title: Caregiving at the end of life: Perceptions of health care quality and quality of life among patients and caregivers.
abstract: This study explored the association between perceptions of health care quality and quality of life in patients with advanced metastatic cancer and their informal caregivers (n=39). Patients' and caregivers' perceptions of health care quality, mental health, health-related quality of life, symptoms, and burden were measured. The key findings included the following: 1) patients' mental health and depression scores correlated with those of caregivers, suggesting that the mental health of patients and their caregivers are associated; 2) patients and caregivers shared similar perceptions regarding health care quality; 3) the presence of depression in caregivers correlated with caregivers being less satisfied with the health care being given to their patients (this correlation did not exist for patients, a finding that may be due in part to the protective buffering effect that caregivers provide their patients as illness progresses); and 4) a modified Primary Care Assessment Survey, originally designed for primary care patients, was a useful measure of health care assessment for both patients and caregivers. These data suggest that patients with advanced disease and their caregivers share similar perceptions and evolve as a "unit of care," and caregivers, as unique and important members of the patient's health care team, are also in need of care. When depressed, caregivers may unilaterally lose trust by becoming less satisfied with the quality of health care being provided to their patients.
authors.affiliation: Center for Clinical Bioethics and Department of Internal Medicine, Georgetown University, Washington, DC, USA. flemingd@health.missouri.edu
authors.forename: David A
authors.initials: DA
authors.lastname: Fleming
authors.forename: Vanessa B
authors.initials: VB
authors.lastname: Sheppard
authors.forename: Patricia A
authors.initials: PA
authors.lastname: Mangan
authors.forename: Kathryn L
authors.initials: KL
authors.lastname: Taylor
authors.forename: Michelle
authors.initials: M
authors.lastname: Tallarico
authors.forename: Inez
authors.initials: I
authors.lastname: Adams
authors.forename: Jane
authors.initials: J
authors.lastname: Ingham
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology; D010361:Patients / Q000523:psychology; D011785:Quality Assurance, Health Care; D011788:Quality of Life; D013727:Terminal Care / Q000523:psychology* / Q000592:standards*