DevelOPment of a ToolkIt to iMprove medicAtion self-management for persons with spinaL cord injury (OPTIMAL-SCI): A concept mapping study

Background: Adults with spinal cord injury/dysfunction (SCI/D) are commonly prescribed multiple medications to manage secondary conditions. Significant challenges with managing medications have been highlighted. Adults with SCI/D may interact with multiple healthcare providers and receive fragmented care specific to their medications. Prior research has also emphasized the need for more support with medication self-management among the SCI/D population. Objective: To co-develop a toolkit to assist with medication self-management for adults with SCI/D. Patient and Public Involvement: A working group consisting of adults with SCI/D, caregivers, and healthcare providers was assembled to inform all phases of the study and to contribute to the co-development of material for the toolkit. Methods: A mixed methods study, using a concept mapping approach, was conducted. Concept mapping is a participatory methodology that actively involves participants in data collection and analysis. There are three key steps – brainstorming, sorting and rating, and mapping. Participants included adults with SCI/D, caregivers, and healthcare providers. In the brainstorming sessions, participants generated ideas about content to include in the toolkit and how it should be delivered. The research team synthesized these ideas into a final list for sorting and rating. Participants sorted the final statements into conceptual piles and assigned a name to each pile. Participants rated each statement on a five-point Likert-type scale based on importance and feasibility. A subset of participants took part in the mapping session where a visual map of the data was co-developed. Go-zone plots and pattern match diagrams were created to compare the rating data across participant demographics. Results: Thirty individuals participated in the brainstorming sessions, 35 completed the sorting and rating, and 10 participated in the mapping session. The final map contained eight clusters: (1) information-sharing and communication; (2) healthcare provider interactions and involvement; (3) peer and community connections; (4) supports and services for accessing prescription medications and medication information; (5) information on non-prescription medication and medication supplies; (6) safety and lifestyle considerations; (7) general medication information; and (8) practical information and strategies related to medication-taking. Safety and lifestyle considerations was the cluster rated by participants as the most important and feasible to include in the toolkit. Implications and Next Steps: Promoting medication self-management can assist with integration of care between healthcare providers and across sectors, specifically by actively involving the person with SCI/D in all aspects of their care. In the subsequent phases of this study, the toolkit will be refined through cognitive interviews and input from our working group. A mixed methods pilot evaluation will then be conducted to assess the feasibility, acceptability, and appropriateness of the toolkit, as well medication knowledge, self-efficacy, and quality of life. Conclusions: Given the impact of medication-taking on persons with SCI/D and current lack of support tools, this research presents an innovative solution to address this problem. The active involvement of adults with SCI/D in medication management has the potential to improve their health and well-being, as well as the integration of care.