Table 3 Included studies mapped against the core outcome set for adults with post-COVID-19 condition [79, 81]
Core outcome | Measurement instrument | Group 1 (n = 3) | Group 2 (n = 4) | Group 3 (n = 3) | Group 4 (n = 5) | Group 5 (n = 1) |
|---|---|---|---|---|---|---|
Physiological or clinical outcomes | ||||||
1. Cardiovascular functioning, symptoms and conditions | Circulation subscale of the Symptom Burden Questionnaire for Long COVID (SBQ-LC) New York Heart Association (NYHA) Functional Class | |||||
2. Fatigue or exhaustion | Fatigue Assessment Scale (FAS) Fatigue Severity Scale (FSS) Functional Assessment of Chronic Illness Therapy – Fatigue (FACIT-F) | • Switzerland_ Zurich Vaccine Cohort (FAS) | • Belgium_COVIMPACT (Visual Analogue Scale for Fatigue) • Germany_NAPKON (Chalder Fatigue Scale, FACIT-F) • Netherlands_RIVM Long COVID (CIS) • Switzerland_1 (FAS) | • Canada_ PC-ICCN (FSS) • Italy_1 (6-min walking) | • Aotearoa New Zealand_Long COVID registry (FAS) | |
3. Pain | Brief Pain Inventory (BPI) | • Germany_NAPKON (DN2, HIT-6) | • Aotearoa New Zealand_Long COVID registry (BPI-SF) | |||
4. Nervous system functioning, symptoms and conditions | Central Sensitization Inventory (CSI) | |||||
5. Cognitive functioning, symptoms and conditions | Cognitive Failures Questionnaire (CFQ) Montreal Cognitive Assessment ‘Blind’ version (MoCA-Blind) | • Germany_ NAPKON (PROMIS Kognition) • Netherlands_ RIVM Long COVID (CFQ) | • Canada_ PC-ICCN (neurological screen) • Italy_ National surveillance (MoCA) | |||
6. Mental functioning, symptoms and conditions | Generalized Anxiety Disorder 7 (GAD-7) PTSD Checklist for DSM5 (PCL-5) | • Switerzerland_ Zurich Vaccine Cohort (DASS21) | • Belgium_ COVIMPACT (GAD-7, PHQ-9, Visual Analogue Scale for Life Satisfaction) • Germany_ NAPKON (GAD_7, Brief Resilience Scale) • Netherlands_ RIVM Long COVID (HADS) • Switerzerland_ Zurich Coronavirus Cohort (DASS21) | • Canada_ PC-ICCN (GAD-7, PCL-5) • Italy_ National surveillance (HADS) | • Aotearoa New Zealand_Long COVID registry (GAD-7, PHQ-9, Kessler Psychological Distress Scale [K10]) | |
7. Respiratory functioning, symptoms and conditionsa | mMRC Dyspnoea Scale | • Switzerland_ Zurich Vaccine Cohort (mMRC) | • Belgium_ COVIMPACT (mMRC) • Germany_ NAPKON (mMRC, PROMIS Dyspnoea) • Netherlands_ RIVM Long COVID (shortness of breath) • Switzerland_ Zurich Coronavirus Cohort (mMRC) | • Netherlands_NIVEL (shortness of breath and influence of shortness of breath on daily life) | • Canada_PC-ICCN (cough visual analogue scale and UCSD-SOBQ) • Italy_National surveillance (mMRC and diffuse capacity for carbon monoxide) | • Aotearoa New Zealand_ Long COVID registry (mMRC) |
8. Post-exertion symptoms | De Paul Symptom Questionnaire (DSQ-PEM) | |||||
Life impact outcomes | ||||||
9. Physical functioning, symptoms and conditions | “Impact on Daily Life” of the Symptom Burden Questionnaire for Long COVID (SBQ-LC) | • Canada_CCAHS (whether symptoms related to COVID-19 limit daily activities) • UK_ONS-CIS (whether symptoms reduce ability to carry out day-to-day activities compared with before they had COVID-19) • Switzerland_ Zurich Vaccine Cohort (impact of symptoms on daily activities and consider self back to pre-infection health status) | • Belgium_ COVIMPACT (Washington City Group (WCG) and Global Activity Limitation Indicator (GALI)) • Germany_ NAPKON (activities of daily living, Barthel index and Clinical Frailty Scale) • Netherlands_ RIVM Long COVID (IPAQ, impact complaints have had on life, control over life, worry about complaints and impact on mood) • Switzerland_ Zurich Coronavirus Cohort (impact of symptoms on daily activities and consider self back to pre-infection health status) | • Netherlands_NIVEL (hours spent seated and participation in activities of moderate to vigorous intensity) | • Canada_PC-ICCN (PHQ-2) • Germany_ABC19 (impact of symptoms on daily life) | • Aotearoa New Zealand_Long COVID registry (C19-YRS) |
10. Work or occupational and study changes | Work Ability Index questionnaire (WAI) Work Productivity and Activity Impairment (WPAI) questionnaire “Your day-to-day work/school?” question item from WHO Global COVID-19 Clinical Platform Case Report Form for Post COVID condition | • Canada_CCAHS (impact of work/school and employment history) • UK_ONS-CIS (current work/education status) | • Belgium_ COVIMPACT (change in employment and income) | • Netherlands_NIVEL (absence from work, impact of COVID on working hours and change in working activities) | • Aotearoa New Zealand_Long COVID registry (work and social adjustment scale [WSAS]) | |
Survival | ||||||
11. Survivala | Time until death | • Sweden_SCIFI-PEARL (cause of death) | ||||
Outcome from previous COS | ||||||
12. Recoverya | Recovery Scale for COVID-19 | |||||
Other PROMs measured not in COS | ||||||
Health-related quality of life | • Switzerland_ Zurich Vaccine Cohort (EQ-5D) | • Belgium_ COVIMPACT (EQ-5D) • Germany_2 (EQ-5D) • Netherlands_ RIVM Long COVID (EQ-5D, RAND-12/SF-12, RAND-36) • Switzerland_1 (EQ-5D) | • Netherlands_NIVEL (SF-12) • Sweden_SCIFI-PEARL (RAND-36) | • Canada_PC-ICCN (EQ-5D) • Germany_ABC19 (EQ-5D) • Italy_National surveillance (EQ-5D) | • Aotearoa New Zealand_Long COVID registry (EQ-5D) | |
Odour and taste | • Netherlands_ RIVM Long COVID (odour and taste capabilities) | |||||
Substance abuse | • Canada_PC-ICCN (CAGE Alcohol Questionnaire) | |||||
Social health | • Belgium_ COVIMPACT (UCLA Three-Item Loneliness Scale) | • Aotearoa New Zealand_Long COVID registry (LCSS) |