RAND Serious Illness Survey

Elderly woman in a wheelchair looking at her caregiver, photo by Squaredpixels/Getty Images

Experts in care of the seriously ill have highlighted the importance of survey-based quality measures that assess the person- and family-centeredness of serious illness care. RAND, supported by funding from the Gordon & Betty Moore Foundation, developed and field-tested the RAND Serious Illness Survey for Home-Based Programs to assess the experiences of patients who receive care from programs that provide serious illness care in patients’ homes. Additional work is underway to test a version of the Serious Illness Survey to assess experiences with a broader range of providers caring for those with serious illness.

Survey Development

RAND researchers developed the Serious Illness Survey for Home-Based Programs based on:

  • a systematic literature review of tools that measure experiences with serious illness care;
  • qualitative interviews with patients, family caregivers, and health care providers from a diverse set of serious illness programs;
  • a technical expert panel composed of experts in serious illness care quality;
  • cognitive interviews with patients and family caregivers to test draft questions and questionnaires; and
  • a field test with patients from thirty-two serious illness programs across the United States.

Serious illness programs, payers, and others can use the Serious Illness Survey for Home-Based Programs to measure patient experiences of care in a standardized manner to inform quality improvement, promote tracking of performance over time, and enable fair comparisons between programs, where appropriate. The abridged version of the survey can be used if the cost or time of administering the full version would be prohibitive.

For more information about the Serious Illness Survey for Home-Based Programs, including questions about how to administer it or how to participate in additional field-testing, please contact seriousillness@rand.org.

Survey Documents

All documents linked below are in PDF format.

Guidelines for Survey Administration and Analysis