Developing patient-reported measures of serious illness care quality: synthesis of input from patients, family caregivers, health care professionals, and other experts

Experts have highlighted the need for standardized measures of patient and family experiences of serious illness care. To address this need, we developed surveys that can be used to derive patient-reported quality measures for use in assessment of home-based serious illness programs and community-based serious illness care. In preparation for field testing of draft patient survey instruments, we conducted an environmental scan of existing surveys and measures; convened an expert panel of primary care providers, survey research experts, patient representatives, leaders of serious illness programs, stakeholder organizations, and accrediting groups; conducted in-depth interviews with 23 seriously ill individuals and/or their family caregivers and 9 health care providers; and refined draft survey instruments via multiple rounds of cognitive interviews with 53 seriously ill individuals and/or their family caregivers. Expert panelists and in-depth interviewees agreed that the following core aspects of serious illness care were priorities for a patient survey: communication, access and responsiveness, shared decision making and advance care planning, symptom management, care continuity and coordination, emotional and spiritual support, attention to social determinants of health (through referrals and connections to resources), attention to caregiver needs, and medication management. Based on cognitive testing, survey wording was simplified (e.g., “health care options if you got sicker” for advance care planning, avoidance of terms like “coordinate”), items were reworded to encompass both telehealth and in-person visits, and the term “health care professionals” was finalized for assessment of community-based care. Through engagement of seriously ill individuals, family caregivers, and providers, we identified high-priority concepts for assessment in the Serious Illness Surveys for Home-Based Programs and Community-Based Care, allowing for collection of actionable information to inform quality monitoring and improvement.