Introduction
The Quality of Care for Patients with Advanced Illness (QCPAI) instrument is a validated Patient-Reported Experience Measure (PREM) designed to comprehensively evaluate the quality of care from the direct perspective of individuals living with advanced, progressive, and life-limiting conditions. Developed through a rigorous five-step process - encompassing scoping reviews, item formulation, forward/backward translations, cognitive debriefing interviews, and expert panel reconciliation - the instrument ensures robust cultural and linguistic equivalence across major populations.
To systematically capture care insights across different clinical settings and milestones, QCPAI features four distinct, conceptually equivalent versions tailored to specific respondents:
1. Patient Self-Completion version (16 Items): Designed for direct self-administration by current patients to capture live, unmediated care insights.
2. Caregiver Proxy version (Current Patient - 16 Items): Completed by family members currently involved in caregiving or supervising care when a patient proxy perspective is needed.
3. Caregiver Deceased Patient version (Bereaved Caregiver - 17 Items):Tailored for retrospective evaluation by bereaved family members reflecting on the last six months of a patient’s life.
4. Healthcare Worker version (17 Items): Structured for clinical staff to evaluate organizational care delivery from their own perspectives.
Covered Aspects of Care
The QCPAI Scale covers the following key aspects of advanced illness care:
- Questions asked
- Goal alignment
- Clear & timely information
- Physical symptoms
- Mental health
- Coordination
- Appropriate medical care
- Time to get appointments
- Waiting area time
- Affordability
- Cleanliness & comfort
- Kindness
- Privacy & self-respect
- Religious/cultural needs
- In-patient visitor access
- Care at places of choce
- Place of death (included in 17-item versions)