RAND Serious Illness Survey

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 Surveys to assess the experiences of:

• Individuals who receive care from programs that provide serious illness care in patients’ homes (Serious Illness Survey for Home-Based Programs)
• Community-dwelling individuals who have a broader range of health care providers (Serious Illness Survey for Community-Based Care)

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 Survey for Home-Based Programs); and
• a field test with enrollees of a statewide Medicare Advantage organization (Serious Illness Survey for Community-Based Care).

Serious illness programs, payers, and others can use the Serious Illness Surveys 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. Abridged versions of the surveys can be used if the cost or time of administering the full versions would be prohibitive.

For more information about the Serious Illness Surveys, including questions about how to administer the surveys, please contact seriousillness@rand.org.

Related Publications

Related Research

• CAHPS
• Assessing Care of Vulnerable Elders (ACOVE)