PAIR with PAIR: Pitch An Idea for Research with the PAIR Center

Identifying Barriers to Palliative and End-of-Life Care in Huntington’s Disease

CLINICIAN LEAD

Dr. Aaron Lasker, Assistant Professor of Clinical Neurology and Director of the Huntington’s Disease (HD) Center of Excellence

STUDY OVERVIEW

The uptake of palliative and end-of-life care among HD patients lags far behind patients with other serious illnesses, despite considerable impairments in function associated with this relentless and progressive disease. This study aims to qualitatively assess the views and attitudes of HD patients and their families toward palliative care and to quantitatively assess to role of race and socioeconomic background on the diagnosis of HD and care received, including end of life care.

Study of Home-Embedded Palliative Care for Hemodialysis-Dependent End-Stage Renal Disease (SHEPHERD)

CLINICIAN LEAD

Dr. Niharika Ganta, Chief of Penn Palliative Care at Penn Medicine

STUDY OVERVIEW

Dr. Ganta partnered with the PAIR Center to find solutions to the issue of insufficient and inequitable access to palliative care (PC) for patients with end stage renal disease (ESRD). In this this pilot feasibility trial, the team tested an intervention that nudged case managers to refer hospitalized patients with ESRD to Penn Home Palliative Care. 285 patients were enrolled in this study across 2 Penn Medicine hospitals. The study found that nudging case managers to make referrals for home PC increased utilization of home PC. Historically uptake of this service had been very low. The study team was dismayed to learn that most patients still did not receive this service because of geographic availability of traditional home-based PC services . The underserviced geographic areas included more people who were Black or low-income than the areas that had access to home PC services. These findings motivated an implementation science project to identify barriers and facilitators to home PC usage, adoption of a different service delivery model, and the implementation of the SHEPHERD-2 project.

Study of Therapeutic Exercise in Acute Respiratory Failure to Improve Neuromuscular Disability (STAND)

CLINICIAN LEADS

Dr. William Schweickert, Associate Professor of Clinical Medicine in the Pulmonary, Critical Care and Allergy Division and Director of Medical Critical Care Operations*

Juliane Jablonski DNP, RN, CCRN, CCNS Penn Medicine Critical Care Nursing Systems Strategist*

STUDY OVERVIEW

Drs. Schweickert and Jablonski are experts in the clinical operations, quality improvement, and patient safety, particularly in the intensive care unit (ICU) setting. They sought to partner with the PAIR Center to rigorously study an ICU-based initiative to improve mobility and outcomes for mechanically ventilated patients. The goal of the STAND trial was to effectively measure whether a team-based intervention designed to promote the mobility of mechanically ventilated patients, including daily goal setting and performance feedback, resulted in more patients leaving the intensive care unit alive with improved physical function. The STAND team designed and conducted a stepped-wedge cluster-randomized trial across 12 Penn Medicine ICUs; the study enrolled 1,069 patients. While the intervention did not improve mobility as measured by the Intensive Care Mobility Scale score within 48 hours of ICU discharge, it did improve patients’ ability to stand. This collaboration led to a publication in the American Journal of Respiratory and Critical Care Medicine.

Improving the Quality and Frequency of Advance Care Planning Among Hospitalized Patients

CLINICIAN LEAD

Dr. Christopher Jones, Assistant Professor of Clinical Medicine, Palliative Care*

STUDY OVERVIEW

Every patient that gets admitted to any hospital across the United States is asked, “Do you have an advanced directive?” Very often, this question is asked without additional context, the patient says no, and everyone moves on to the next question. Dr. Chris Jones, a palliative care physician, aimed to leverage this workflow by introducing a simple intervention. Patients who reported they did not have an advanced directive were encouraged to complete one and referred to Our Care Wishes, an online platform for advance directive completion built and tested by an interdisciplinary team at Penn’s Center for Health Care Innovation in collaboration with the PAIR Center. Our study examined a total of 16,020 hospital admissions across 3 admission sites at Penn Medicine. The intervention did not lead to an increase in advance directive completion 8 weeks after hospitalization. This collaboration led to a publication in the Journal of Pain and Symptom Management.

*Positions and titles at the time the PAIR with PAIR pilots were awarded.