Efficient measurement of multiple ventricular assist device patient-reported outcomes: Creation of a 20-item profile from the MCS A-QOL study

Kathleen L Grady; Michael A Kallen; David Cella; Larry A Allen; JoAnn Lindenfeld; Colleen K McIlvennan; David G Beiser; Mary Norine Walsh; Quin E Denfeld; Christopher S Lee; Bernice Ruo; Catherine Murks; Josef Stehlik; James K Kirklin; Jeffrey Teuteberg; Eric Adler; Michael Kiernan; Jonathan Rich; Katy Bedjeti; Elizabeth A Hahn

doi:10.1016/j.healun.2024.04.060

Efficient measurement of multiple ventricular assist device patient-reported outcomes: Creation of a 20-item profile from the MCS A-QOL study

J Heart Lung Transplant. 2024 Apr 29:S1053-2498(24)01635-8. doi: 10.1016/j.healun.2024.04.060. Online ahead of print.

Authors

Kathleen L Grady¹, Michael A Kallen², David Cella², Larry A Allen³, JoAnn Lindenfeld⁴, Colleen K McIlvennan³, David G Beiser⁵, Mary Norine Walsh⁶, Quin E Denfeld⁷, Christopher S Lee⁸, Bernice Ruo⁹, Catherine Murks¹⁰, Josef Stehlik¹¹, James K Kirklin¹², Jeffrey Teuteberg¹³, Eric Adler⁹, Michael Kiernan¹⁴, Jonathan Rich¹⁵, Katy Bedjeti², Elizabeth A Hahn²

Affiliations

¹ Department of Surgery, Northwestern University, Feinberg School of Medicine, Chicago, Illinois. Electronic address: kgrady@nm.org.
² Department of Medical Social Sciences, Northwestern University, Feinberg School of Medicine, Chicago, Illinois.
³ Department of Medicine, University of Colorado School of Medicine, Aurora, Colorado.
⁴ Department of Medicine, Vanderbilt University, Nashville, Tennessee.
⁵ Section of Emergency Medicine, University of Chicago, Chicago, Illinois.
⁶ Ascension St. Vincent Heart Center, Indianapolis, Indiana.
⁷ School of Nursing, Oregon Health & Science University, Portland, Oregon.
⁸ School of Nursing, Boston College, Chestnut Hill, Massachusetts.
⁹ Department of Medicine, University of California-San Diego, La Jolla, California.
¹⁰ Department of Medicine, University of Chicago, Chicago, Illinois.
¹¹ Department of Medicine, University of Utah, Salt Lake City, Utah.
¹² Kirklin Solutions, Hoover, Alabama.
¹³ Department of Medicine, Stanford University, Stanford, California.
¹⁴ Department of Medicine, Tufts University, Boston, Massachusetts.
¹⁵ Department of Medicine, Northwestern University, Feinberg School of Medicine, Chicago, Illinois.

PMID: 38692444
DOI: 10.1016/j.healun.2024.04.060

Abstract

Background: Patient-reported outcome (PRO) measures of distinct concepts are often put together into patient profile assessments. When brief, profile assessments can decrease respondent burden and increase measure completion rates. In this report, we describe the creation of 5 self-reported 4-item short forms and the Mechanical Circulatory Support: Measures of Adjustment and Quality of Life (MCS A-QOL) 20-item profile to assess PROs specific to adjustment and health-related quality of life (HRQOL) among patients who undergo left ventricular assist device (LVAD) implantation.

Methods: Using a cross-sectional sample of patients (n = 620) who underwent LVAD implantation at 12 U.S. sites or participated in the MyLVAD.com support group, we created 5 4-item short forms: Satisfaction with Treatment, ventricular assist device (VAD) Team Communication, Being Bothered by VAD Self-care and Limitations, Self-efficacy Regarding VAD self-care, and Stigma, which we combined into a 20-item profile. Analyses included intercorrelations among measures, Cronbach's alpha (i.e., internal consistency reliability)/score-level-specific reliability, and construct validity.

Results: The 620 patients were mean age = 57 years, 78% male, 70% White, and 56% on destination therapy LVADs. Intercorrelations among the 5 4-item measures were low to moderate (≤0.50), indicating they are associated yet largely distinct, and correlations with calibrated measures and 6-item short forms were ≥0.76, indicating their ability to reflect full-item bank scores. Internal consistency reliability for the 5 4-item short forms ranged from acceptable (≥0.70) to good (≥0.80). Construct validity was demonstrated for these measures.

Conclusions: Our 5 4-item short forms are reliable and valid and may be used individually or together as a 20-item profile to assess adjustment and HRQOL in patients who undergo LVAD implantation.

Keywords: adjustment; health-related quality of life; left ventricular assist device; mechanical circulatory support; patient-reported outcomes.