Survey: EFNA: Assessing diagnosis and care pathways of people living with neurological disorders in Europe, 2022. New survey ends 30/8/24

PURPOSE OF THE SURVEY

This survey has been developed by the European Federation of Neurological Associations (EFNA) to assess the lived experience of neurology patients and caregivers in accessing a diagnosis and care pathway in Europe.

The aim is to identify, report and begin to address the varied challenges facing all affected by neurological conditions, either as patients or caregivers, from diagnosis to care pathway.
Data generated through this survey can be used to address the unmet needs and challenges facing all affected by neurological conditions.

Findings from the survey will be published on the EFNA website later this year.

The survey will be open until 19/04/2022.

PARTICIPATION IN THE SURVEY

This survey is open to anyone over the age of 18 who is living with a neurological disorder, or who is carer to someone living with a neurological disorder, that resides in Europe. The survey should take approximately 20 minutes to complete.

https://www.surveymonkey.com/r/JQW27L2

 

"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.

KEY FINDINGS:
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)."

More at https://www.efna.net/survey-results-2022/

 

Moved post

 

https://www.efna.net/survey2024/

A new survey:

The Invisible Issues of Neurological Conditions

Ends 30/8/24

Easy survey and very relevant to ME.

 

"Results of our survey on the invisible issues of neurological conditions
...
KEY FINDINGS:

• 84% of people indicate they experience stigma as a direct result of their neurological condition.

• The top 3 areas where people experience stigma are: interaction with medical professionals 46%, in employment 19%, interaction with the public 11%.

• 35% of people frequently are made to feel that it is their fault they have a neurological condition.

• The top 3 invisible physical issues are fatigue (85%), pain (74%) and sleep issues (74%).

• Health literacy in healthcare is important: 85% report medical professionals did not believe the extent or severity of their symptoms. 83% did not receive adequate treatment because they were not taken seriously.

• Health literacy among patients is important: 56% had difficulty describing symptoms to their doctor, which, in part, led to 67% of people being initially misdiagnosed!

• 71% of people with a neurological condition have had to adjust their role or work schedule because of their condition, of which only 35% report that their employer was accommodating of this change."

Article and report

 

Can't say I agree that this is an issue with health literacy. In fact it appears that medical training is a major component of this rejection of patient experience. Some of it is very black and white about it. And I think most would agree that physicians are taught to take medical issues seriously, so again not an issue with literacy, since a lot of it is very arbitrary.

Also not related to literacy. A competent vocabulary hasn't been built, and this is not something patients can do. Well, we can, but it'd just get ignored entirely. In fact when I read or listen to patients' descriptions, they usually do rather well at it given the difficulties involved. In fact physicians who experience those issues have the exact same frustrations, which places the problem squarely with the medical profession since there is no amount of training that can make it possible for someone to explain the concept of color to someone who has never seen.

Because it's all too easy to conclude that all it takes is a quick update module, one for patients and one for physicians, when the problem has nothing to do with that. Which is all too often a problem where health care doesn't have the technology to understand a problem: they simply focus on things unrelated to the problem, trying to find alternatives to the problem as it is, which makes then end up ignoring the problem and creating the usual loop of failure.