Developing a patient care pathway for emotional support around the point of multiple sclerosis diagnosis: A stakeholder engagement study

Abstract

Background: Diagnosing multiple sclerosis (MS) can be a lengthy process, which can negatively affect psychological well-being, 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, 5 carers/family members and 5 professionals working with people living with MS (3 MS nurses, 1 psychiatrist, and 1 charity staff member). Discussions were audio-recorded, transcribed verbatim and analyzed 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 standardized 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 standardized system to ensure equity of service provision across the country.

Patient or public contribution: This research was conceptualized and designed collaboratively with Nottingham Multiple Sclerosis Patient and Public Involvement and Engagement (PPIE) group members. One member is a co-author and was actively involved in every key stage of the research process, including co-design of the pathway and research protocol, data collection (including presenting to participants and moderating group discussions), analysis and write-up. Authors consulted with PPIE members at two meetings (9 and 11 PPIE attendees per meeting) where they gave feedback on the research design, findings and the resulting pathway. People living with MS and carers of people with MS were included in the focus groups as participants.

Keywords: diagnosis; emotional support; multiple sclerosis; peer support; qualitative; stakeholder engagement.

Figure 1

Initial care pathway around the point of diagnosis of MS. ‘Point of diagnosis’ refers to prediagnosis when investigations are underway or when diagnostic news is given to the patient while ‘newly diagnosed’ refers to the following period (up to five years, as per PPIE comments suggesting that uncertainty following diagnosis can last this long). The top part of the diagram (grey) demonstrates a need for a timely referral system to charity‐based services for bridging the gap between the clinic and the charities around the time of the diagnosis and indicates who could provide the care and where it could be provided. The ‘Technology and the Internet’ section describes the medium by which emotional support could be provided in the interim. This would serve as a link between clinics and charity‐based services, and facilitate the transition of support which is provided by clinics to charity‐based services (denoted by the arrows), by offering relevant, accessible and reliable online information and ongoing online support. Referral to Psychological Services could provide individual support during the point of diagnosis, and Psychological Services could also link service users to charity‐based services. Support from Family/carers is intended to supplement support from MS charities, as per suggestions from PPIE consultation. The bottom two boxes describe when particular types of emotional support could be provided across time. MS, multiple sclerosis; PPIE, Patient and Public Involvement and Engagement.

Figure 2

Study design. MS, multiple sclerosis.

Figure 3

A patient care pathway for emotional support provision around MS diagnosis, co‐constructed with stakeholders. MS, multiple sclerosis.