hospital, elsewhere) and the perceived respective effectiveness (not at all, a little, moderately, well, very well, (still) uncertain) were assessed. Treatment received “elsewhere” as well as specific therapeutic interventions are recorded via free text fields, which are to be evaluated using content analysis. In addition, factors associated with treatment utilization will be assessed using logistic regression models, considering sex, age, education level, course of acute COVID-19 illness, severity of PCS, and depressive symptoms as independent variables.

Results: Up to March 2024, about 3,200 people who reported PCS have been invited to the second follow-up within the registry and 2,133 responded to the survey. Of those 1,115 (52.3%) still reported PCS, with fatigue (82.8%), rapid exhaustion (78.8%), low performance (76.6%), and concentration problems (72.4%) being the most frequently reported complaints.

Of those with persistent symptoms, 39.3% currently receive some kind of treatment, 23.4% at their GP, 21.5% at a specialist, 11.3% at a psychotherapist, and 12.2% “elsewhere”. A PCS-outpatient clinic was ever visited by 5.7%, 16.2% ever visited a rehabilitation facility due to their PCS.

Of those currently undergoing treatment at their GP (n = 258), 26.4% stated that this was helping them well or very well; while this was the case for 39.0% those seeing a specialist (n = 231), 48.3% of those seeing a psychotherapist (n = 114), and 44.4% of those receiving treatment “elsewhere” (n = 115). Among those who had ever visited a PCS-outpatient clinic (n = 55), 14.6% stated that this helped them well or very well; while this was the case for 45.9% of those who had ever visited a rehabilitation facility due to their PCS (n = 170).

Overall, women with PCS were more likely to seek any type of treatment than men with PCS (41.9% vs. 31.8%).

Conclusion: DigiHero participants who report persistent complaints following their SARS-CoV-2 infection mainly struggle with PCS-related fatigue. About 40% of them are currently seeking treatment, with the greatest perceived treatment effectiveness reported by those seeing a psychotherapist. Analyzing specific therapeutic approaches received and factors associated with utilization will provide deeper insights. Initial findings suggest a higher treatment-seeking tendency among women with PCS compared to men with PCS.

The authors declare that they have no competing interests.

The authors declare that a positive ethics committee vote has been obtained.