A Patient-centered Approach to Successful Community Transition After Catastrophic Injury

Shepherd Center is bringing a more patient-centered focus to educational, peer-support, and technology resources offered to patients with spinal cord injury and their families and is evaluating these changes.

Approximately 740 patients have provided information about healthcare utilization following inpatient rehabilitation. This information will help Shepherd Center staff follow utilization trends and plan programs targeted at the high-use areas.

Study Overview

• Status: Unknown
• Conditions: Spinal Cord Injury; Peer Group
• Intervention / Treatment: Other: Peer directed education; Other: Patient Engagement Portal

Detailed Description

Research efforts are transforming the educational, peer-support and technology resources offered to patients and their caregivers, and evaluating how these changes help improve outcomes, including building patients' sense of self-efficacy - the belief that they can effectively manage their own care. Goals of the three focus areas include:

A. Patient and Family Education Revamp patient education modules for bladder management, skin management, and medical complications management to follow the chronic disease self management approach that replaces didactic lectures with participant-focused problem solving discussions led by peers (persons with SCI). Multiple baseline implementation approaches will be evaluated in interrupted time series analyses.

B. Peer mentoring and peer-led self-management training The peer mentor randomized clinical trial is reported separately on clinicaltrials.gov and not repeated here.

C. Patient and family web portal Shepherd Center, along with our collaborators at Craig Hospital in Denver, Colorado, are developing an engagement portal to provide a mechanism for patients to manage all aspects of injury following rehabilitation discharge and share information with other providers and caregivers.The portal will become a standard part of rehabilitation care and discharge planning for all Shepherd Center patients - starting first with patients with spinal cord injuries and later expanding to others. Stakeholders will be actively involved in providing feedback about portal usability and content so that the product continues to meet their needs.

• Study Type: Interventional
• Enrollment (Anticipated): 800
• Phase: Not Applicable

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

Description

Inclusion Criteria:

• patient receiving inpatient rehabilitation at Shepherd Center following spinal cord injury
• discharge to community setting

Exclusion Criteria:

• discharge to non-community setting
• patient without spinal cord injury at Shepherd Center

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Prevention
• Allocation: Non-Randomized
• Interventional Model: Parallel Assignment
• Masking: None (Open Label)

Number of Arms

2

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Active Comparator: Peer directed education; A revised education approach that focuses on problem solving discussions delivered by peers and grounded clinical information is compared to traditional approach of didactic clinician-driven education lectures	Other: Peer directed education; No drug or device is included. The intervention of interest is the redesigned approach to inpatient education that follows the Stanford chronic disease self management approach which includes peer-led problem solving discussions compared to traditional didactic education lectures provided by nurse educators
Other: Patient Engagement Portal; A patient-owned portal to manage injury information is maintained in real-time by patients and families and shared with other care providers after inpatient rehabilitation discharge.	Other: Patient Engagement Portal; No drug or device interventions. The Engagement Portal is populated by electronic medication record information (demographics, medications, supplies) then owned/maintained by patient after discharge. This approach to managing information and conditions associated with injury will be compared to the traditional approach of providing patients with a large instruction manual to carry home with them.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Rehospitalization	patient report on telephone interview	30 days post rehabilitation discharge

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Rehospitalization	patient report on telephone interview	90 days post rehabilitation discharge

Other Outcome Measures

Outcome Measure	Measure Description	Time Frame
Depression as measured by the Patient Health Questionnaire (PHQ)	Data aggregated per scoring rules of validated measure. patient report on telephone interview	180 days post rehabilitation discharge
Societal participation as measured by CHART (Craig Handicap Assessment and Reporting Technique)- questionnaire	Data aggregated per scoring rules of validated measure. patient report on telephone interview	180 days post rehabilitation discharge
Satisfaction with Life Scale	patient report on telephone interview	180 days post rehabilitation discharge
Healthcare utilization - rehospitalization, emergency room visits, urgent care visits	per patient report on telephone interview	180 day post rehabilitation discharge
Press Gainey patient satisfaction with care - interview	Data aggregated per scoring rules of validated measure	30 days post rehabilitation discharge

Collaborators and Investigators

• Sponsor: Shepherd Center, Atlanta GA
• Collaborators: Patient-Centered Outcomes Research Institute
• Investigators: Study Director: Julie Gassaway, Dir Health and Wellness

Study record dates

Study Major Dates

• Study Start: August 1, 2013
• Primary Completion (Anticipated): December 1, 2016
• Study Completion (Anticipated): December 1, 2016

Study Registration Dates

• First Submitted: February 29, 2016
• First Submitted That Met QC Criteria: April 18, 2016
• First Posted (Estimate): April 21, 2016

Study Record Updates

• Last Update Posted (Estimate): April 21, 2016
• Last Update Submitted That Met QC Criteria: April 18, 2016
• Last Verified: April 1, 2016

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Central Nervous System Diseases; Nervous System Diseases; Trauma, Nervous System; Spinal Cord Diseases; Wounds and Injuries; Spinal Cord Injuries
• Other Study ID Numbers: IH-12-11-5106

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO