Journal of Patient Experience (Mar 2021)

Understanding and Being Understood: Information and Care Needs of 2113 Patients With Confirmed or Suspected COVID-19

  • Sarah Houben-Wilke PhD,
  • Jeannet M Delbressine MSc,
  • Anouk W Vaes PhD,
  • Yvonne MJ Goërtz MSc,
  • Roy Meys MSc,
  • Felipe VC Machado MSc,
  • Maarten Van Herck MSc,
  • Chris Burtin PhD,
  • Rein Posthuma MSc, PhD,
  • Frits ME Franssen PhD, MD,
  • Nicole HP van Loon MSc, MD,
  • Bita Hajian PhD, MD,
  • Herman Vijlbrief MSc,
  • Yvonne Spies MSc,
  • Alex van ’t Hul PhD,
  • Daisy JA Janssen PhD, MD,
  • Martijn A Spruit PhD

DOI
https://doi.org/10.1177/2374373521997222
Journal volume & issue
Vol. 8

Abstract

Read online

To become a proactive and informed partner in postacute coronavirus disease 2019 (COVID-19) management, patients need to have the knowledge, skills, and confidence to self-manage COVID-19-related health challenges. Due to several restrictions and consequently social isolation, online platforms and forums where people can share information and experiences became more popular and influential. Therefore, this study aimed to identify perceived information needs and care needs of members of 2 Facebook groups for patients with COVID-19 and persistent complaints in the Netherlands and Belgium and patients with COVID-19 who registered at a website of the Lung Foundation Netherlands. Besides demographics and clinical characteristics, the degree of satisfaction with care during and after the infection as well as satisfaction with available information were assessed. Open text fields revealed specific information needs which were summarized. Patients with confirmed or suspected COVID-19 perceive various unmet needs varying from specific information needs (eg, information about permanent lung damage) to general needs (eg, being heard and understood). These data lead to several recommendations to improve care for patients with COVID-19 and justify further development of online platforms specifically addressing these unmet needs.