Measuring symptom burden in patients with cancer during a pandemic: the MD Anderson symptom inventory for COVID-19 (MDASI-COVID)

Loretta A Williams; Meagan S Whisenant; Tito R Mendoza; Angela E Peek; Donna Malveaux; Donna K Griffin; Darcy A Ponce; Bruno Palma Granwehr; Ajay Sheshadri; Katherine A Hutcheson; Sara M Ali; Susan K Peterson; John V Heymach; Charles S Cleeland; Ishwaria M Subbiah

doi:10.1186/s41687-023-00591-x

Measuring symptom burden in patients with cancer during a pandemic: the MD Anderson symptom inventory for COVID-19 (MDASI-COVID)

J Patient Rep Outcomes. 2023 May 26;7(1):48. doi: 10.1186/s41687-023-00591-x.

Authors

Affiliations

¹ Department of Symptom Research, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Boulevard, Unit 1450, Houston, Texas, 77030, USA. loriwilliams@mdanderson.org.
² Department of Behavioral Science, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Blvd, Unit 1330, Houston, TX, 77030, USA.
³ Office of Patient-Centered Research Outcomes, Center for Cancer Research, National Cancer Institute, Bldg. 82, Rm. B03A, Bethesda, MD, 20892, USA.
⁴ Department of Electronic Health Record Ambulatory Access & Revenue, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Boulevard, Unit 1746, Houston, TX, 77030, USA.
⁵ Department of Symptom Research, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Boulevard, Unit 1450, Houston, Texas, 77030, USA.
⁶ Department of Infectious Diseases, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Boulevard, Unit 0402, Houston, TX, 77030, USA.
⁷ Department of Pulmonary Medicine, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Boulevard, Unit 1462, Houston, TX, 77030, USA.
⁸ Department of Head & Neck Surgery, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Boulevard, Unit 1445, Houston, TX, 77030, USA.
⁹ Department of Electronic Health Record Analytics & Reporting, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Boulevard, Unit 1747, Houston, TX, 77030, USA.
¹⁰ Department of Behavioral Science, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Boulevard, Unit 1330, Houston, TX, 77030, USA.
¹¹ Department of Thoracic-Head & Neck Medical Oncology, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Boulevard, Unit 0432, Houston, TX, 77030, USA.
¹² Symptom Assessment Systems LLC, 1416 Marconi St., Houston, TX, 77019, USA.
¹³ Sarah Cannon Research Institute, 1100 Dr. Martin L. King Jr. Blvd., Suite 800, Nashville, TN, 37203, USA.

Abstract

Background: Symptom expression in SARS-CoV-2 infection (COVID-19) may affect patients already symptomatic with cancer. Patient-reported outcomes (PROs) can describe symptom burden during the acute and postacute stages of COVID-19 and support risk stratification for levels of care. At the start of the COVID-19 pandemic, our purpose was to rapidly develop, launch through an electronic patient portal, and provide initial validation for a PRO measure of COVID-19 symptom burden in patients with cancer.

Methods: We conducted a CDC/WHO web-based scan for COVID-19 symptoms and a relevance review of symptoms by an expert panel of clinicians treating cancer patients with COVID-19 to create a provisional MD Anderson Symptom Inventory for COVID-19 (MDASI-COVID). English-speaking adults with cancer who tested positive for COVID-19 participated in the psychometric testing phase. Patients completed longitudinal assessments of the MDASI-COVID and the EuroQOL 5 Dimensions 5 Levels (EQ-5D-5L) utility index and visual analog scale, which were presented through an electronic health record patient portal. To test the validity of the MDASI-COVID to distinguish between known groups of patients, we hypothesized that patients hospitalized, including having a hospitalization extended, for COVID-19 versus those not hospitalized would experience higher symptom burden. Correlation of mean symptom severity and interference scores with relevant EQ-5D-5L scores tested concurrent validity. The reliability of the MDASI-COVID was evaluated by calculating Cronbach alpha coefficients and test-retest reliability was evaluated by calculating Pearson correlation coefficients between the initial assessment and a second assessment no more than 14 days later.

Results: The web-based scan found 31 COVID-19-related symptoms; rankings of a 14-clinician expert panel reduced this list to 11 COVID-specific items to be added to the core MDASI. Time from literature scan start in March 2020 to instrument launch in May 2020 was 2 months. Psychometric analysis established the MDASI-COVID's reliability, known-group validity, and concurrent validity.

Conclusions: We were able to rapidly develop and electronically launch a PRO measure of COVID-19 symptom burden in patients with cancer. Additional research is needed to confirm the content domain and predictive validity of the MDASI-COVID and define the symptom burden trajectory of COVID-19.

Keywords: COVID-19; Cancer; Electronic patient-reported outcomes; Quality of life; Symptom burden; Symptoms.

MeSH terms

Adult
COVID-19* / diagnosis
Humans
Neoplasms* / complications
Pandemics
Reproducibility of Results
SARS-CoV-2