Discussion
This study examined illness perceptions, engagement and experiences of stigma in people with a variety of FND subtypes attending a single multidisciplinary education session. We found small but significant changes in illness coherence and engagement suggesting the session may have contributed to improved understanding about FND, and willingness to enter treatment. Although the study lacked a control group, free-text responses suggested after the session participants felt generally better informed and wished to learn more about their individual FND, and were seeking advice on self-management, access to multidisiplinary treatment and peer support.
Comparison with other studies measuring illness perceptions
Our sample’s baseline illness perception scores were broadly similar to a previous study in both functional seizures (FS) and weakness (FW) across subscales measuring consequences, treatment control and emotional distress.13 Although direct comparison is difficult, our sample appeared to have higher levels of belief in personal control (67% mean 20.03 (our sample) vs 42% FS and 46% FW) and coherence (54% mean 13.03 (our sample) vs 32% in FS and 24% in FW) even at baseline. This may reflect increasing online FND information provision (eg, neurosymptoms.org and charities such as FND Hope, high-quality accessible webinars from the Functional Neurological Disorder Society), and increasing positive diagnosis8 compared with 2015 when the comparison paper was published. This growing online resource availability may also have implications for the education session impact, where attendees who have already researched their condition already have a high baseline theoretical knowledge. A few comments including from P3 support this “I had already researched before the session because it was 3 months after my diagnosis”.
Our sample wanted more personalised information about their FND as well as access to peer support. This indicates a potential role for a general FND session and then smaller group interventions focused on subtypes. For example a three session CBT-informed education group for functional seizures found improvement in frequency of attacks and illness beliefs related to prognosis and understanding.33 Guided self-help CBT educational workbook interventions where patients also access a few meetings with a therapist34 have been also associated with global improvement. This would suggest that personalisation of treatment, either through attending a group for a specific FND subtype or having the opportunity to discuss symptoms and formulation with a professional, is valuable.
While we did not find any change in subscales measuring hope about treatment efficacy or prognosis, evidence shows changes in these beliefs can be achieved through intensive treatment. A 4-week multidisciplinary FND treatment programme found significant improvements in perceptions related to chronicity, coherence, emotional representations and consequence.31
Relationships between functioning, quality of life, illness perceptions and stigma
Our sample reported significant functional impairment, poor quality of life and high levels of distress associated with their FND. Higher levels of stigma were associated with lower social functioning. Distress associated with FND was also linked with poorer emotional well-being and lower engagement. This supports the findings of a recent systematic review of illness representations in both functional and epileptic seizures, which found that threatening perceptions were associated with higher distress.11 Our findings also suggest the emotional and functional impact of FND is not solely related to symptoms themselves, but is also linked to the response of a person’s community, employers, family and healthcare professionals, although the direction of effect cannot be ascertained from this study. Kirmayer and Gomez-Carillo expanding on bio-psycho-social formulations in functional conditions, suggest a concept of looping where the experience of a condition and sense of agency is constantly reconfigured through interactions with physical and social experiences, including access to power and resources.35
Occupational and financial impacts of FND
Higher anticipated stigma from employers was linked to increased depressive scores on HADS. 51.7% of our sample reported serious financial consequences resulting from FND. Qualitative responses described needs for practical information on living with a disability and help in communicating about FND, including to employers. A global survey conducted by FND Hope found that 88% of participants reported work difficulties including performance issues, accidents or symptom exacerbation.36 There is increasing awareness of the need for occupational therapy within multidisciplinary management of FND.8 37 Our findings and existing literature suggest people with FND need advice on negotiating reasonable adjustments to function optimally and mitigate financial effects of their condition, including accessing benefits if appropriate.36
Factors contributing to stigma in FND
Our participant cohort experienced higher enacted and internalised stigma (SSCI-8) scores (mean 20 (95% CI 18.48 to 23.00)) compared with a group of people with Multiple Sclerosis (MS) (mean 12.23) and Parkinson’s disease (mean 12.07).26 Experienced stigma (SSCI-8) was correlated with anticipated stigma (CIASS), suggesting past experiences may contribute to future expectations. Anticipated stigma is linked to poorer quality of life in epilepsy, fibromyalgia and lupus, but can be mediated by social support.38 In our sample, higher stigma scores (SSCI-8 and CIASS) were associated with lower self-reported social functioning (SF-36). It has been suggested that experiences of stigma in FND lead to social withdrawal, reduced disclosure and self-blame.19 A recent review39 highlighted how people with functional seizures may be prone to shame and associated comorbidities such as PTSD, and experience shame-inducing and stigmatising interactions,40 which may represent a link between predisposing and perpetuating factors. Free-text responses in our study echoed these experiences, and described desire for peer connection.
The high levels of stigma participants anticipated from healthcare professionals is unsurprising given the long duration of symptoms, lack of knowledge and negative attitudes from professionals15 and discrimination identified in previous studies.8 A service evaluation of health and social care experiences found compared with people with MS, those with FND were more likely to feel misunderstood and not treated with dignity by their doctors, and had more difficulties accessing diagnosis, specialists and coordinated care.41 A recent synthesis of stigma in FND formulated that invalidating clinical interactions contribute to hesitancy in seeking help and negative self-evaluations.19
The relationship between hope, chronicity and access to treatment
The recently published Optimal Care Pathway from the UK National Neurological Advisory Group, which was a collaborative development exercise between professionals and experts by experience, identified numerous barriers to care for people with FND, including accessing community therapies and frequent discharge from services without treatment.8 Participants in our study described a lack of knowledge of FND in healthcare professionals encountered outside tertiary services, echoing the qualitative experiences of people with FND accessing non-specialist physiotherapy who described sometimes receiving inappropriate treatments and resulting harm.42 Our sample had a long duration of illness; 72.2% having had FND for more than a year. These factors may in part explain why they had low treatment hopefulness and a slightly increased anticipation of FND being a chronic condition following the education session.
A systematic review of modifiable factors of illness perceptions in chronic somatic conditions suggested psychosocial factors, information provision, satisfaction with information and quality of care are important to consider when tailoring education programmes.43 Although not specifically focused on FND, these findings in combination with correlations in our study suggest perceptions are not a discrete function of an illness itself and are instead in dynamic interaction with experiences (both positive and negative) and personal and healthcare relationships.
Future directions
Given the relationship between illness perceptions, quality of life and engagement, our study supports the need for further work in developing an FND-specific adaptation of standard IPQ-R as suggested by its authors.25 In other conditions such as atrial fibrillation adaptation has been achieved through the use of qualitative ‘think aloud’ methodology and factor analysis.25 Such adaptation could elicit more detailed and nuanced experiences of people with FND. For example, trauma which is not currently included in the list of standard causes in IPQ-R, was identified by participants as the second most common self-reported cause, after stress.
However, our survey responses were often brief and the nature and timing of the trauma was not described. The relationship between trauma and FND is complex; from historical, outdated models of conversion disorder and more recent removal of the need to identify trauma to ‘explain’ the illness in the latest iteration of DSM.44 Contemporary studies have identified higher rates of childhood maltreatment in people with FND compared with controls, but also identified a group of people for whom this is not relevant.44 More refined understandings are emerging, with implications for treatment. A recent study explored differences between patients with or without comorbid PTSD and argued for a possible trauma FND subtype.45
Participants in our study identified a link between stress and their FND as well as other mental health conditions. This may also explain the frequent requests for psychological therapy. Larger sample sizes are needed before factor analyses or new ‘cause’ items could be added to an FND-specific IPQ-R. However, our findings support those of Butler et al surveying >1000 people with FND, where most participants attributed the cause of their FND to both physical and stress/trauma-related factors.22 Taken together this strongly suggests an expanded selection of causes should be explored, including consideration of medical conditions and surgeries as triggers for FND which is increasingly recognised.46 The variety of causes and needs identified by participants and comorbid conditions in the group also highlights the role of personalised formulations and support for navigating health systems with multimorbidity.
Limitations
The survey response rate was relatively low (37%), with significant dropouts. However, this was not unexpected in a multiple time-point study with participants experiencing significant functional impairment and fatigue. The small sample size and lack of control group mean any association cannot be solely attributed to the education session. We did not repeat measures of mood, symptom burden or quality of life after the session, so relationships between those factors and illness perceptions or stigma could only be measured at baseline. Those attending an education session, and completing a survey are likely to be the most engaged and in agreement with their diagnosis. Additional studies are needed to gather the views of those who decline to attend an education session, are rendered unable to engage due to other comorbidities or face barriers within local services. The survey sample was largely white, and the survey and education sessions were provided in English only.
Our sample size may have been insufficient to detect improvements in beliefs about treatability found in the earlier evaluation.21 Recruitment for our study may have been more challenging due the sessions being online and greater questionnaire burden. Moving online may also have influenced the frequent requests for connection to others with FND, which would have been an inherent part of the prepandemic face-to-face session.
Although several of those conducting the education session were involved in writing this paper, the primary analysis was conducted by CB who had no role in the session itself, minimising bias in the analysis of results.
