Palliative Care and Telehealth Improve Quality of Life in Patients With PDRD

Training community neurologists on palliative care and access to telehealth-based support improves quality of life (QoL) and advanced care planning for patients with Parkinson disease and other related disorders (PDRD), according to study findings published in JAMA Neurology. 

Researchers conducted a nonblinded, stepped-wedge, effectiveness trial (ClinicalTrials.gov Identifier: NCT03076671) to compare the feasibility and effectiveness of community palliative care for patients with PDRD from March 2015 to June 2019. A total of 19 community neurology practices in California, Colorado, and Wyoming were used to recruit 359 patients with PDRD (mean age, 74; 64.9% men; 97.2% non-Hispanic White) and 300 caregivers with participating clinicians (n=34). 

Intervention was applied to community practices through 2 approaches:

• Palliative care education and coaching to clinicians using the Education in Palliative and End-of-life Care program
• Access to telehealth consultation with the respective trained palliative care team at each facility for patients and their caregivers

The primary outcomes were observed differences in QoL and caregiver burden within 6 months between usual care and intervention using the Quality of Life in Alzheimer Disease Scale (QoL-AD) and the Zarit Burden Interview (ZBI). Continuous and scale variables were assessed using t-tests and categorical variables were assessed using chi squared and Fisher exact tests. 

Of the 359 patients, a total of 271 patients participated in the intervention.

Patients who received palliative care reported better QoL at 6 months (0.09; 95% CI, -0.63-0.81; P =.80) compared with patients who received standard care (-0.88; 95% CI, -1.62- -0.13; P =.02). The estimated treatment effect of PC was 0.97 (95% CI, .07-1.86; P =.03). 

Among caregivers, no significant difference was found between palliative care and standard care at 6 months (palliative care, 1.19; 95% CI, 0.16-2.23; P =.02; standard care, 0.55; 95% CI, -0.44-1.54; P =.27). Treatment effect was estimated at 0.64 (95% CI, -0.62-1.90; P =.32).

Clinicians who received palliative care training demonstrated an increase in correct knowledge responses after posttraining compared to pretraining, with an estimated mean change of 11% (95% CI, 6.6-15.4, P <.001). By 6 months posttraining improvement decreased with an estimated mean of change at -7.3% (95% CI, -12.8- -1.8; P =.01). 

A total of 113 of 115 patients assigned to standard care and 84 of 116 patients assigned to palliative care completed advance directives before the start of the study (P =.93).

Compared to patients who received standard care, patients who received palliative care were more likely to complete advance directives (19% vs 50%; P =.008) and health care proxy (27% vs 50%; P =.02). However, rates of patients who completed state-specific living wills were similar among both standard care and palliative care groups (25% vs 33%; P =.28) at 6 months.

The study was limited by the potential effect for external temporal trends, lack of control on how clinicians incorporated palliative care in individual practices, lack of diversity in the patient population, and the effects of the COVID-19 pandemic on referrals and palliative care.  

“PC [palliative care] training of community neurologists and provision of specialist PC via telemedicine may improve select outcomes in patients with PDRD,” the researchers concluded. “More research is needed to better define the limits and role of primary PC vs specialist PC in integrated interventions.”