Focus group on the experience of patients and family members in the multiple sclerosis unit of a tertiary hospital

Introduction Multiple sclerosis (MS) is an immunological, degenerative and chronic neurological disease that is frequently diagnosed in young adults. Medical care might be challenging as MS symptoms are heterogenic and sometimes medical-care team requirements might not meet MS patients’ needs. Objectives To learn the experience of patients and their caregivers of the medical care received in the Gregorio Maranon Hospital Demyelinating Unit. Method we designed a focus group with 26 participants incidentally recruited from the Gregorio Maranon Hospital Demyelinating Unit: 8 with low physical disability, 8 with high physical disability and 10 caregivers. Information was collected regarding three main topics: information, clinical care and medical team. Results High satisfaction was found among all participants with most of the medical care and with the professionals of the MS Unit. They agreed with the interventions they were offered but they considered that physical rehabilitation and psychological support must be offered, not only to MS patients but also to their caregivers and family. They also asked to emphasize transdisciplinary care. Conclusions This information defined the aspects of medical care that participants perceived as quality-care and the goals the Unit needs to achieve in the future.