Proxy reports in Parkinson's disease: caregiver and patient self-reports of quality of life and physical activity.

We evaluated patient-proxy agreement in a population of veterans with Parkinson's disease and compared levels of agreement by patient subgroups. Patient and caregiver pairs completed questionnaires composed of standard measures and additional demographic and activity questions. Participants completed the Center for Epidemiologic Studies Depression Scale (CES-D), the PD Questionnaire 39 (PDQ-39), and three questions regarding physical activity. Caregivers completed proxy forms of the PDQ-39 and the physical activity questionnaire. The proxy forms asked caregivers to choose the answers that best described their "friend's/patient's situation." The results of our comparison of patient and proxy reports of quality of life were consistent with findings in other diseases. On average, proxies rated patient disability higher and quality of life lower than did patients. However, our comparison of patient and proxy reports of frequency of exercise diverged from previously published work. Less agreement was observed between patient and proxy reports of physical activity, even though this is a more objective variable than are the domains measured by the PDQ-39. Proxy reports may diverge appreciably from patient self-reports. These differences should be considered in research design and clinical decision making. Alternative approaches to the measurement of patient relevant outcomes could supplement traditional, retrospective self-reports.

A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options.

OBJECTIVE: To compare amyotrophic lateral sclerosis (ALS) patients and their caregivers on measures of quality of life (QOL), depression, and their attitudes toward treatment options. METHODS: Over a 14-month period, we analyzed responses from 27 ALS patients and 19 ALS caregivers as they arrived at the Department of Neurology, Baylor College of Medicine, Vicki Appel MDA, ALS Clinic, and those who completed the study measures. Patients were given the Appel ALS Rating Scale (AALS), the ALS Functional Rating Scale (ALSFRS), McGill Quality of Life Questionnaire Single-Item Scale (MQOL-SIS), and the Beck Depression Inventory-II (BDI-II). An internally generated scale of 1-7 was used to measure perception of emotional support, QOL for others (i.e., the patient's perception of the caregiver's QOL and the caregiver's perception of the patient's QOL), and experience of pain. Attitudes toward treatment options were assessed by yes/no/uncertain responses. Caregivers were administered all of the above measures except the AALS, ALSFRS, and pain scale. Percentage, mean, and standard deviation values were determined. Significance levels were also calculated. RESULTS: Twenty-seven patients with a mean age of 57.2 (range 34-81) years and nineteen caregivers with a mean age of 56.9 (range 28-82) years completed the study. The patients were of moderate disease severity with a mean AALS total score of 76.3 (range 39-134) and a mean ALSFRS score of 28.4 (range 12-40). The mean rating of QOL for patients was 5.9 and the mean rating of QOL for caregivers was 5.7 (range 1-7). The patients reported slightly less depression (9.8) than their caregivers (10.7) (range 0-63). There was, however, no significant difference between patients and caregivers on scores of QOL and depression. Patients tended to overestimate caregivers' QOL by a small degree, whereas caregivers tended to underestimate the patients' QOL by a greater degree. Over one-half of both groups would consider percutaneous esophageal gastrostomy (PEG) placement. Patient and caregiver responses to the use of BIPAP differed. Though over half of both groups endorsed the idea of future BIPAP use, more patients (41%) than caregivers (5%) were uncertain. Only 3% of patients responded negatively compared to 32% of caregivers. Both groups were only minimally interested in future invasive ventilation. DISCUSSION: Factors contributing to quality of life, depression, and attitudes toward treatment options need to be periodically explored with patients and caregivers throughout the course of the illness. Health care professionals should recognize that the needs and goals of the two groups might differ. For both patients and caregivers, health care professionals should provide education and opportunities for discussion centered on the issues followed by referrals and interventions appropriate to the situation.