Developing a Patient Care Pathway for Emotional Support around the point of Multiple Sclerosis diagnosis: A Stakeholder Engagement Study

Tindall, Tierney; Topcu, Gogem; Thomas, Shirley; Bale, Clare; Evangelou, Nikos; Drummond, Avril; das Nair, Roshan

Abstract

Background: Diagnosing multiple sclerosis (MS) can be a lengthy process, which can impact psychological wellbeing, condition management, and future engagement with health services. Therefore, providing timely and appropriate emotional support may improve adjustment and health outcomes. Purpose: To develop a patient care pathway for providing emotional support around the point of diagnosing MS, and to explore potential barriers and facilitators to delivery and implementation. Methods: Focus groups were conducted with 26 stakeholders, including 16 people living with MS, five carers/family members, and five professionals working with people living with MS (three MS Nurses, one psychiatrist, and one charity staff member). Discussions were audio-recorded, transcribed verbatim, and analysed using framework analysis. Results: Participants suggested that a patient care pathway should include comprehensive information provision as a part of emotional support at diagnosis, and follow-up sessions with a healthcare professional. Barriers including increasing staff workloads and financial costs to health services were acknowledged, thus participants suggested including peer support workers to deliver additional emotional support. All participants agreed that elements of a care pathway and embedded interventions should be individually tailored yet provided within a standardised system to ensure accessibility. Conclusions: A patient care pathway was developed with stakeholders which included an embedded MS Nurse support intervention supplemented with peer support sessions. Participants suggested that the pathway should be delivered within a standardised system to ensure equity of service provision across the country.

Citation

Tindall, T., Topcu, G., Thomas, S., Bale, C., Evangelou, N., Drummond, A., & das Nair, R. (2023). Developing a Patient Care Pathway for Emotional Support around the point of Multiple Sclerosis diagnosis: A Stakeholder Engagement Study. Health Expectations, 26(2), 858-868. https://doi.org/10.1111/hex.13711

• Journal Article Type: Article
• Acceptance Date: Jan 11, 2023
• Online Publication Date: Jan 23, 2023
• Publication Date: 2023-04
• Deposit Date: Jan 16, 2023
• Publicly Available Date: Jan 23, 2023
• Journal: Health Expectations
• Print ISSN: 1369-6513
• Electronic ISSN: 1369-7625
• Publisher: Wiley
• Peer Reviewed: Peer Reviewed
• Volume: 26
• Issue: 2
• Pages: 858-868
• DOI: https://doi.org/10.1111/hex.13711
• Keywords: multiple sclerosis, emotional support, diagnosis, qualitative, peer support, stakeholder engagement
• Public URL: https://nottingham-repository.worktribe.com/output/16218827
• Publisher URL: https://onlinelibrary.wiley.com/doi/10.1111/hex.13711