Do patients and their family caregivers agree about delivery of the chronic care model? Evidence from primary care setting using the Patient Assessment of Chronic Illness Care (PACIC) instrument

The recent adaptation of the chronic care model extends the focus of care to both patients and their families, and highlights the important role of family caregivers in the care of multimorbid older adults. The Patient Assessment of Chronic Illness Care (PACIC) instrument collects patient reports of the frequency with which they received specific actions and care during the past six months that are congruent with the Chronic Care Model. However, to our knowledge there is no comparable family caregiver-reported instrument to assess the quality of care from the caregiver's perspective. Our objective was to measure agreement between patients and their family caregiver on assessment of chronic illness care for medically complex older patients using the PACIC instrument. We conducted a cross-sectional secondary data analysis of baseline data on older adults (65+) with multimorbidity and their family caregivers (n=308) who enrolled in an ongoing RCT of Guided Care. Both patients and their caregivers were administered the PACIC. To ensure caregiver knowledge about patient care, we modified the caregiver PACIC to include a “don't know” response and only caregivers who could answer all 20 items on the PACIC scale were included in the analysis (N=189). Agreement was first measured using correlation between caregivers and patients on the 5-pt scale across all 20 items and within each subscale [patient activation (PA), delivery system design and decision support (DS), goal setting and tailoring (GS), problem solving (PS), and follow-up and coordination (FU)]. Overall correlation between patients and caregivers was 0.37; correlation was highest for the GS subscale (r=0.38) and lowest for the PA subscale (r=0.20). Agreement was also measured using binary scale (combining responses into a low frequency group and high frequency group). Observed agreement across all 20 items was 68.7% with a kappa statistic of 0.26 suggesting low agreement between patients and caregivers. Several caregiver characteristics were associated with slightly (but not significantly) greater agreement including being an adult child caregiver, providing more than 20 hours of care, and not co-residing with the patient. These results suggest that patients and caregivers show significant disagreement about the delivery of care congruent with the Chronic Care Model. Further research is needed to determine the underlying sources of this disagreement. Researchers should take this disagreement into account when using proxy PACIC responses in evaluation and analysis.