Integrated outpatient palliative care benefits Parkinson’s disease patients
A randomized study of 210 patients with Parkinson’s disease and related disorders (PDRD) and of 175 caregivers found that patients receiving integrated outpatient palliative care (PC) in addition to standard treatment had better quality of life (QoL) than those receiving standard care alone.
Compared with the standard care group, participants in the PC intervention group had better QoL assessed using the 39-item Parkinson’s Disease Questionnaire (mean [standard deviation], 0.66 [5.5] improvement vs 0.84 [4.2] worsening; p=0.009). [JAMA Neurol 2020, doi: 10.1001/jamaneurol.2019.4992]
A statistically and clinically significant benefit in motor symptoms was observed among participants in the PC intervention group at 6 months (-2.98; 95 percent confidence interval [CI], -5.79 to -0.18; p=0.04). The motor symptoms were assessed using the motor subscale of the Unified Parkinson’s Disease Rating Scale (score range, 0−56, with 0 indicating no motor symptoms and 56 indicating maximum motor symptoms).
Other effects favouring the PC intervention included nonmotor symptom burden, health-related QoL, grief, caregiver anxiety, the peace subscale of caregiver spiritual well-being (measured by the Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being), and both patient and caregiver global impressions of change.
“No outcomes favoured standard care alone,” stated the researchers.
Compared with the standard care group, the PC intervention group had a higher proportion of persons who experienced clinically significant benefit (20 percent in the standard care group vs 35 percent in the PC intervention group; p=0.02), and a lower proportion of persons who experienced clinically significant worsening (41 percent vs 25 percent; p=0.02).
Higher PC needs at baseline (assessed by the Palliative Care Needs Assessment Tool) were significantly associated with greater benefit from the PC intervention. “As the benefits of PC were greatest for those with high PC needs, our results may have underestimated treatment effects because we excluded patients with urgent needs,” commented the researchers.
“At 12 months, the treatment effect for women was 2.91 (95 percent confidence interval [CI], 0.67 to 5.14; p=0.01) and 0.47 for men (95 percent CI, -1.22 to 2.16; p=0.58), indicating a 2.43 (95 percent CI, -0.36 to 5.23; p=0 .09) greater treatment effect for women than men,” noted the researchers.
The benefits observed in caregiver burden were larger at 12 months than at 6 months. “Because PDRD are progressive illnesses, it is possible that this delayed benefit reflects the progression of the underlying illness and higher needs at a later time point,” suggested the researchers.
Participants assigned to the PC intervention group received outpatient PC visits every 3 months for 1 year. Palliative medicine specialists (usually a neurologist with fellowship or informal PC training) primarily focused on the complex goals of care and symptom management. The typical visit duration was 2 hours to 2.5 hours and addressed nonmotor symptoms, anticipatory guidance, difficult emotions, and caregiver support. Adherence in the PC intervention group was high, with 87 of 106 randomized patients (82.1 percent) completing all planned outpatient visits.