3018 — VHA Patient and Caregiver Persepctives about the Quality of Life and Satisfaction with Care for Parkinson's Disease
Cramer IE (Center for Organization, Leadership and Management Research), Meterko MM
(Center for Organization, Leadership and Management Research), Lin H
(Center for Organization, Leadership and Management Research), Hendricks A
(Health Care Financing & Economics), Holloway RG
(University of Rochester School of Medicine and Dentistry), Seibert MN
(Center for Organization, Leadership and Management Research), Gardner J
(Health Care Financing & Economics), Charns MP
(Center for Organization, Leadership and Management Research)
As VHA improved care for people with chronic illness, it focused on Parkinson’s disease (PD). In the Parkinson’s Disease Research, Education and Clinical Centers (PADRECC) evaluation, we surveyed patients and informal caregivers to identify experience of care, health status, quality of life, and unmet needs.
We identified potential patient respondents from VHA administrative data and mailed screener letters to a randomized stratified sample (PADRECC vs. non-PADRECC) allowing for self-identification of PD and informed consent. In the patient survey, we asked for permission/contact information to send a survey to an informal caregiver. The questionnaires included previously validated measures including general health status (SF-12, VA SHEP), PD-related health status/quality of life (UPDRS, PDQ-8), experience of care/satisfaction (VA SHEP, Patient Assessment of Chronic Illness Care (PACIC)), caregiver burden (Montgomery Caregiver Burden), and items developed for this study.
2375 patients and 831 informal caregivers completed surveys (response rates are 83% and 75%, respectively). 92% of patients and 64% of caregivers were over 60 years of age. 68% of caregivers lived with the patient. SF-12 scores revealed that both groups experienced significant problems with physical and emotional functioning. PD measures (PDQ-8 and UPDRS) indicated moderately high level of disability. 95% of patients and 57% of caregivers reported co-morbid medical conditions with caregivers also citing the negative impact of caregiving on quality of life. Approximately 30% of both patients and caregivers reported patients’ using PADRECC services. About 56% reported use of both VA and non-VA services. Less than 20% reported receiving education/support services with close to 75% wishing for more. Both patients’ and caregivers’ SHEP scores indicated satisfaction with the care. PACIC scores identified unmet needs for care for chronic illness such as treatment planning, goal setting, coordination, and follow-up.
These data reflect a patient population with chronic complex health needs supported by caregivers living with medical and emotional strain. Although both groups report satisfaction with care, they also identified unmet essential needs such as treatment planning, care coordination, and education/support.
These data describe the extent to which VHA meets the core needs of PD patients and their informal caregivers and reveal strengths and challenges.