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Table 3 Active surveillance survey content

From: Tracking the burden, distribution, and impact of Post-COVID conditions in diverse populations for children, adolescents, and adults (Track PCC): passive and active surveillance protocols

Survey sections

Instruments and citations

History of acute COVID-19 symptoms

Adapted from other instruments

Ongoing and new symptoms—symptom groups

 General

Adult—PROMIS Global Health v1.2a

Pediatric – PROMIS Proxy Scale v1.0b

 Energy level, memory, and balance

Adapted from other instruments

 Digestive, ear, eye

Adapted from other instruments

 Heart

Adapted from other instruments

 Other

Adapted from other instruments

 Well-being and mood

Adult/Pediatric—Warwick-Edinburgh Mental Well-being Scale (WEMWBS)c,d

Symptom-specific assessments

 Fatigue

Adult—PROMIS Fatigue 4ae

Pediatric – PROMIS Fatigue 10af

 Physical function

Adult—PROMIS Physical Function Short Form 4ag

 Cognitive function

PROMIS Cognitive Function 6ah

 Impairment

Adult – World Health Organization Disability Assessment Schedule (WHODAS)i

 Impact on work/school activites

PROMIS Satisfaction with Social Roles and Activities SF 4aj

Demographics (at 3-month baseline)

Adapted from other instruments

New COVID-19 illnesses (at follow-up)

Adapted from other instruments

New Medical Conditions (at follow-up)

Adapted from other instruments

  1. General wellbeing assessment
  2. aAdult – PROMIS Global Health v1.2 – Hays RD, Bjorner, J, Revicki RA, Spritzer KL, & Cella, D. Development of physical and mental health summary scores from the Patient Reported Outcomes Measurement Information System (PROMIS) global items. Qual Life Res. 2009;18(7):873–80
  3. bPediatric – PROMIS Proxy Scale v1.0 – Forrest C, Tucker C, Ravens-Sieberer U, Pratiwadi R, Moon J, Teneralli R, et al. Concurrent Validity of the PROMIS® Pediatric Global Health Measure. Qual Life Res. 2015;25(3):739–51
  4. Mental wellbeing
  5. cAdult – Marmara J, Zarate D, Vassallo J, Patten R, Stavropoulos V. Warwick Edinburgh Mental Well-Being Scale (WEMWBS): measurement invariance across genders and item response theory examination. BMC Psychol. 2022 Feb 18;10(1):31. https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s40359-022-00720-z. PMID: 35183262; PMCID: PMC8857792
  6. dPediatric – Clarke A, Friede T, Putz R. et al. Warwick-Edinburgh Mental Well-being Scale (WEMWBS): Validated for teenage school students in England and Scotland. A mixed methods assessment. BMC Public Health. 2011;11:487. https://doiorg.publicaciones.saludcastillayleon.es/10.1186/1471-2458-11-487
  7. Fatigue assessment
  8. eAdult – PROMIS Fatigue 4a – Lai JS, Cella D, Choi SW, Junghaenel DU, Christodoulou C, Gershon R, & Stone A. How Item Banks and Their Application Can Influence Measurement Practice in Rehabilitation Medicine: A PROMIS Fatigue Item Bank Example. Archives of Physical Medicine and Rehabilitation. 2011;92(10 Supplement):S20-S27
  9. fPediatric – PROMIS Fatigue 10a – Sommer A, Grothus S, Grochowska K. et al. Assessing fatigue in children and adolescents: Psychometric validation of the German version of the PROMIS® Pediatric Short Form v2.0—Fatigue 10a in school children and pediatric chronic pain patients. Qual Life Res. 2022;31:1257–66. https://doiorg.publicaciones.saludcastillayleon.es/10.1007/s11136-021-03032-8
  10. Physical function assessment
  11. gAdult – PROMIS Physical Function Short Form 4a—Jensen RE, Potosky AL, Reeve BB, Hahn E, Cella D, Fries J, Smith AW, Keegan TH, Wu XC, Paddock L, Moinpour CM. Validation of the PROMIS physical function measures in a diverse US population-based cohort of cancer patients. Qual Life Res. 2015 Oct;24(10):2333–44. https://doiorg.publicaciones.saludcastillayleon.es/10.1007/s11136-015-0992-9. Epub 2015 May 3. PMID: 25935353; PMCID: PMC5079641
  12. Cognitive function assessment
  13. hAdult/Pediatric – PROMIS Cognitive Function 6a—Lai JS, Wagner LI, Jacobsen PB, & Cella D. Self-Reported Cognitive Concerns and Abilities: Two Sides of One Coin? Psycho-Oncology. 2014;23(10):1133–41.  https://doiorg.publicaciones.saludcastillayleon.es/10.1002/pon.3522
  14. Impairment questionnaire
  15. iMeasuring Health and Disability: Manual for WHO Disability Assessment Schedule (WHODAS 2.0) / edited by TB Üstün, N Kostanjsek, S Chatterji, J Rehm. https://iris.who.int/bitstream/handle/10665/43974/9789241547598_eng.pdf?sequence=1
  16. Impact on work/school activities
  17. jCella D, Choi SW, Condon DM, Schalet B, Hays RD, Rothrock NE, Yount S, Cook KF, Gershon RC, Amtmann D, DeWalt DA, Pilkonis PA, Stone AA, Weinfurt K, Reeve BB. PROMIS® Adult Health Profiles: Efficient Short-Form Measures of Seven Health Domains. Value in Health. 2019;22(5):537–44
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