Research Questions

  1. Which experiences of hospice care are most important to patients and families?
  2. What are the most appropriate and effective procedures for surveying primary caregivers regarding experiences with hospice care?
  3. Which factors need to be taken into account to ensure accurate assessments and comparisons of hospice performance?

The Centers for Medicare & Medicaid Services (CMS) has implemented care experience surveys for a variety of settings but none for hospice care. In September 2012, CMS contracted the RAND Corporation to design and field-test a future Consumer Assessment of Healthcare Providers and Systems (CAHPS®) survey to measure the experiences that patients and their caregivers have with hospice care. The survey was developed to (1) provide a source of information from which selected measures could be publicly reported to beneficiaries and their family members as a decision aid for selection of a hospice program, (2) aid hospices with their internal quality improvement efforts and external benchmarking with other facilities, and (3) provide CMS with information for monitoring the care provided. This report briefly summarizes the work conducted to develop and field-test the new survey, the Hospice Experience of Care Survey (HECS). It provides an overview of the survey development process, describes the field test design and procedures, presents analytic methods and findings from the field test, and presents the final survey instrument for national implementation.

Key Findings

The Survey Field Test Revealed Differences in Response Rates

  • The overall field test response rate was 53.6 percent. Spouses and parents of hospice decedents were more likely to respond than children, those who were mailed the Family Evaluation of Hospice Care (FEHC) survey were less likely to respond, caregivers of older decedents were more likely to respond than those of younger decedents, and caregivers of Hispanic decedents were less likely to respond than those of decedents in other race or ethnicity categories.

The Analysis Identified Nine Measures

  • Psychometric analyses identified six multi-item composites and three single-item indicators: Hospice Team Communication (five items), Getting Timely Care (two items), Treating Your Family Member with Respect (two items), Providing Emotional Support (two items), Getting Help for Symptoms (two items), Hospice Care Training (home setting only) (four items), Information Continuity (1 item), Support for Religious and Spiritual Beliefs (one item), and Understanding the Side Effects of Pain Medication (one item).

An Adjustment Model Is Recommended for National Implementation

  • The recommended case-mix adjustment model includes language of completed survey, decedent age, decedent education, decedent sex, payer type (all categories), primary diagnosis (all categories), respondent age, respondent education, respondent sex, language spoken at home (all categories), relationship to decedent (all categories), and prior receipt of FEHC survey. The model should be further examined and evaluated in national implementation.

Overall, Survey Respondents in the Field Test Seem Satisfied with Hospice Care

  • The mean overall rating of hospice care was 93.0 out of 100. Mean scores for each composite were generally high, ranging from 81.0 for Understanding the Side Effects of Pain Medication and 85.2 for Hospice Care Training to 94.9 for Information Continuity and 95.7 for Treating Your Family Member with Respect.

Table of Contents

  • Chapter One

    Introduction

  • Chapter Two

    Survey Instrument Development

  • Chapter Three

    Field Test Design and Procedures

  • Chapter Four

    Final Survey Instrument

  • Appendix A

    Item Response Rates Among Unit Respondents

  • Appendix B

    Summary of Changes to Field Test Survey

  • Appendix C

    Final English-Language Instrument for 2015 National Implementation of the Consumer Assessment of Healthcare Providers and Systems Hospice Survey

Research conducted by

The research described in this report was sponsored by the Centers for Medicare & Medicaid Services and was produced within RAND Health, a division of the RAND Corporation.

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