Palliative Care Knowledge and Attitudes among Patients with Neurodemyelinating Diseases
Aliza Ben-Zacharia1, Andrea Bartels2, Helen Brugger3, Jena Malchiodi3, Stephanie Carbone3, Angelo Volandes4, Francois Bethoux5
1Nursing, Mount Sinai, 2YNHH - MS Center, 3Neurology, Yale New Haven Hospital, 4Palliative Care, Harvard Medical school, 5Neurology, Cleveland Clinic
Objective:

Evaluate PC knowledge and attitudes of patients with neurodemyelinating diseases.

Background:

Neurodemyelinating diseases lead to functional loss, requiring demanding care with great distress to patients and their caregivers. Palliative care (PC) would benefit these individuals. However, PC inpatient neuro services have only increased from 0.2% to 6% (2005-2014, respectively) without increases in ambulatory settings.

Design/Methods:

A cross-sectional, descriptive design with a convenience sample of 84 patients from 3 neuroimmunology clinics in a Northeastern healthsystem was performed. Participants completed a confidential survey composed of PC Knowledge Scale (PaCKS) and PC Health Information National Trends Survey (HINTS). Murray’s transition theory guided this study, which contextualizes the chronic condition integrating PC services, patient decision-making, communication, and care coordination. Descriptive statistics characterized the sample and the survey responses.

Results:

Most participants were white race (79%), non-Hispanic ethnicity (77%), female gender (69%) and 57% had formal higher education. 82% had multiple sclerosis (MS). A small proportion had advance directives (21%). Approximately 48% to 62% correctly answered PaCKS knowledge questions about PC eligibility criteria (3-items), goals (7-items), and operations (3-items). HINTS focused on PC attitudes and 42% indicating that they never heard of PC. Of the remaining participants, 77% to 87% agreed/strongly agreed with 3-items reflecting PC goal (coping, support, symptom management), whereas, 30% disagreed/strongly disagreed that PC gave patients more time at end-of-life. More than 50% accurately disagreed/strongly disagreed with 4-items that were more aligned with hospice care not PC. Most (67%) felt doctor’s had an obligation to inform patients about PC.

Conclusions:

Many participants were unaware of PC, had knowledge gaps, or inaccurate attitudes about its services and benefits. Results provide a call-to-action for nurses and providers to counsel patients and refer them to PC. Interventional studies are needed to test strategies to improve PC access and related outcomes.

10.1212/WNL.0000000000201902