Illness perceptions, experiences of stigma and engagement in (FND): exploring the role of multidisciplinary group education sessions 2024 Butler et al

Full title: Illness perceptions, experiences of stigma and engagement in functional neurological disorder (FND): exploring the role of multidisciplinary group education sessions

Abstract

Background
A critical first step in managing functional neurological disorder (FND) is a positive diagnosis and clear explanation using an understandable illness model. Multidisciplinary group education sessions are one way to achieve this, with some evidence they improve understanding, confidence in diagnosis and outcomes with further treatment. In many conditions, illness perceptions and stigma affect distress, functioning, quality of life and engagement. Exploring relationships between these factors could lead to deeper understanding of the impact of education.

Methods
Questionnaires assessing illness perceptions, quality of life, mood, anxiety, comorbidities, treatment engagement and stigma (both experienced and anticipated) were completed before, immediately and 1 month after a multidisciplinary online group education session for FND at a regional neurosciences centre. Free-text data on causal attributions and needs were also collected.

Results
166 patients attended online education sessions from January 2022 to July 2023; 61 (37%) completed presession surveys, 42 (25%) completed postsession and 35 (21%) completed 1 month postsession surveys. Patients reported multiple comorbidities, poor quality of life, functioning and high levels of stigma. Illness perception scores indicated FND as threatening, mysterious and unpredictable, with low personal or treatment control over symptoms. Illness coherence/understanding (mean difference 2.27, p<0.01, 95% CI 1.22 to 4.23) and engagement (mean difference 2.42, p<0.01, 95% CI 0.46 to 4.36) increased after the session. There were no significant changes in stigma, distress, sense of control or anticipated discrimination. Free-text analysis revealed stress and trauma as the most common causal attributions, followed by physical illnesses. Patients requested personalised formulations, practical disability advice, help with explaining the condition to others (eg, employers), peer support and treatment.

Conclusion
Multidisciplinary group FND education sessions potentially improve patient understanding and engagement. Clinicians should consider the possible benefits of personalised formulations and linking to practical and peer support. Further work assessing illness perceptions is needed, such as adapting measures for FND.

Open access, https://neurologyopen.bmj.com/content/6/1/e000633

 

"The majority of participants were women (72.1%), white British (68.9%) and not in full time work (78.3%), with 24.6% on long-term sick leave. Seizures (24.6%) were the most common primary FND symptom identified, with other subtypes broadly represented. The majority of participants (95.1%) reported having FND for at least 6 months, 44.3% for 1–5 years and 27.9% for >5 years. Fatigue was the most common comorbid symptom (72.1%), followed by memory or thinking problems (70.5%) and anxiety (68.9%) (figure 1). 52.5% of participants had anxiety scores meeting the abnormal threshold HADS, while 35.6% met caseness for depression (table 3). Mean scores for SF-36 were below average for most areas, except for average scores on emotional well-being (50.0%). Physical role limitation (20.5%), fatigue (26.0%), emotional role limitation (36.6%) were most affected."

 

For years and years FND was conversion and now they can educate the patients out of it?
Just 21% of patients (35 out of 166) did all 3 surveys, that says it all.

 

But, they don't have that. An "understandable illness model" is just nonsense, Scientology's "ghosts of dead aliens" is an understandable illness model. So is astrological karma, or whatever. Models without scientific validity are worthless, but they sure can be understood if you explain them to someone.

If you teach people about astrological signs, they can better answer questions about astrological signs, showing improved understanding. But this is irrelevant and obviously not a serious outcome to achieve.

Just completely worthless bullshit. They got nothing, they built this empire on lies and nonsense and they're too cowardly and self-centered to admit to the plain truth.

I call total bullshit on that. Things are never as they claim. Only 21% response rate, and this doesn't make them question anything. Just mindless nonsense all over.