Measures for Persons with Spinal Cord Injury to Monitor Their Transitions in Care, Health, Function, and Quality of Life Experiences and Needs: A Protocol for Co-Developing a Self-Evaluation Tool

Healthcare, 2024 · DOI: 10.3390/healthcare12050527 · Published: February 23, 2024

Spinal Cord Injury Patient Experience Healthcare

Simple Explanation

The study addresses the need for a comprehensive tool to evaluate the experiences of individuals with spinal cord injury (PwSCI) during transitions in care, focusing on changes in their health, function, and quality of life. Stakeholders chose to co-develop a single tool for PwSCI to monitor their transition experiences, addressing care and support needs at discharge and in the community at 3, 6, and 12 months post-discharge. The developed tool will be available online and undergo reliability and validation testing by PwSCI before its launch.

Study Duration

Not specified

Participants

PwSCI, clinicians, other care providers, health care administrators/decision makers, community partners, and researchers

Evidence Level

Not specified

Key Findings

1
Stakeholders chose to co-develop one tool to be used by persons with SCI to monitor their transition experiences across settings and care providers.
2
The tool was designed to follow the transition experiences of PwSCI, addressing needs and gaps at discharge and over different periods of time in the community.
3
The protocol included a modified Delphi process to select existing measures and involved diverse SCI stakeholders in the tool's development.

Research Summary

The study aims to address the complex, fragmented, and multi-faceted evaluation of PwSCI experiences regarding transitions in care, health, function, and quality of life. A staged protocol involving PwSCI and expert stakeholders was implemented to explore and co-select existing measures or co-develop a unique condensed tool. The stakeholders opted for co-developing a single tool to be used by PwSCI to monitor their transition experiences across settings and care providers, from discharge to community reintegration.

Practical Implications

Improved Monitoring

PwSCI can actively monitor their needs, gaps, and changes over time related to their transitions in care, health, function, and quality of life.

Informed Care

Care providers can review and address the identified needs and gaps of PwSCI, leading to more tailored and effective support.

Standardized Evaluation

The developed tool provides a standardized approach to evaluate transition experiences, facilitating better tracking and addressing of care needs over time.

Study Limitations

1
Challenges were identified with developing and having one tool.
2
Selecting and deciding on what items or measures were most important to capture in the tool took more commitment and time and much debate or discussion among the stakeholders but particularly with PwSCI.
3
There was a realization that no one tool could be perfect in measuring all of the experiences relevant to any particular issue or circumstance, and since this tool was intended to be a snapshot, stakeholders accepted this limitation with one tool versus 10 tools.

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