Update of long COVID care pathways and structures

Adobestock-388026518-von-halfpoint2
Research areas: High tech medicine, Rehabilitation and occupational therapy

Project leaders: Sarah Wolf

Project team: Sarah Wolf

Project duration: April 2022 – September 2022
Language: English with German summary

Publication: HTA Project Report No. 135b Update: https://eprints.aihta.at/1408/

 

Background: For about two and a half years, the world has been concerned with the viral disease "severe acute respiratory syndrome coronavirus type 2" (SARS-CoV-2). This infectious disease covers a broad spectrum of severity from asymptomatic to fatal courses. Besides, the duration of the disease and the prevalence of long-lasting symptoms after an acute infection are just as heterogeneous as the course of the disease. In an international comparison, these late effects are most frequently summarised as "long COVID " and "post-COVID". According to the National Institute for Health and Care Excellence (NICE), long COVID includes all symptoms that occur after an acute SARS-CoV-2 infection and cannot be linked to any other cause. A distinction is made between different patient groups depending on the time after disease onset [1]:

  • Ongoing symptomatic COVID-19: Patients with signs and symptoms of COVID?19 from four up to 12 weeks.
  • Post-COVID-19 syndrome: Patients with signs and symptoms that develop during or after an infection consistent with COVID?19 continue for more than 12 weeks and are not explained by an alternative diagnosis.

One to three months after disease onset, the most commonly reported long COVID symptoms include fatigue, shortness of breath and headache. Three to six months later, most patients again report fatigue and respiratory problems, but also cognitive impairment [2,3].

Experts estimated that approximately 10-20 % of those infected with SARS CoV-2 suffer sequelae from acute illness, with higher prevalences expected in hospitalised patients [2-5]. Rough estimates for Austria range from 100,000 to 200,000 long COVID cases in their working-age [6]. Accordingly, long COVID means physical and emotional suffering for those affected and can also be accompanied by financial hardship for the patients and their families, especially when sick leave eligibility expires [6]. For this reason, healthcare politicians need also consider the economic consequences that long COVID may entail (e.g., increased incapacity to work or part-time employees, career changes) [7,8]. With this in mind, planning for care or other support options for long COVID patients is crucial to reduce severe late effects and support the patients' return to "normal" life [7, 8].

Project aims and research questions: This update aims to summarise the current evidence on care pathways and support needs for long COVID patients. The recommendations on care pathways and other support needs for adult long COVID patients and (new) for children and adolescents will be summarised. In addition, the already established long COVID care pathways of selected European countries for adults but also for children and adolescents will be presented. The updated results are intended to support preparations or adaptations in the planning of long COVID healthcare (e.g. primary care, rehabilitation) and social-legal care (e.g. sick leave, vocational reintegration).

An update of the long COVID prevalence figures is NOT part of this report. Furthermore, this update does NOT include an efficacy and safety analysis of the different long COVID treatment or rehabilitation interventions and an analysis of the implementation of long COVID care pathways. Finally, the update also does NOT involve describing the actual long COVID care situation in Austria, as the "Gesundheit Österreich GmbH" is currently working on it.

Accordingly, the following research questions arise from the project aims mentioned above:

  1. What are the new recommendations on long COVID care pathways and other support options for adult patients?
  2. What are the recommendations on long COVID care pathways and other support options for children and adolescent patients, and do they differ from the recommendations for adults?
  3. Are there any newly established long COVID care structures for adult patients in the selected European countries?
  4. What are the existing long COVID care structures for children and adolescents in the selected European countries, and do they differ from the existing systems for adults?

Methods:

Research questions 1 & 2: The AIHTA report on possible long COVID care pathways from October 2021 [9] will be extended with new recommendations on long COVID care pathways for adults and recommendations on long COVID care pathways for children and adolescents. For this purpose, an extensive hand search for guidelines and guidance papers (no standardised clinical guidelines) will be performed.

Research questions 3 & 4: A hand search and contact with experts will be conducted to identify new existing long COVID care structures for adult patients and existing care structures for children and adolescents in the selected European countries.

The new recommendations on long COVID care pathways and further information on already established long COVID care structures will be added to the existing data extraction tables of the report 2021 and subsequently incorporated into the narrative description. In doing so, this update provides an overview of all recommendations on possible long COVID care pathways, as well as on the already established long COVID care structures in the selected European countries. The data extraction tables, the discussion, and the summary will highlight which recommendations on care pathways and which care structures have been newly introduced since August 2021.

All steps (literature selection, data extraction, narrative description) are performed by one author (SW).

Updated inclusion criteria:

Population

Children, adolescents and adults with physical, neurological/cognitive, or psychiatric long COVID symptoms beginning four weeks after the onset of the acute SARS-CoV-2 infection.

Keywords: post-acute COVID condition, long-standing COVID-19 symptoms, post-acute COVID-19 syndrome, chronic COVID-19 syndrome, SARS-CoV-2 long-term sequelae

Intervention

-

Control

-

Outcomes

Research question 1:

  • New recommendations on long COVID care pathways and other support options (e.g., social, financial, legal) for adults
  • Recommendations on long COVID care pathways and other support options (e.g., social, economic, legal) for children and adolescents

Research question 2:

  • Examples of newly introduced long COVID care structures for adults in selected European countries
  • Examples of already established long COVID care structures for children and adolescents in selected European countries

Study design and further references

Research question 1: Guidelines, guidance papers

Research question 2:

  • Same references as for research question 1
  • Websites of, e.g. patient organisations, care centres, social institutions
  • Contacting experts

Publication period

August 2021 until June 2022

Countries

Research question 1: Europe, North America, Australia

Research question 2: e.g. German, Belgium, UK, Italy, Switzerland, Ireland**

Language

German and English

* italics = Changes in inclusion criteria compared to the inclusion criteria from the report (October 2021)

** The European countries with a guideline or guidance paper on long COVID care in German or English are used to answer the second research question.

Timeline:

Period

Tasks

April 2022

Scoping

May 2022
  • Finalise project protocol
  • Hand search for guidelines & websites of care facilities
  • Contacting experts on existing care structures (Belgium, UK, Ireland, Germany, Switzerland, Italy)

June 2022

Literature selection & data extraction

July – August 2022

Writing of the report

September 2022

Internal review and layout

30. September 2022

Publication on the AIHTA website

References:

[1] COVID-19 rapid guideline: managing the long-term effects of COVID-19. NICE: 2020 [updated 18/12/2020]. Available from: https://www.nice.org.uk/guidance/ng188.>

[2] Castanares-Zapatero D., Hanquet G. and Van den Heede K. Epidemiology of long COVID: a pragmatic review of the literature. Belgian Health Care Knowledge Centre, KCE, 2021. Available from: https://kce.fgov.be/sites/default/files/atoms/files/2020-04HSR_LongCOVID_COVID%20Contributions_01022021.pdf.>

[3] Wolf, S. and Erdös, J. for the Belgian Health Care Knowledge Centre (KCE). Epidemiology of long COVID: a preliminary report. Deutsche Kurzfassung zum gleichnamigen KCE-Bericht. AIHTA Projektbericht Nr. 135a; 2021. Wien: Austrian Institute for Health Technology Assessment GmbH.

[4] Davis et al. (2020). Characterising long COVID in an international cohort: 7 months of symptoms and their impact. https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2. Gesehen am 15/04/2021.

[5] Kapeller et al. (2021). Long COVID: Die Krankheit nach der Krankheit. Der Standard. https://www.derstandard.at/story/2000125715604/long-COVID-die-krankheit-nach-der-krankheit. Gesehen am 15/04.2021.

[6] Armutsrisiko Long COVID. Die Zeit. Nr. 9. 24. Februar 2022.

[7] Rayan (2021). As the UK inches towards normality, those with long COVID must not be forgotten. The Guardian. https://amp.theguardian.com/commentisfree/2021/apr/14/long-COVID-uk-impact-society. Gesehen am 15/04/2021.

[8] Living with COVID19 – Second Review. NIHR. 2021. https://evidence.nihr.ac.uk/themedreview/living-with-COVID19-second-review/. Gesehen am 15/04/2021.

[9] Wolf, S. and Erdös, J. Long COVID care pathways: a systematic review. AIHTA Projektbericht Nr.: 135b; 2021.

Wien: HTA Austria – Austrian Institute for Health Technology Assessment GmbH.