Reaching out to Patients with Long COVID to Better Understand Their Life Experiences and How to Support Their Recovery: A Patient-Oriented Knowledge Sharing Session

TL;DR

This study explores the experiences of long COVID patients and their satisfaction with a knowledge-sharing session aimed at supporting their recovery.

Contribution

The paper provides insights into patient experiences with long COVID and evaluates a novel patient-oriented knowledge-sharing approach.

Findings

Most participants reported significant impacts on their quality of life due to long COVID symptoms.

Participants found healthcare services from physical therapists and primary care providers helpful.

Patients expressed a desire for specialized clinics and healthcare providers for long COVID.

Abstract

This article reports on participants’ experiences with long COVID-19 (LC) (symptoms, impact, healthcare use, and perceived needs) and satisfaction with a patient-oriented knowledge-sharing session organized by a multidisciplinary team of healthcare professionals, researchers, and a patient partner. Twenty-six participants completed a pre-session survey. On average, they were 21 months post-COVID-19 infection (SD 10.9); 81% of them were female, and 84% were 40+ years old. The main symptoms reported included fatigue (96%), cognitive problems (92%), and general pain or discomfort (40%). More than half of the participants reported that LC has had a significant impact on their health-related quality of life. Eighty-one percent of the participants reported seeking medical help for their LC symptoms and found the services provided by physical therapists, primary care providers, and acupuncturists to be helpful in managing their condition. Participants would like to have access to healthcare providers and clinics specializing in LC. They liked the session and found the information presented useful. This information helps to better understand the experiences of people living with LC and how to support their recovery.