Person centered care for patients with long covid

Jako Burgers, Jeroen Gruiskens, Thijs Van Meulenbroek, Annerika Gidding-Slok, Ivan Huijnen, Cynthia Lamper, Jean Muris, Marcia Spoelder-Merkens, Darcy Ummels, Carlijn Wiertz, Thomas Hoogeboom, Jeanine Verbunt

Keywords: Person centered care, long covid, rehabilitation

Background:

In the Netherlands, more than 8 million people have experienced COVID-19. Approximately 200,000 people have persistent symptoms for more than four weeks (long covid). Depending on the complexity of problems and limitations in daily life, the patient is treated by the general practitioner (GP), supplemented with allied healthcare (e.g. physiotherapy, occupational therapy, speech therapy) or specialized rehabilitation care. The effectiveness of these treatments, however, is unknown.

Research questions:

- Is a person centered care program useful in improving participation in society?
- How should a regional interdisciplinary COVID-19 rehabilitation network be designed?

Method:

First, a pragmatic literature review of studies and guidelines available on long covid was performed. Then, we organized five focus groups with patients and four focus groups with healthcare professionals to explore their views and experiences of current healthcare. Both review outcomes and focus groups findings will be used in designing care pathways specified by level of complexity. These pathways will be evaluated in single case experimental design studies (SCEDs).

Results:

The project runs from August 2022 to February 2024. The literature review yielded 53 studies and 3 guidelines (Dutch, NICE, WHO). No studies with high evidence of quality were found. Research on specific rehabilitation programs is lacking. Most guideline recommendations were based on low evidence or expert opinion. Lifestyle advice, support in return to work, and monitoring are recommended in general practice. Patients in focus groups indicated that GPs have little knowledge on long covid. Most rehabilitation treatments included energy management techniques (i.e., pacing) . Patients were satisfied with allied healthcare professionals. Patients and professionals agreed that collaboration and patient involvement in managing care is essential in complex cases.

Conclusions:

Long covid care needs improvement of knowledge and specific recommendations for GPs. Core values (e.g., person centeredness, continuity, and a holistic approach) seem to be essential in supporting patients effectively.

Points for discussion:

Methods for recruitment of GPs and long covid patients

Use of Single Case Experimental Design (SCED) to study effectiveness of person centered care

Research and primary care guidelines on long covid in other countries