Grupo focal sobre la experiencia de pacientes y familiares en la unidad de esclerosis múltiple de un hospital terciario

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 patientś needs can be different according to the phase of the disease. Ocassionally, medical-care team requirements might not meet MS patientsʹ needs.

Objectives

To learn the experience of patients and their caregivers of the medical care received in the Gregorio Marañón Hospital Demyelinating Unit.

Method

We designed a focus group with 26 participants incidentally recruited from the Gregorio Marañón Hospital Demyelinating Unit: 8 with low physical disability, 8 with high physical disability and 10 caregivers. Information was collected regarding 3 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.