New Primary Health Care Resource for adults with Long COVID

Dr Mona Jeffreys, epidemiologist, and her team from Victoria University of Wellington, have recently published a new Primary Health Care Resource for adults with Long COVID for GP's. The resource was co-designed with people with lived experience of Long COVID and was funded by the Health Research Council of NZ.

Mona spoke at our April Online meeting about how the resource was developed using the Standford model of Design-led Thinking. (The recording of the talk is now available on our YouTube channel.) This co-design approach ensured that patients and researchers were considered as equal partners, that lived experience shaped the content, and that the resulting tool met the needs of patients and health professionals. 

What’s in the Resource?

The resource includes a one-page document that gives a visual overview for diagnosing and managing Long COVID in adults. It has clickable links through to detailed guidance.  

An additional pdf with further readings and resources is also included. Mona has said that this pdf will be easier for the university to maintain going forward, while the overview page is expected to remain static. 

Mona recommended that people use the Post Covid Symptom Map regularly as a way to monitor and share symptoms and severity.

Key findings from the research project

People reported significant impacts of Long COVID on themselves and their families, including: medical dismissal, symptoms framed as psychological, delayed diagnosis, fragmented, confusing care pathways, need to self-advocate and research with limited energy. It is clear that Long COVID affects all aspects of people’s lives.  

How patients changed the resource

The experience of people affected by Long COVID highlighted that the resource must:

• Emphasise pacing, validation, and partnership.

• Frame mental distress as consequence not the cause.

• Warn against graded exercise therapy for people with post-exertional malaise (PEM).

• Highlight that there is no evidence that “brain retraining” can treat a physical condition.

• Emphasise the overlap with ME/CFS, but that other systems and hence symptoms are also prevalent.

Artwork captures the lived experience

Participants were invited to create artwork to explain the impact of Long COVID.  This is an insightful example…

"This is supposed to resemble a teardrop. That's how I feel, that I could just cry all the time.

Around it are all the words that have been taken away from me, like independence, support, job, friends, GP, normal company, hospital, help, acknowledgement, compassion, activities, empathy, socialising, basic needs.

The middle is me with a smiley face hoping one day my life is going to turn back round again." 

For Additional Info

More about the project and copies of all outputs are available at www.wgtn.ac.nz/fehps/centres/health-services-research-centre/recent-projects/evidence-based-management-of-long-covid/management-of-long-covid-in-primary-care