What are the experiences of people with motor and sensory functional neurological disorder? A systematic review and thematic synthesis of qualitative studies

“…question was broad a systematic rather than a scoping review was chosen because early preparatory searches suggested sufficient high-quality published papers were available for analysis and a rigorous systematic approach and appraisal could synthesise current knowledge and identify gaps [40].”

“ENTREQ (Enhancing transparency in reporting the synthesis of qualitative research) checklist [39] has also been completed and is found in Supplemental Appendix 1.”

“Full texts were similarly assessed by CB and AT independently and reasons for exclusion were recorded in Rayyan and are described in the PRISMA diagram (Figure 1, generated using PRISMA 2020 Application [45]).”

“…specifier of study design (S) was employed to achieve focussed findings as this has been described as more appropriate for qualitative reviews [41]. terms and definitions: Motor functional neurological disorder encompasses both functional movement disorders (FnD-movt) and functional…”

“Many navigated an arduous and uncertain path, through health systems and different clinicians to receive a diagnosis of FND [48–52] or subtype such as PPPD [46, 58].”

“Overall paper quality was moderate to high, with recent papers demonstrating a more robust description of methodology and author reflexivity in keeping with advances in validation of qualitative research [61].”

“A meta-analysis of patient trust in healthcare professionals found it to be correlated with satisfaction, health behaviours and reduced symptom severity [78].”

“Newer explanatory models informed by detailed clinical and neuroscientific techniques describe how a range of previous sensitising events including physical injury, medical illness and physiological triggers may contribute to abnormal predictions of sensory data and body-focussed attention [10, 11].”

“Newer explanatory models informed by detailed clinical and neuroscientific techniques describe how a range of previous sensitising events including physical injury, medical illness and physiological triggers may contribute to abnormal predictions of sensory data and body-focussed attention [10, 11].”

“Although changing definitions and labels have affected epidemiological studies, the incidence of FND is estimated to be 4–12 per 100,000 population [3], accounting for somewhere between 6% and 16% of neurology outpatient consultations [4, 5].”

“Furthermore, whilst psychological stress and trauma is common in people with FND, such experiences are more likely to play a role in sensitising and perpetuating symptoms, rather than representing a unifying causal pathway [13, 14].”

“Patients with FND experience considerable disability, distress and persistent symptoms [16, 17].”

“Qualitative research has the potential to highlight marginalised experiences, restore agency and connection, and guide care and research which addresses what is most important to individuals affected by a condition [26].”

“Similarly, recent functional neuroimaging studies have established dynamic abnormalities in multiple brain networks and confirmed FNDs are not under voluntary control [12].”

“…recently defined syndrome which includes chronic subjective dizziness and phobic postural vertigo. it is thought to be a chronic maladaptation to an initial medical or psychological trigger leading to persistent vestibular symptoms and is considered within the spectrum of functional disorders [35].”

“This date was chosen as there has been a renewed interest in FND since the year 2000 [42] and leading experts in the field identify the millennium as a turning point in modern conceptualisations and diagnostic categories [43].”

“Various bio-psycho-social models have been hypothesised and suggest FND results from dysfunction of higher-order motor and limbic processes in complex interaction with early life adversity, stress, bodily experiences and expectations [34].”

“Patients with FND experience considerable disability, distress and persistent symptoms [16, 17].”

“Although there is debate about what constitutes data in qualitative reviews, this study followed guidance of Thomas and Harden [33] and included results and conclusions sections from studies.”

“Although changing definitions and labels have affected epidemiological studies, the incidence of FND is estimated to be 4–12 per 100,000 population [3], accounting for somewhere between 6% and 16% of neurology outpatient consultations [4, 5].”

“The symptoms can appear similar to neurological disorders such as multiple sclerosis (MS) and Parkinson’s disease, however utilising specific examination techniques assessing for “positive” clinical findings, motor and sensory FND can be reliably diagnosed [2].”

“Such perceptions are related to outcomes in many conditions including FND [71, 72].”

“For example, as ID3, a 36 year old woman with coordination, mobility and intermittent paralysis and slurred speech described feeling “Guilt, being a fraud, a timewaster, that the whole thing is something I’ve manifested and in some way I’m perpetuating its ongoing ” [55].”

“In order to capture detail on the relative methodological strengths of each paper an adapted scoring system was used, similar to that employed in other qualitative systematic reviews [59, 60].”

“Functional sensory symptoms include altered or absent sensation in the affected area [30].”

“Motor FND includes symptoms such as paralysis or weakness, gait disorders, tremor, myoclonus, tics (jerky movements) and dystonia [21].”

“This date was chosen as there has been a renewed interest in FND since the year 2000 [42] and leading experts in the field identify the millennium as a turning point in modern conceptualisations and diagnostic categories [43].”

“Such a complex, multifactorial and still uncertain pathophysiology creates a challenge in communicating cause in a clinical interaction [13].”

“Functional communication, swallowing and cough disorders [31], drop attacks [32] and functional forms of dizziness [33] affect sensory or motor function and are increasingly recognised as functional disorders by experts in their respective fields.”

“…remains limited there have been some promising results from increasingly powered trials and longitudinal studies of inpatient and day hospital multidisciplinary interventions showing reductions in symptom burden, improving quality of life and patient understanding of their condition [10, 18–20].”

“Frequently occurring co-morbid symptoms such as fatigue, cognitive issues, pain, conditions including mood and post-traumatic stress disorder, and a variety of FND subtypes [22] mean that personalised formulation and treatment is important [20].”

“To date, reviews have been conducted exploring the experiences of functional seizures [29], and views of a variety of professionals [23].”

“Given FNDs can be chronic conditions with associated disability, effect on finances and quality of life [30, 81], there is a clear role for practical and functional assistance and advice, including from occupational therapy and social workers in FND treatment pathways [82].”

“Functional neurological disorders (FNDs) occur when a person develops symptoms such as paralysis, dystonia, tremors, sensory disturbance, speech problems or seizures which are not caused by neurological disease but which result in significant illness and disability [1].”

“Systematic reviews synthesising qualitative research can inform practice, identify unmet needs and future research agendas [27, 28].”

“FND experts high-light the importance of making a positive diagnosis [62] and transparently using neurological signs to demonstrate clinical reasoning [76].”

“Although changing definitions and labels have affected epidemiological studies, the incidence of FND is estimated to be 4–12 per 100,000 population [3], accounting for somewhere between 6% and 16% of neurology outpatient consultations [4, 5].”

“Explanations presented by healthcare professionals often did not offer clarity [48, 50–54].”

“This has been highlighted in a lack of research and grants for FND, compared to other neurological disorders [66, 67] and historical factors including stigmatising language such as “psychogenic” and “pseudo” [66].”

“Participants searched for explanations, receiving incorrect diagnoses in the process, sometimes resulting in iatrogenic harm and leading them to question their own sanity [49–56].”

“Although traditionally doctors were expected to fulfil the role of expert, increasingly studies demonstrate clinician humility can predict satisfaction, trust and self-reported health [77].”

“Lupus is one of many such examples where patients also frequently face long delays and misdiagnoses [68].”

“Patient advocacy groups, bioethicists and clinicians argue for the need for further research which explores stigma, and gives a voice to people with lived experience of FND [25].”

“A recent paper on stigma in FND describes when healthcare professionals dismiss FND symptoms as “not real” patients feel invalidated, trust is broken and professionals label interactions as “difficult” [67].”

“A recent systematic review of healthcare professional experiences described uncertainty at the heart of a “vicious cycle” of lack of education and consensus, negative attitudes, buck passing and avoidance [23].”

“Findings from research in FND have illuminated brain networks linking emotions to physical states and symptoms in a wide range of disorders, through processes such as interoception, attention [84] and prediction [11].”

“Despite being a common condition, patients frequently face long delays in receiving a diagnosis [6], are sometimes given incorrect treatments and may experience iatrogenic harm [7].”

“In functional seizures experiences of stigma were related to mood, anxiety and seizure frequency [74].”

“The authors found stigma also operated through social exclusion, and coping with stigma was an additional burden, leading to a high level of self-blame and effect on identity [60].”

“Given FNDs can be chronic conditions with associated disability, effect on finances and quality of life [30, 81], there is a clear role for practical and functional assistance and advice, including from occupational therapy and social workers in FND treatment pathways [82].”

“Many navigated an arduous and uncertain path, through health systems and different clinicians to receive a diagnosis of FND [48–52] or subtype such as PPPD [46, 58].”

“Many navigated an arduous and uncertain path, through health systems and different clinicians to receive a diagnosis of FND [48–52] or subtype such as PPPD [46, 58].”

“The long journey to diagnosis described by participants in our review is reflected in other studies where mean time of 6.63 years is reported between onset of symptoms and functional motor disorder diagnosis [6].”

“Such concepts are reflected in the older labels “psychogenic” and “conversion” disorder [9].”

“This is increasingly being recognised in quantitative literature [63] but rarely, if ever contributed to a formulation in interactions described in this study.”

“A lack of person-centred care has been highlighted in a recent comparison between experiences of patients with MS and FND in the NHS [64].”

“Illness perceptions or representations refer to a person’s beliefs about their condition and how much they can influence their recovery [70].”

“A recent study demonstrated how a multidisciplinary education session utilising a bio-psycho-social explanation for people with FND and families increased ratings of understanding and agreement with diagnosis, belief in treatability and hopefulness about recovery [80].”

“The description of symptoms and explanation resonated with experience, giving validation and relief many had waited years for [47, 48, 51, 56].”

“…understandings and bridging the gulf in communication and validation of FND. Lehn and colleagues developed a brief multidisciplinary course for healthcare professionals which was effective in improving confidence and knowledge in assessing and treating FND, with changes persisting at 6 months [79].”

“Addressing the uncertainty of FND could represent a paradigm shift from pathology-focussed, de-contextualised and siloed medicine to rehabilitative, collaborative practice which embraces the fundamentally personal experience of illness [83].”

“The tendency to de-legitimise FND also affects clinician behaviour in the form of fewer referrals for physical therapy compared with MS [69].”

“I’ve seen it, because it happened at the doctors before,” reported Lara, 29, diagnosed with PPPD [53] Participants described being dismissed and discarded after an FND diagnosis was made, or other diagnoses ruled out.”

“[54] For some, a diagnosis of FND, with the associated stigma and assumptions about psychological causes, led to a fear of life-threatening diagnostic overshadowing [50–56].”

“A lack of education about FND within undergraduate and postgraduate curricula have been highlighted [65].”

“Such perceptions are related to outcomes in many conditions including FND [71, 72].”

“The description of symptoms and explanation resonated with experience, giving validation and relief many had waited years for [47, 48, 51, 56].”

“Ethnicity was described in only 4 of the papers and where specified the participants were either all or majority white [47, 51, 55, 57].”

“Frequently occurring co-morbid symptoms such as fatigue, cognitive issues, pain, conditions including mood and post-traumatic stress disorder, and a variety of FND subtypes [22] mean that personalised formulation and treatment is important [20].”

“Previous theories of FND were underpinned by a Freudian model of “conversion”; the idea of intolerable trauma or stress converted into a physical symptom [8].”

“Functional communication, swallowing and cough disorders [31], drop attacks [32] and functional forms of dizziness [33] affect sensory or motor function and are increasingly recognised as functional disorders by experts in their respective fields.”

“The description of symptoms and explanation resonated with experience, giving validation and relief many had waited years for [47, 48, 51, 56].”

“Participants searched for explanations, receiving incorrect diagnoses in the process, sometimes resulting in iatrogenic harm and leading them to question their own sanity [49–56].”

“The findings of this study are consistent with broader international research on FND, especially in terms of stigma, diagnostic difficulties, and interactions with healthcare providers [41].”

“Many FND patients report negative experiences with their healthcare providers and describe feeling stig-matized, being made to think that they are imagining the symptoms, or that it is “all in their head” [29].”

“…thematic synthesis of qualitative studies of people with motor and sensory functional neurological disorder showed that the feeling of invalidation not only affected participants’ interaction with healthcare professionals but was internalised, affecting their sense of self and confidence [17].”

“The growing number of clinical trials and intervention programs is encouraging (28), though the ambiguity surrounding best intervention approaches and outcomes is felt deeply by patients, families and clinicians (29, 30).”

“Some studies have explored the experiences of individuals living with FND with reports of disbelief, misdiagnosis and feelings that it is a stigmatised disorder (Bailey et al., 2025; Foley et al., 2022; Robson & Lian, 2017).”

“6 Patient voices are now more visible through websites (Stone, n.d.), books (Rawlings et al., 2024), qualitative research (Bailey et al., 2025; Pritomanova et al., 2025), and support groups.”

“For example, qualitative studies indicate that individuals with FND frequently withdraw from social situations and physical activities to avoid triggering symptoms such as seizures, contributing to increased disability and reduced quality of life [56].”

“26,27 Patients ’ experiences of psychological therapies for FND have been explored within the CODES trial, 28 and within a psychological therapy service, 29 but there have been no published qualitative papers on patients ’ experiences of EMDR for FND.”

“…or interdisciplinary care for FMD. Existing qualitative evidence from non-interventional FMD cohorts concludes that patients experience a substantial physical and emotional burden, often accompanied by feelings of abandonment and incomprehension with the healthcare system (34, 35).”