Variation of Quality of Life Data Collection Across INTERMACS Sites

Area of Science:

• Cardiology
• Medical Device Research
• Health Outcomes Research

Background:

• Mechanical circulatory support (MCS) is vital for patients with advanced heart failure.
• Assessing health-related quality of life (HRQL) post-MCS is critical for patient-centered care.
• The Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS) collects Kansas City Cardiomyopathy Questionnaire (KCCQ) data to measure HRQL.

Purpose of the Study:

• To determine the frequency and reasons for incomplete KCCQ data collection in INTERMACS.
• To analyze site-level variability in KCCQ data collection success.
• To identify factors contributing to missing HRQL data in MCS patients.

Main Methods:

• Analysis of KCCQ data collection from May 2012 to December 2013 within INTERMACS.
• Examination of baseline and 3-month follow-up data for left ventricular assist device (LVAD) recipients.
• Hierarchical logistic regression to assess site variability (median odds ratios) in data collection.

Main Results:

• Over 40% of patients had missing KCCQ data at baseline and 3 months post-LVAD implantation.
• Common reasons for missing data included patients being too sick, lack of research consent, and busy coordinators.
• Significant site-level variation was observed for both patient-related and administrative reasons for missing data.

Conclusions:

• Substantial site variability exists in KCCQ data collection within INTERMACS.
• Addressing these variations can enhance the consistency and value of HRQL data.
• Improved data collection will better define the patient-centered benefits of MCS.