Palliative Care Planner: A Pilot Study to Evaluate Acceptability and Usability of an Electronic Health Records System-integrated, Needs-targeted App Platform

Abstract

Rationale: The quality and patient-centeredness of intensive care unit (ICU)-based palliative care delivery is highly variable.

Objective: To develop and pilot an app platform for clinicians and ICU patients and their family members that enhances the delivery of needs-targeted palliative care.

Methods: In the development phase of the study, we developed an electronic health record (EHR) system-integrated mobile web app system prototype, PCplanner (Palliative Care Planner). PCplanner screens the EHR for ICU patients meeting any of five prompts (triggers) for palliative care consultation, allows families to report their unmet palliative care needs, and alerts clinicians to these needs. The evaluation phase included a prospective before/after study conducted at a large academic medical center. Two control populations were enrolled in the before period to serve as context for the intervention. First, 25 ICU patients who received palliative care consults served as patient-level controls. Second, 49 family members of ICU patients who received mechanical ventilation for at least 48 hours served as family-level controls. Afterward, 14 patients, 18 family members, and 10 clinicians participated in the intervention evaluation period. Family member outcomes measured at baseline and 4 days later included acceptability (Client Satisfaction Questionnaire [CSQ]), usability (Systems Usability Scale [SUS]), and palliative care needs, assessed with the adapted needs of social nature, existential concerns, symptoms, and therapeutic interaction (NEST) scale; the Patient-Centeredness of Care Scale (PCCS); and the Perceived Stress Scale (PSS). Patient outcomes included frequency of goal concordant treatment, hospital length of stay, and discharge disposition.

Results: Family members reported high PCplanner acceptability (mean CSQ, 14.1 [SD, 1.4]) and usability (mean SUS, 21.1 [SD, 1.7]). PCplanner family member recipients experienced a 12.7-unit reduction in NEST score compared with a 3.4-unit increase among controls (P = 0.002), as well as improved mean scores on the PCCS (6.6 [SD, 5.8]) and the PSS (-0.8 [SD, 1.9]). The frequency of goal-concordant treatment increased over the course of the intervention (n = 14 [SD, 79%] vs. n = 18 [SD, 100%]). Compared with palliative care controls, intervention patients received palliative care consultation sooner (3.9 [SD, 2.7] vs. 6.9 [SD, 7.1] mean days), had a shorter mean hospital length of stay (20.5 [SD, 9.1] vs. 22.3 [SD, 16.0] patient number), and received hospice care more frequently (5 [36%] vs. 5 [20%]), although these differences were not statistically significant.

Conclusions: PCplanner represents an acceptable, usable, and clinically promising systems-based approach to delivering EHR-triggered, needs-targeted ICU-based palliative care within a standard clinical workflow. A clinical trial in a larger population is needed to evaluate its efficacy.

Keywords: critical illness; electronic health record; palliative care; patient-centeredness; patient-reported outcomes.

Figure 1.

Study flow for Palliative Care Planner (PCplanner) intervention. The intensive care unit team (ICU) reviewed PCplanner’s list of patients who met e-triggers and approved the study team approach of the family. After the first family data collection (including the needs of social nature, existential concerns, symptoms, and therapeutic interaction needs scale), the care teams were alerted and at least one palliative care-led family meeting was held. CRC = clinical research coordinator.

Figure 2.

The needs of social nature, existential concerns, symptoms, and therapeutic interaction (NEST) score changes between pre- and postintervention. The NEST total score is shown in bold; each NEST item is displayed beneath it. The vertical line represents 0. Bars extending to the right of the vertical line show a net reduction in needs between pre- and postintervention. Bars extending to the left represent an increase in need over time. Orange bars represent intervention family members (n = 18); gray bars represent family members of mechanical ventilated patients (control B group; n = 49).