Developing a Care Pathway to Support Patients Through MS Diagnosis

Results from a series of focus groups including stakeholders, people with multiple sclerosis (MS), and their caregivers suggest an optimally effective patient care pathway must prioritize emotional support through comprehensive information at diagnosis and subsequent professional and peer check-ins. 

“The value of providing accessible information, suitable advice and support at diagnosis is well recognized,” stated researchers of a study published in Health Expectations. “However, current literature demonstrates that poor support and information provision has continued for people with MS throughout their diagnosis period and should be part of emotional support.” 

To develop suggestions for a patient care pathway that prioritizes emotional support for people being diagnosed with MS and also anticipates obstacles, researchers conducted focus groups with 26 stakeholders, including 16 patients with MS, 5 caregivers or family members, and 5 professionals working with people who have MS. 

Focus group participants suggested a patient care pathway is recommended to be standardized for accessibility but tailored to the unique needs of patients and caregivers. An ideal pathway supported patients’ emotional needs through providing extensive information at the point of diagnosis and routine check-ins with a health care 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,” researchers said. 

Reference:
Tindall T, Topcu G, Thomas S, et al. Developing a patient care pathway for emotional support around the point of multiple sclerosis diagnosis: A stakeholder engagement study. Health Expect. 2023;1‐11.doi:10.1111/hex.13711