Introduction
Parkinson’s disease (PD) affects 1 – 2% of the population above 65 years of age and has consequences on quality of life (QoL). PD and related disorders (PDRD) tend to have additional symptoms contributing to worse prognosis. In recent times, palliative care (PC) has been applied to PDRD by using out-patient integrated PC led by a neurologist with the aim of improving the patient quality of life.
Objective
To evaluate the effects of outpatient integrated PC and standard care alone on patient quality of life, caregiver burden and other patient-centred outcomes.
Patients and Methods
A non-blinded randomized clinical trial comprising 210 PD patients requiring moderate to high PC and 175 caregivers was conducted. The patients were randomized to receive
- Standard care plus outpatient integrated PC (106 patients and 87 caregivers)
- Standard care alone (104 patients and 88 caregivers)
Outcome Measures
Primary Outcomes
- Change in Quality of Life (QoL) [Quality of Life in Alzheimer’s Disease (QoL-AD) scale]
- Caregiver Burden [12-item Zarit Burden Interview (ZBI-12)]
Secondary Outcomes
- Symptom Burden [Edmonton Symptom Assessment Scale–Revised for Parkinson’s Disease]
- Patient and Caregiver mood, grief, spiritual well-being, patterns of health care
- Motor Symptoms [Unified Parkinson’s Disease Rating Scale (UPDRS)]
- Cognitive function [Montreal Cognitive Assessment (MCA)]
Results
- 82.1% of the patients in the palliative care group completed all outpatient visits thereby demonstrating high adherence.
- The estimated rate of neurologist visits per person per year was 3.16 and the estimated rate of primary care physician visits per person per year was 4.66 in the standard group.
- Telemedicine was used for at least one visit for 17.9% of the patients in the palliative group, and the palliative medicine physician was directly involved in the care of 46.2% of the patients.
- When compared to the standard care group, the participants in the PC group had better quality of life at 6 months.
- The PC group had a comparatively higher proportion of persons who experienced a clinically significant benefit (20% in the standard care group vs 35% in the PC group) and a lower proportion of persons who experienced clinically significant worsening (41% in the standard care group vs 25% in the PC group).
- At 12 months, the treatment effect for women was 2.91 (95% CI, 0.67-5.14; P = .01) and for men, it was 0.47 (95% CI, −1.22 to 2.16; P = .58), indicating a 2.43 (95% CI, −0.36 to 5.23; P = .09) greater treatment effect for women than men.
- Even though the PC group experienced a significant reduction in caregiver burden when compared to the standard care group at 12 months.
- A surge in the Palliative Care Needs Assessment Tool (PC-NAT) score, dip in the MCA score and worse grief was notably associated with greater caregiver burden benefit at 12 months.
- The patients randomized to the PC group were more likely to have completed an advanced directive (53% vs 26%) in the standard care group for the 6-month visit in the scenario that the patient did not possess an advanced directive at baseline.
Figure 1. Patient-Reported and Caregiver-Reported Outcomes. A) Patient-reported outcomes. QoL-AD indicates Quality of Life in Alzheimer Disease Scale. B) Caregiver-reported outcomes. ZBI-12 indicates Zarit Burden Interview 12-item scale. Error bars indicate the SE. a Points with significant group differences in the primary adjusted model.
Conclusion
Integration of outpatient palliative care can improve outcomes amongst patients with Parkinson disease and related disorders when compared to standard care alone.