Patients, Family Caregivers, and Quality of Chronic Care
Patients, Family Caregivers, and Quality of Chronic Care
From the original 308 patient–caregiver dyads, we excluded patient–caregiver dyads in which the caregiver was a patient–proxy (N = 41). We also excluded dyads in which the patient and/or caregiver had a missing response (no response or 'don't know' response) to 25% or more of the PACIC items (N = 20). The resulting sample size for analysis was 247 patient–caregiver dyads.
The agreement between patients and their caregivers on individual PACIC items is described in Table 1. Kw values were uniformly low, ranging from 0.06 to 0.30. In general, the agreement between patient and caregiver was higher for the objective PACIC items (Kw = 0.25, 95% CI: 0.16 to 0.33) than for the communication items (Kw = 0.17, 95% CI: 0.08 to 0.26) and the subjective items (Kw = 0.15, 95% CI: 0.06 to 0.24). These differences were not significant. Fig. 1 shows the distribution of median respondent scores on the PACIC for patients versus caregivers. The median response across all the PACIC items for patients is shown on y axis versus the corresponding median response of the patient's caregiver on x axis. The scatter plot shows very little agreement between patients and caregivers. The Kw for agreement between patients and caregivers on the overall PACIC was 0.15 (95% CI: 0.06 to 0.24).
(Enlarge Image)
Figure 1.
This scatter plot shows median PACIC response for each patient–caregiver dyad in the sample. The data points are presented with a slight jitter (deviation from absolute value) to allow for easier viewing.
Table 2 displays the level of agreement between caregivers' and patients' aggregate median PACIC scores according to patient characteristics. Only gender and number of medications per week were significantly associated with the level of agreement. Male patients had significantly less agreement with their caregivers (Kw = 0.05, 95% CI: −0.05 to 0.15) than female patients (Kw = 0.24, 95% CI: 0.15 to 0.33). Similarly, patients taking ten or more medications a day had significantly less agreement with their caregivers (Kw = 0.03, 95% CI: −0.11 to 0.17) than patients taking five or fewer medications (Kw = 0.34, 95% CI: 0.17 to 0.51). We also explored the level of agreement by self-reported chronic condition reported in the baseline survey and found no significant differences (data not shown).
Table 3 shows the level of agreement between caregivers' and patients' aggregate median PACIC scores according to caregiver characteristics. Only the level of caregiver HCTD was significantly associated with the level of agreement between patients and caregivers. Caregivers reporting a high level of HCTD had significantly less agreement with patients about the quality of care (Kw = −0.05; 95% CI: −0.22 to 0.10) than caregivers reporting no difficulty (Kw = 0.31, 95% CI: 0.20 to 0.42). Sensitivity analyses using polychoric correlation did not change these results.
Overall, caregivers rated the quality of care more highly than patients (median respondent scores for patients and caregivers were 2 and 2.5, respectively). To further explore the direction of the differences between patients' and caregivers' median scores, we generated histograms of the number of caregivers rating care above and below each median patient response (see Fig. 2). Across all patients, 41.3% (102/247) of caregivers rated care higher than patients and 32.8% (81/247) of caregivers rated care lower than patients. The magnitude of discordant responses between patients and caregivers varied; 25% (82/247) of patient–caregiver dyad responses differed by 2 or more points in median PACIC. Among the 102 caregivers rating care higher than patient, 41 rated care at least 2 points higher than patients. Among the 81 caregivers rating care lower than patients, 21 rated care at least 2 points lower than patients.
(Enlarge Image)
Figure 2.
These histograms show the distribution of difference in median PACIC score (caregiver score–patient score) for different patient median scores. Black bars represent the number of caregiver who rated care more highly than patients (n = 102); gray bars represent caregivers who rated care the same as patients (n = 64) and white bars represent caregivers who rated care as worse than patients (n = 81). PACIC, Patient Assessment of Chronic Illness Care instrument; CG, caregiver; PT, patient.
Results
From the original 308 patient–caregiver dyads, we excluded patient–caregiver dyads in which the caregiver was a patient–proxy (N = 41). We also excluded dyads in which the patient and/or caregiver had a missing response (no response or 'don't know' response) to 25% or more of the PACIC items (N = 20). The resulting sample size for analysis was 247 patient–caregiver dyads.
The agreement between patients and their caregivers on individual PACIC items is described in Table 1. Kw values were uniformly low, ranging from 0.06 to 0.30. In general, the agreement between patient and caregiver was higher for the objective PACIC items (Kw = 0.25, 95% CI: 0.16 to 0.33) than for the communication items (Kw = 0.17, 95% CI: 0.08 to 0.26) and the subjective items (Kw = 0.15, 95% CI: 0.06 to 0.24). These differences were not significant. Fig. 1 shows the distribution of median respondent scores on the PACIC for patients versus caregivers. The median response across all the PACIC items for patients is shown on y axis versus the corresponding median response of the patient's caregiver on x axis. The scatter plot shows very little agreement between patients and caregivers. The Kw for agreement between patients and caregivers on the overall PACIC was 0.15 (95% CI: 0.06 to 0.24).
(Enlarge Image)
Figure 1.
This scatter plot shows median PACIC response for each patient–caregiver dyad in the sample. The data points are presented with a slight jitter (deviation from absolute value) to allow for easier viewing.
Table 2 displays the level of agreement between caregivers' and patients' aggregate median PACIC scores according to patient characteristics. Only gender and number of medications per week were significantly associated with the level of agreement. Male patients had significantly less agreement with their caregivers (Kw = 0.05, 95% CI: −0.05 to 0.15) than female patients (Kw = 0.24, 95% CI: 0.15 to 0.33). Similarly, patients taking ten or more medications a day had significantly less agreement with their caregivers (Kw = 0.03, 95% CI: −0.11 to 0.17) than patients taking five or fewer medications (Kw = 0.34, 95% CI: 0.17 to 0.51). We also explored the level of agreement by self-reported chronic condition reported in the baseline survey and found no significant differences (data not shown).
Table 3 shows the level of agreement between caregivers' and patients' aggregate median PACIC scores according to caregiver characteristics. Only the level of caregiver HCTD was significantly associated with the level of agreement between patients and caregivers. Caregivers reporting a high level of HCTD had significantly less agreement with patients about the quality of care (Kw = −0.05; 95% CI: −0.22 to 0.10) than caregivers reporting no difficulty (Kw = 0.31, 95% CI: 0.20 to 0.42). Sensitivity analyses using polychoric correlation did not change these results.
Overall, caregivers rated the quality of care more highly than patients (median respondent scores for patients and caregivers were 2 and 2.5, respectively). To further explore the direction of the differences between patients' and caregivers' median scores, we generated histograms of the number of caregivers rating care above and below each median patient response (see Fig. 2). Across all patients, 41.3% (102/247) of caregivers rated care higher than patients and 32.8% (81/247) of caregivers rated care lower than patients. The magnitude of discordant responses between patients and caregivers varied; 25% (82/247) of patient–caregiver dyad responses differed by 2 or more points in median PACIC. Among the 102 caregivers rating care higher than patient, 41 rated care at least 2 points higher than patients. Among the 81 caregivers rating care lower than patients, 21 rated care at least 2 points lower than patients.
(Enlarge Image)
Figure 2.
These histograms show the distribution of difference in median PACIC score (caregiver score–patient score) for different patient median scores. Black bars represent the number of caregiver who rated care more highly than patients (n = 102); gray bars represent caregivers who rated care the same as patients (n = 64) and white bars represent caregivers who rated care as worse than patients (n = 81). PACIC, Patient Assessment of Chronic Illness Care instrument; CG, caregiver; PT, patient.
