Challenges Of Measuring Quality Of Community-Based Programs For Seriously Ill Individuals And Their Families

Published in: Health Affairs, Volume 36, Number 7 (July 2017), pages 1227-1233.doi: 10.1377/hlthaff.2017.0161

Posted on RAND.org on July 19, 2017

by Joan M. Teno, Rebecca Anhang Price, Lena K. Makaroun

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Research Question

  1. What are the challenges in creating and implementing quality of care measures for seriously ill patients?

For many individuals and their families, acknowledging and confronting a serious illness such as cancer or advanced heart failure is a sentinel life event. From a health policy perspective, many individuals confronting such illnesses are high-need, high-cost patients who are increasingly cared for by community-based programs that may have competing goals: improving quality and reducing costs. Providing care to high-need, high-cost patients tests a health care system's ability to coordinate care and adapt to highly variable disease trajectories that could result in improved health for some, sudden and unexpected death for others, and a prolonged period of functional impairment for the majority. With the rapid growth in the number of community-based programs, efforts are needed to ensure transparency and accountability for this vulnerable population. In this article we outline the challenges in measuring quality of care for seriously ill patients, offer potential solutions, and call for new research to produce quality measures that ensure accountability for the care provided to seriously ill individuals and their families.

Key Findings

  • Transparent and accountable payment systems that can help determine value of care are critical to ensuring high-quality care in an environment in which providers profit when less care is provided.
  • Utilization measures can unintentionally limit access to care. Process-based measures can reinforce a "check box" mentality among providers.
  • Measures of patient and family experiences of care are critically important for assessing care of the seriously ill.
  • Quality measures based on care settings reinforce fragmentation of care as opposed to supporting evaluation of the entire patient experience.
  • To prevent bias and unfair comparison across providers, selective enrollment or discharge of patients from programs must be monitored.
  • Sufficient numbers of eligible patients need to be included in quality measures to reliably detect differences among providers.
  • Health care providers can determine and honor care preferences by embracing communication, shared decision making, and advance care planning with patients and/or caregivers.

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