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Project

Integrating Patient-Centered Outcomes in Rehabilitation and Community Spinal Cord Injury Care

Funder: Craig H Neilsen Foundation

Funding period
USD 381 K
Funding amount
Abstract
Background: Ensuring care is patient-centered can be particularly challenging in spinal cord injury (SCI). Due to the sudden onset and variable severity, people with SCI often experience a wide range of limitations and secondary complications which evolve over time. Patient-Reported Outcomes (PROs) offer a primary way of monitoring whether the care provided to persons with SCI addresses what matters most to patients. There exist barriers, which impede the implementation of PROs in clinical settings. PRO data must be perceived to be relevant, meaningful and actionable to those who will have to invest the time and effort to collect it. Hypothesis: We hypothesize that collection of SCI-PROs at regular intervals will be feasible and acceptable, will increase patient engagement, satisfaction, communication, and shared decision-making between patients and providers, facilitate goal setting and problem-solving, and increase the focus on patient-valued outcomes. We also hypothesize that this type of clinical encounter will not only provide skill enhancement for clinicians but also increase psychosocial-quality of life of persons with SCI. Objectives: The goal of this project is to promote patient-centered through routine collection of a core set of SCI PROs and clinician ratings (SCI-CORE). SCI-CORE will be collected regularly via online electronic data capture with real-time scoring and reporting (EDCR). We feel that this will be feasible and acceptable, facilitate goal setting and problem-solving, and increase the focus on patient-valued outcomes. Specific aims include: Develop a participatory stakeholder-driven process to identify a minimal battery of essential SCI PROs and clinician ratings, assess acceptability, and feasibility and fidelity of integrating SCI-CORE EDCR into routine care in rehabilitation settings, and evaluate the impact of using longitudinal SCI-CORE assessments on patient and clinicians perceptions. Methodology: Phase 1 will use a participatory approach with our stakeholders to identify a harmonized core set of PROs for use in SCI rehabilitation. Phase 2 will develop the PRO prototype battery and platform including a customized interface. In Phase 3 we will implement and evaluate the SCI-PRO intervention in a user’s needs assessment allowing us to evaluate facilitators and barriers to implementation and sustainability. Evaluation: Data will be collected through: standardized questionnaires, focus groups, individual interviews, local administrative data and patient chart reviews and web analytics from the e-PRO system and we will evaluate the tool’s reach, acceptability, feasibility and fidelity of implementation and measure the perceptions of care and change in health-related quality of life. Expected results: Results of this demonstration study will potentially have an impact that is relevant to make health care more patient-centered, increase shared decision-making, promote self-management, and facilitate clinical research across SCI network. If hypothesized outcomes are observed, data will be used as preliminary data for a full scale RCT evaluating the effectiveness of this approach across settings in the US and Canada. (CHN: PSR chn:wdg)
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System

Categories
  • FOR (ANZSRC)

    0806 Information Systems

  • FOR (ANZSRC)

    1103 Clinical Sciences

  • FOR (ANZSRC)

    1117 Public Health and Health Services

  • RCDC

    Injury (total) Accidents/Adverse Effects

  • RCDC

    Injury - Trauma - (Head and Spine)

  • RCDC

    Health Services

  • RCDC

    Rehabilitation

  • RCDC

    Spinal Cord Injury

  • RCDC

    Behavioral and Social Science

  • RCDC

    Clinical Research

  • RCDC

    Comparative Effectiveness Research

  • RCDC

    Neurodegenerative

  • HRCS RAC

    7.1 Individual care needs

  • HRCS RAC

    7.3 Management and decision making

  • Health Research Areas

    Health services & systems

  • Broad Research Areas

    Health Services Research