Palliative care — focusing on physical, psychosocial and spiritual treatment — for people with Parkinson’s disease and related disorders (PDRD) led to a significantly better quality of life (QoL) than standard care alone, a study finds.
The study, “Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders,” was published in the Journal of the American Medical Association, Neurology.
Parkinson’s disease and related disorders (PDRD) are a group of disorders that share core features of Parkinson’s but have additional symptoms. People with PDRD do not respond well to standard Parkinson’s medications and have a poor prognosis.
Given the additional needs of patients with PDRD, an increasing number of medical centers are providing palliative care for these patients.
While such care is typically associated with hospice and cancer, “recognition of the potential relevance of [palliative care] in other contexts has expanded substantially over the past decade to include earlier deployment, delivery to noncancer populations, delivery in outpatient settings, and delivery by persons not specializing in palliative medicine,” the researchers said.
Palliative care, known as PC, aims to improve quality of life (QoL) and reduce suffering by addressing medical symptoms, psychosocial issues, and care planning.
Despite the recent advances in patient care, few studies are available that support the effectiveness of palliative care in the PDRD population.
Thus, a team of investigators from the University of Colorado (UC), the University of California, San Francisco (UCSF), and the University of Alberta (UA) in Canada, designed a study (NCT02533921) to examine the effects of this care approach. The team compared outpatient palliative care with standard care alone to assess any differences in participants’ QoL, the burden on the caregiver, and other patient-related outcomes.
A total of 210 PDRD patients with moderate-to-high care needs were enrolled in the study, with participants randomly divided into a standard care group and a palliative care group. Of those selected, 104 patients and 88 caregivers were part of the standard care group, while 106 patients and 87 caregivers were assigned to the palliative care intervention group.
Standard care was provided by the patient’s primary care physician and a neurologist.
Outpatient palliative care included standard care plus visits every three months either in person or by telemedicine — two-way videoconferencing and advanced information communication technologies. The PC team consisted of a specialized neurologist with palliative care workshop training, a nurse, a social worker, a chaplain experienced with Parkinson’s patients, and a physician specializing in this type of care.
The primary outcomes were defined as differences in patient QoL after six months, measured using the Quality of Life in Alzheimer’s Disease (QoL-AD) scale, and by determining caregiver burden, using the 12-item Zarit Burden Interview (ZBI-12).
Additional patient outcomes also were assessed, including symptom burden and health-related QoL. Patient and caregiver mood, grief, spiritual well-being, and overall impression of change also were reported. The outcomes for both patients and caregivers were recorded at the beginning of the study, and every three months for 12 months.
The results showed that, after six months, those receiving outpatient palliative care had significantly better QoL compared with those receiving standard care. When QoL assessments of patients and caregivers were combined, the impact was even greater.
While the ZBI-12 difference in caregiver burden at six months was not significant, reassessment at 12 months showed a statistically significant difference.
The greatest benefit from palliative care intervention was seen among the patients who were assessed, at the beginning of the study, as having greater needs. After 12 months, palliative care had a greater effect on women compared with men.
In comparison with the standard care group, the PC group had a greater number of patients who experienced a clinically significant benefit in QoL-AD, and a lower number of those who scored worse.
Factors such as age, mood, symptom burden, disease severity, and cognition were not significantly different. However, improvements in non-motor symptoms, motor symptoms severity, and caregiver anxiety were linked to palliative care.
Standard care alone was not favored for any outcome, the results showed.
“Outpatient PC is associated with benefits among patients with PDRD compared with standard care alone,” the researchers concluded. “This study supports efforts to integrate [palliative care] into PDRD care.”
The researchers said such efforts are particularly needed for people with more severe symptoms.
“The integration of [palliative care] into PDRD care holds the potential to improve outcomes, particularly for persons who are underserved by current models of care (eg, patients with advanced illness and dementia),” the investigators said.
“Because the PC intervention is time-intensive and resource-intensive, future studies should optimize triage tools and consider alternative models of care delivery, such as telemedicine or care navigators, to provide key aspects of the intervention at lower cost,” they recommended.