Caregiver Involvement in MS: Duty or Disruption?

Area of Science:

• Neurology
• Patient Care
• Healthcare Dynamics

Background:

• Multiple sclerosis (MS) presents complex physical, cognitive, and emotional symptoms requiring lifestyle adjustments for patients and families.
• The role of families and caregivers in managing MS is debated, with potential for both positive and negative influences on patient outcomes.
• Historically, shared decision-making in MS involved only healthcare professionals (HCPs) and people with MS (PwMS), but support persons now frequently attend appointments.

Purpose of the Study:

• To examine current perceptions of constructive family and caregiver involvement in consultations and management of MS.
• To identify areas requiring further research regarding family and caregiver participation in MS care.
• To encourage HCPs to understand and individualize interactions based on the dynamics between PwMS and their support persons.

Main Methods:

• The study is based on a live debate involving neurologists and people with MS (PwMS).
• Analysis of current perceptions regarding the involvement of families and caregivers in MS management.
• Review of existing evidence on the impact of family involvement on PwMS outcomes.

Main Results:

• Family and caregiver involvement can have a strong positive or negative influence on PwMS' treatment and disease management outcomes.
• PwMS are increasingly accompanied by support persons to appointments, highlighting the need for HCPs to adapt consultations.
• Constructive involvement must be for the benefit of and at the discretion of the PwMS.

Conclusions:

• Healthcare professionals (HCPs) must understand the dynamics between PwMS and their support persons to individualize care.
• Support for families of PwMS may be better delivered outside the clinical setting.
• Educating HCPs on the patient experience is crucial for personalized, patient-centered care and optimizing outcomes through improved communication.