Patients, Family Caregivers, and Quality of Chronic Care
Patients, Family Caregivers, and Quality of Chronic Care
Objective Family caregivers often accompany patients to medical visits; however, it is unclear whether caregivers rate the quality of patients' care similarly to patients. This study aimed to quantify the level of agreement between patients' and caregivers' reports on the quality of patients' care and determine how the level of agreement varies by caregiver and patient characteristics.
Design Cross-sectional analysis.
Participants Multimorbid older (aged 65 and above) adults and their family caregivers (n = 247).
Methods Quality of care was rated separately by patients and their caregivers using the Patient Assessment of Chronic Illness Care (PACIC) instrument. The level of agreement was examined using a weighted kappa statistic (Kw).
Results Agreement of caregivers' and patients' PACIC scores was low (Kw = 0.15). Patients taking ten or more medications per day showed less agreement with their caregivers about the quality of care than patients taking five or fewer medications (Kw = 0.03 and 0.34, respectively, P < 0.05). Caregivers who reported greater difficulty assisting patients with health care tasks had less agreement with patients about the quality of care being provided when compared with caregivers who reported no difficulty (Kw = −0.05 and 0.31, respectively, P < .05). Patient–caregiver dyads had greater agreement on objective questions than on subjective questions (Kw = 0.25 and 0.15, respectively, P > 0.05).
Conclusion Patient–caregiver dyads following a more complex treatment plan (i.e. taking many medications) or having more difficulty following a treatment plan (i.e. having difficulty with health care tasks) had less agreement. Future qualitative research is needed to elucidate the underlying reasons patients and caregivers rate the quality of care differently.
There is growing recognition of the need to improve the quality of chronic illness care. An important perspective on the quality of chronic illness care can be provided by those who experience it. Informal caregivers (family and unpaid friends who assist a patient) play an important role in managing patients' health care and often accompany patients to physician office visits. These caregivers are well-positioned to provide additional information on the quality of patients' chronic illness care. However, this perspective has been rarely studied.
Caregivers are typically asked to evaluate the quality of patients' care as a proxy respondent when a patient is unable to respond for themselves. These proxy responses are intended to be interchangeable with patients' ratings. However, several studies have shown that patients and proxies almost never show perfect agreement. The level of agreement between proxies and patients varies across different domains of health and quality of care. For example, proxy and patient responses are more likely to agree on objective and observable phenomena, such as functional impairment and physical symptoms. They are less likely to agree about subjective issues, such as quality of life and satisfaction with overall health care.
Although informative, the research on caregivers as 'proxy respondents' does not tell the whole story about how informal caregivers might respond as 'external-raters' of health care quality. As external-raters, informal caregivers are asked to make their own assessment of the quality of care rather than respond as if they were the patient. Understanding the concordance between caregivers' external rating of the patients' health care quality and the patients' self-rating of quality is particularly important because the patient does not necessarily provide the gold-standard response. In a medically complex older population, with high rates of mild cognitive impairment and dependence on family caregivers, it is possible the caregiver's rating of the quality of care may be more accurate than the patients.
There are a growing number of patient-reported quality-of-care measures being developed and used around the world to improve the quality of chronic illness care. This study aims to expand on this methodology by comparing patients' self-report and their caregivers' external rating of the quality of chronic illness care in the primary care setting. This study will quantify the level of agreement between patients' and caregivers' reports on the quality of the patients' care and to describe how the patient–caregiver level of agreement varies by patient and caregiver characteristics.
Abstract and Introduction
Abstract
Objective Family caregivers often accompany patients to medical visits; however, it is unclear whether caregivers rate the quality of patients' care similarly to patients. This study aimed to quantify the level of agreement between patients' and caregivers' reports on the quality of patients' care and determine how the level of agreement varies by caregiver and patient characteristics.
Design Cross-sectional analysis.
Participants Multimorbid older (aged 65 and above) adults and their family caregivers (n = 247).
Methods Quality of care was rated separately by patients and their caregivers using the Patient Assessment of Chronic Illness Care (PACIC) instrument. The level of agreement was examined using a weighted kappa statistic (Kw).
Results Agreement of caregivers' and patients' PACIC scores was low (Kw = 0.15). Patients taking ten or more medications per day showed less agreement with their caregivers about the quality of care than patients taking five or fewer medications (Kw = 0.03 and 0.34, respectively, P < 0.05). Caregivers who reported greater difficulty assisting patients with health care tasks had less agreement with patients about the quality of care being provided when compared with caregivers who reported no difficulty (Kw = −0.05 and 0.31, respectively, P < .05). Patient–caregiver dyads had greater agreement on objective questions than on subjective questions (Kw = 0.25 and 0.15, respectively, P > 0.05).
Conclusion Patient–caregiver dyads following a more complex treatment plan (i.e. taking many medications) or having more difficulty following a treatment plan (i.e. having difficulty with health care tasks) had less agreement. Future qualitative research is needed to elucidate the underlying reasons patients and caregivers rate the quality of care differently.
Introduction
There is growing recognition of the need to improve the quality of chronic illness care. An important perspective on the quality of chronic illness care can be provided by those who experience it. Informal caregivers (family and unpaid friends who assist a patient) play an important role in managing patients' health care and often accompany patients to physician office visits. These caregivers are well-positioned to provide additional information on the quality of patients' chronic illness care. However, this perspective has been rarely studied.
Caregivers are typically asked to evaluate the quality of patients' care as a proxy respondent when a patient is unable to respond for themselves. These proxy responses are intended to be interchangeable with patients' ratings. However, several studies have shown that patients and proxies almost never show perfect agreement. The level of agreement between proxies and patients varies across different domains of health and quality of care. For example, proxy and patient responses are more likely to agree on objective and observable phenomena, such as functional impairment and physical symptoms. They are less likely to agree about subjective issues, such as quality of life and satisfaction with overall health care.
Although informative, the research on caregivers as 'proxy respondents' does not tell the whole story about how informal caregivers might respond as 'external-raters' of health care quality. As external-raters, informal caregivers are asked to make their own assessment of the quality of care rather than respond as if they were the patient. Understanding the concordance between caregivers' external rating of the patients' health care quality and the patients' self-rating of quality is particularly important because the patient does not necessarily provide the gold-standard response. In a medically complex older population, with high rates of mild cognitive impairment and dependence on family caregivers, it is possible the caregiver's rating of the quality of care may be more accurate than the patients.
There are a growing number of patient-reported quality-of-care measures being developed and used around the world to improve the quality of chronic illness care. This study aims to expand on this methodology by comparing patients' self-report and their caregivers' external rating of the quality of chronic illness care in the primary care setting. This study will quantify the level of agreement between patients' and caregivers' reports on the quality of the patients' care and to describe how the patient–caregiver level of agreement varies by patient and caregiver characteristics.
Source...