Multiple Sclerosis is a chronic demyelinating illness of the Central Nervous System requiring multidisciplinary team approach for successful management. Considered a rare disease in India in the past, it is being increasingly diagnosed nowadays mainly due to increase in the number of practicing neurologists and easy and affordable availability of Magnetic Resonance Imaging (MRI). The current World Health Organization (WHO) Multiple Sclerosis International Federation (MSIF) “Atlas of MS”, 2013 estimates a prevalence rate of 5-20 per 100,000 in India, which seems to be an underestimate.
Advances in medicine, technology and healthcare services offer promises of longevity and improved quality of life (QoL) in M.S. The prognosis is largely centered around quality of life and potential for disability. There is increased reliance on a patient’s skills and motivation to optimize all available resources. To improve the outcomes for the patient, society, and healthcare systems, patient engagement in multiple sclerosis is vital.
Patients have to face decisions relating to treatment, interventions and services availability, and Quality of Life on a long-term basis. Collaboration with the patients to help them monitor and manage their health has shown enormous benefits in M.S. As per studies, patients report symptoms early and more frequently than clinicians and the reports are highly concordant with overall health status than clinician’s reports (Basch, 2010). A number of studies have reiterated the importance of relying on patient-reported outcomes for a holistic multidisciplinary management in Multiple Sclerosis.
Patient-reported outcomes (PROs) include information provided by the patient reflecting their functioning health and wellbeing from their perspective and impact of the disease and medical intervention on QoL. PROs introduce a more holistic approach to disease management by incorporating outcomes affecting the patient across many aspects of QoL.
The MS in the 21st Century Steering Group devised a set of themes that require action with regard to patient engagement in MS, namely: