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Implementation of patient-reported outcome measures in a heart transplant recipient registry: First step toward a

Redouane Mahmoudi1, Tiphaine Moitie1, Richard Dorent1,2

  • 1Direction médicale et scientifique, Agence de la biomédecine, Saint Denis La Plaine, France.

Clinical Transplantation
|June 1, 2022
PubMed

Insights

This study reviewed patient-reported outcome measures (PROMs) for heart transplant (HTX) recipients to identify the best tools for measuring health-related quality of life (HR-QoL) and medication adherence. Findings highlight the need for improved PROMs to better capture patient experiences post-transplant.

Area of Science:

  • Cardiology
  • Transplantation Medicine
  • Health Outcomes Research

Background:

  • Heart transplantation (HTX) improves survival and quality of life for end-stage heart failure patients.
  • No international consensus exists on preferred patient-reported outcomes (PROs) and measures (PROMs) for heart transplant recipients.
  • Identifying optimal PROMs is crucial for evaluating patient well-being and treatment adherence post-transplant.

Purpose of the Study:

  • To systematically review existing PROMs developed and used in heart transplant patients.
  • To identify instruments most appropriate for measuring health-related quality of life (HR-QoL) and adherence to immunosuppressive medications.
  • To lay the groundwork for developing a patient-centered PROM for heart transplant recipients.

Main Methods:

  • Systematic literature search of the PubMed database for studies assessing PROMs in heart transplant patients.
  • Analysis of 102 articles with various study designs (cross-sectional, longitudinal, mixed-methods) and 6 literature reviews.
  • Categorization of 115 identified PROMs into generic, domain-specific, heart disease-specific, and heart transplant-specific instruments.

Main Results:

  • A wide array of 115 PROMs were identified across 102 studies.
  • PROMs covered diverse dimensions of HR-QoL and immunosuppressive drug experience.
  • Instruments varied significantly in item count, scale types, and psychometric properties.

Conclusions:

  • Existing PROMs for heart transplantation can be enhanced to better meet patient expectations.
  • Future PROMs should incorporate broader aspects of patient experience, including coping, social factors, and spirituality.
  • Improvements in ease of use, reliability, validity, and integration of new technologies are recommended for future PROM development.
Abstract

Keywords:
HR-QoLPROMheart transplantationpatient-reported outcomesquality of life

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