Objectives: Palliative care addresses the suffering of patients and families affected by progressive illness through the management of medical symptoms, psychosocial issues, and spiritual concerns. Although there is an emerging interest in applying palliative care to Parkinson's disease (PD), potential palliative care needs have not been systematically investigated in PD patients. Our primary objective was to determine the prevalence of clinically significant symptomatic, psychosocial, and spiritual issues in PD and understand their impact on health-related quality of life (HRQOL). Secondary objectives included comparing the level of palliative care needs of PD patients to advanced cancer patients and assessing preferences for advance care planning.
Methods: Ninety PD patients and 47 patients with advanced cancer were surveyed regarding potential palliative care needs, including symptom burden, mood, anticipatory grief, and spiritual well-being. PD patients completed additional scales regarding HRQOL, motor symptoms, cognitive impairment, and preferences regarding advance care planning.
Results: Potential palliative care needs, including high symptom burden and grief, were common in PD patients and contributed to HRQOL even when controlling for depression and motor severity. In all domains investigated, PD patients had similar or higher levels of palliative care needs as patients with advanced cancer. PD patients expressed a desire to complete advance directives early in the disease course and with a physician.
Conclusions: Palliative care needs contribute to HRQOL in PD and are of similar severity as cancer patients. This study supports and helps focus efforts to integrate palliative care principles in PD care across the spectrum of the disease.
BACKGROUND: There is growing interest in the application of palliative care principles to improve care for patients and families affected by neurologic diseases. We developed an interdisciplinary outpatient clinic for patients and families affected by neurologic disorders to better address the problems faced by our highest need patients. We have developed and improved this program over the past three years and share several of our most important lessons as well as ongoing challenges and areas where we see our clinic evolving in the future.
METHODS: We provide a description of our clinic logistics, including key steps in the initiation of the clinic, and provide descriptions from similar clinics at other institutions to demonstrate some of the variability in this growing field. We also provide results from a formal one-year quality improvement project and a one-year retrospective study of patients attending this clinic.
RESULTS: Our clinic has grown steadily since its inception and maintains high satisfaction ratings from patients, caregivers, and referring providers. To maintain standardized and efficient care we have developed materials for patients and referring physicians as well as checklists and other processes used by our interdisciplinary team. Feedback from our quality improvement project helped define optimal visit duration and refine communication among team members and with patients and families. Results from our chart review suggest our clinic influences advance care planning and place of death. Common referral reasons include psychosocial support, complex symptom management, and advance care planning. Current challenges for our clinic include developing a strategy for continued growth, creating a sustainable financial model for interdisciplinary care, integrating our services with disease-specific sections, improving primary palliative care knowledge and skills within our referral base, and building effective alliances with community neurologists, geriatrics, primary care, nursing homes, and hospices.
CONCLUSIONS: Specialized outpatient palliative care for neurologic disorders fills several important gaps in care for this patient population, provides important educational opportunities for trainees, and creates opportunities for patient and caregiver-centered research. Educational initiatives are needed to train general neurologists in primary palliative care, to train neurologists in specialist palliative care, and to train palliative medicine specialists in neurology. Research is needed to build an evidence base to identify patient and caregiver needs, support specific interventions, and to build more efficient models of care in both academic and community settings.
BACKGROUND: There is increasing interest in applying palliative care approaches for patients with Parkinson's disease. Methodological studies are needed to validate palliative care outcome measures for Parkinson's disease to build this evidence base. As many patients with Parkinson's disease have cognitive and/or communication issues, proxy outcome measures may improve the inclusivity and relevance of research.
AIM: To assess the validity of proxy caregiver reports for several potential palliative care outcome measures.
DESIGN: A cross-sectional study of Parkinson's disease patients and caregivers completed a battery of outcome measures relevant to palliative care including the Memorial Symptom Assessment Scale, Hospital Anxiety and Depression Scale, Prolonged Grief Questionnaire 12, Parkinson Disease Questionnaire 39, Functional Assessment of Chronic Illness Therapy-Spiritual Wellbeing, and Schwab and England. Intraclass correlation coefficients were used to assess agreement.
SETTING/PARTICIPANTS: A total of 50 Parkinson's disease patient and caregiver dyads recruited at an academic medical center, Veterans Affairs Medical Center, and community support groups.
RESULTS: There was moderate to good agreement for Schwab and England, Parkinson Disease Questionnaire 39 total, and majority of Parkinson Disease Questionnaire 39 subscales; moderate to good agreement for the Hospital Anxiety and Depression Scale, Functional Assessment of Chronic Illness Therapy-Spiritual Wellbeing, Prolonged Grief Questionnaire 12, and Memorial Symptom Assessment Scale; and poor to moderate agreement for the Parkinson Disease Questionnaire 39 stigma, social support, and bodily pain subscales. Caregivers tended to attribute higher symptom severity than patients. We did not detect differences in intraclass correlation coefficient based on cognitive status but patients with advanced illness had significantly lower intraclass correlation coefficients for several outcomes.
CONCLUSIONS: Caution is indicated when considering caregiver proxy reporting for most outcomes assessed, particularly in Parkinson's disease patients with advanced disease.