Variation of Quality of Life Data Collection Across INTERMACS Sites

Bhanu P Gupta; Kathleen L Grady; Tim Fendler; Philip G Jones; John A Spertus

doi:10.1016/j.cardfail.2015.11.001

Variation of Quality of Life Data Collection Across INTERMACS Sites

J Card Fail. 2016 May;22(5):323-37. doi: 10.1016/j.cardfail.2015.11.001. Epub 2015 Nov 11.

Authors

Bhanu P Gupta¹, Kathleen L Grady², Tim Fendler³, Philip G Jones³, John A Spertus³

Affiliations

¹ Division of Cardiovascular Diseases, Saint Luke's Mid America Heart Institute, University of Missouri, Kansas City, Missouri. Electronic address: gupta.bhanu@mayo.edu.
² Division of Cardiac Surgery, Department of Surgery, Northwestern University, Chicago, Illinois.
³ Division of Cardiovascular Diseases, Saint Luke's Mid America Heart Institute, University of Missouri, Kansas City, Missouri.

PMID: 26576714
DOI: 10.1016/j.cardfail.2015.11.001

Abstract

Background: Given the importance of patients' health-related quality of life (HRQL) after mechanical circulatory support (MCS) device implantation, the Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS) collects the Kansas City Cardiomyopathy Questionnaire (KCCQ) before and after MCS. The success of data collection and potential implications of missing data on HRQL analyses are unknown.

Methods: We examined the frequency and reasons for not collecting baseline and 3-month KCCQ data across INTERMACS sites from May 2012 to December 2013. Hierarchical logistic regression was used to examine site variability (median odds ratios [MOR]) for not collecting KCCQ data to demonstrate the degree to which some sites can collect more complete data than others.

Results: Among 3960 and 3523 patients participating in INTERMACS before and 3 months after left ventricular assist device implantation, the KCCQ was not collected in 43.1% at baseline (range across sites, 0-100%) and 40.9% (range, 0-100%) at follow-up. The most common reasons for incomplete KCCQ data at baseline were that the patient was too sick (13.9%) and consent to participate in research was not obtained (12.4%). Significant variation across sites was observed for missingness because of patient (MOR, 2.8; P < .001) and administrative (MOR, 4.8; P < .001) reasons. The most variable patient reasons were that the patients were too stressed (MOR, 7.2; P < .001) and too busy (MOR, 10.6; P < .001). The most variable administrative reasons were that the coordinator was too busy/forgot (MOR, 7.1; P < .001) and miscellaneous reasons (MOR, 8.7; P < .001). At 3 months, significant variation persisted for both patient (MOR, 2.7; P < .001) and administrative (MOR, 3.5; P < .001) reasons. The most variability across sites was that the patient was too busy (MOR, 6.0, P < .001) and that the coordinator was too busy/forgot (MOR, 5.8; P < .001).

Conclusions: Sites vary substantially in collecting KCCQ data, and many of these variations seem addressable. Improving the consistency of HRQL data collection can improve the value of INTERMACS in defining the patient-centered benefits of MCS treatment.

Keywords: Health-related quality of life (HRQL); INTERMACS; Kansas City Cardiomyopathy Questionnaire (KCCQ).

MeSH terms

Adult
Aged
Aged, 80 and over
Data Collection / standards
Data Collection / statistics & numerical data*
Female
Guideline Adherence / statistics & numerical data
Health Status
Heart Failure / epidemiology
Heart Failure / surgery*
Heart-Assist Devices / statistics & numerical data*
Humans
Male
Middle Aged
Patient Compliance / statistics & numerical data
Quality of Life*
Registries / standards
Registries / statistics & numerical data
Surveys and Questionnaires / standards
United States / epidemiology
Young Adult