SURVEY RESULTS: Assessing diagnosis and care pathways of people living with neurological disorders

Survey Results - Assessing Diagnosis and Care Pathways

Despite the higher prevalence rate in women than in men of many neurological disorders (e.g. multiple sclerosis, migraine, Alzheimer’s disease), gender stereotypes can have a negative impact, leading to under-diagnosis, misdiagnosis and delayed treatment. Furthermore, while women experience neurological disorders differently to men (symptomatic profile, pace of progression and effectiveness of medication), women are often excluded from research.
In addition to the experience of the patient, the majority of informal care-giving roles are occupied by women who are also burdened by the gender divide.

For this reason, the European Federation of Neurological Associations (EFNA) launched a vital survey ‘Assessing diagnosis and care pathways of people living with neurological disorders in Europe‘ in February 2022.

This survey has been developed with the aim of identifying, reporting and beginning to address the varied challenges facing all affected by neurological conditions, either as patients or caregivers, from diagnosis to care pathway.


Only 1 in 5 of those living with a neurological condition have access to affordable therapeutic interventions that satisfactorily manage their condition.

92.4% of people living with neurological conditions would recommend that psychological support or counseling be offered as a support to managing adjustments to life.

84.5% of patients indicated that doctors (general practitioners) do not know enough about their condition. There is a small improvement in the perception of specialist doctors, yet a majority of patients (56.8%) indicated that specialist doctors also do not know enough about their condition. These results highlight that improved levels of education and training among healthcare professionals are needed.

89% of caregivers attend visits to doctors and healthcare professionals with their care recipient, and 39% of caregivers believe they are not taken seriously when they express concern or query therapeutic interventions.

1085 responses to the survey were received from 30 European countries. The majority of respondents were female (83%) and aged between 36 and 60 years old. 80% of responses came from patients and 20% came from caregivers.

Responses came from a diverse range of neurological conditions, though the greatest numbers came from Chronic Pain, ADHD, Restless Legs Syndrome (RLS), Migraine or headache, Multiple Sclerosis (MS) and Myalgic Encephalomyelitis (ME).

Collectively our full data set suggests there are some nuances to gender equity in neurology, most notably that females are less encouraged to visit a doctor, while being more aware of their symptoms and more engaged in research. Furthermore, our data highlights that the majority of those engaged in providing care are female (85%). Men are shown to be less aware of their symptoms, less engaged in research and believe they have fewer therapeutic opportunities.

The below report presents the results of our research. Data generated through this survey will be used to support policy and advocacy actions to address the unmet needs and challenges facing all affected by neurological conditions in relation to diagnosis, treatment and care.