“Somewhere Between an Actual Disease and a Disease”: A Grounded Theory Study on Diagnosing Functional Neurological Disorders From a Multi-Informant Perspective

Introduction

Functional neurological disorders (FNDs) represent one of the most frequent presentations in neurological wards (Stone et al., 2010). They affect 10–30% of neurology outpatients (Carson et al., 2000; Cary et al., 2019), predominantly women and individuals living in rural areas, with low levels of education, and belonging to the lower socio-economic class. The FNDs refer to several conditions characterized by sensorimotor (limb weakness and abnormal movements) or cognitive symptoms (clouded thinking, inattention, and memory difficulties) (Alluri et al., 2020; McWhirter et al., 2020). FNDs may present as attacks (American Psychiatric Association, 2013) and dissociative seizures resembling epilepsy (Brown & Reuber, 2016a; Cock & Edwards, 2018).

According to DSM-5, the symptomatology may include weakness or paralysis, abnormal movement, swallowing symptoms, globus, speech symptoms, anesthesia, sensory loss, or disturbance in visual, olfactory, or hearing functions. FNDs’ acute episodes occur when symptoms present for less than 6 months, while they are persistent if symptoms last 6 months or more. Symptoms of FNDs can trigger clinically significant distress and impairment in social, occupational, or other important areas of functioning (American Psychiatric Association, 2013; Dosanjh et al., 2021; Ganslev et al., 2020). Associated symptoms encompass chronic pain, depression, and anxiety (LaFaver, 2020). Patients report more severe psychiatric problems, such as dissociative, anxiety, mood, and personality disorders (Brown & Reuber, 2016b). FNDs’ symptoms mimic brain and nervous system disorders but occur without organic disease (Reuber et al., 2007). The DSM-5 diagnostic criteria for FNDs include the absence of clinical evidence for neurological or medical conditions and symptoms or deficits affecting voluntary motor or sensory function (American Psychiatric Association, 2013).

Initially, FNDs were considered psychogenic, attributed solely to psychological factors. The Freudian model of conversion was a prevalent psychological approach, suggesting that emotional stress is converted into physical symptoms. This perspective is still implicit in the DSM-5’s alternative conversion disorder (CD) definition. However, recent scientific explanations have shifted toward neuropathophysiological models, challenging the psychological conceptualizations of FNDs (Cretton et al., 2020). It is now understood that FNDs’ development involves complex interactions between biological, psychological, and social factors.

Reaching an FND diagnosis is challenging for healthcare professionals (HPs) due to the absence of organic pathology and unambiguous clinical evidence. To this confusing factor, the literature adds HPs’ lack of awareness of the disorders (Barnett et al., 2022), contributing to the high rate of misdiagnosis, unnecessary iatrogenic harm, and inadequate treatment (Lehn et al., 2020). On the one hand, some HPs still interpret FNDs as primarily associated with psychological factors and beyond their clinical and professional reach (Rawlings et al., 2018). In this context, patients are more likely to pass from one professional to another without receiving clear, honest information or effective treatment (Russell et al., 2022). On the other hand, HPs, even considering FNDs as psychogenic, fear missing other relevant diagnoses and complain about the lack of evidence-based therapeutic options (O’Connell et al., 2020).

Patients are not exempt from perceiving the effects of these diagnostic challenges. Many share a sense of uncertainty surrounding the diagnosis and believe it to be an enigma to the medical community (Rawlings & Reuber, 2016). Contextually, patients often report feeling ignored or doubted by HPs.

FNDs emerge as prevalent yet intricate presentations in neurological wards, affecting many neurology outpatients with diverse symptomatology. Once considered psychogenic, these disorders now reveal a complex interplay of biological, psychological, and social factors, challenging traditional conceptualizations. An integrated multidisciplinary approach, recognized as desirable in the literature (Russell et al., 2022), holds the potential to not only navigate the diagnostic complexities but also facilitate appropriate interventions for affected individuals (Canna & Seligman, 2020; Ganslev et al., 2020; LaFaver, 2020; Lehn et al., 2020; Russell et al., 2022). This approach aligns with the evolving understanding of FNDs.

However, while the merits of a multidisciplinary approach are acknowledged, a critical gap remains in understanding the dynamics and interactions that characterize the care pathway for FNDs. The need for enhanced dialogue between the perspectives of patients and HPs becomes paramount, underscoring the necessity for comprehensive and holistic management strategies. To bridge this gap, the current study takes on the role of an investigative torchbearer, embarking on a multi-informant journey to explore this issue. Adopting a multi-informant perspective, the study seeks to illuminate the nuanced interconnections between patients’ experiences and HPs’ clinical understandings. This holistic endeavor addresses a notable limitation of previous research, which has predominantly focused on a singular viewpoint: HPs or patients.

Methods

A constructivist grounded theory (GT) study was designed (Charmaz, 2014; Keane, 2022). In selecting GT methodology for our study, we aimed to employ a research approach that would allow us to explore and uncover the intricacies of the phenomenon of interest in a comprehensive and contextually rich manner. GT was deemed suitable due to its inherent flexibility and ability to generate theory directly from data (Charmaz, 2014; Keane, 2022; Mills et al., 2006), which aligns with the complex and evolving nature of FNDs. This approach enables us to delve beyond preconceived notions and theories, facilitating the emergence of novel insights into the diagnostic challenges and care dynamics associated with FNDs. Constructivist GT emphasizes interpreting data within specific contexts, capturing diverse perspectives and multiple realities (Charmaz, 2017). In the constructivist approach, researchers play an active role alongside participants, contributing to the research process and sharing in constructing meaning within the study’s context (Thornberg, 2012).

Results

Study Sample

Combining the initial and theoretical sampling, 28 individuals were invited to participate, with 24 ultimately enrolled: 7 patients and 17 HPs (six neurologists, two physiatrists, five psychiatrists, two general practitioners, and two psychologists). Demographics are shown in Tables 1 and 2.

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Table 1.

Patients’ Characteristics.

Code	Age	Gender	Education	Work	Comorbidities	Months from symptoms onset and diagnosis
PZ01	22	F	Tertiary	Student	/	4
PZ02	46	F	Secondary	Housewife	Fibromyalgia	5
PZ03	28	M	Secondary	Employee	/	6
PZ04	38	F	Secondary	Employee	/	84
PZ05	48	F	Middle school	Employee	/	2
PZ06	29	F	Middle school	Employee	/	1
PZ07	29	F	Secondary	Employee	Incontinence	25

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Table 2.

Healthcare Professionals’ Demographics.

Code	Profession	Gender	Age (years)	Work experience (years)
MD01	Neurologist	M	60	30
MD02	Neurologist	M	39	10
MD03	Neurologist	F	37	6
MD04	Neurologist	M	41	13
MD05	Neurologist	M	43	10
MD06	Neurologist	M	42	7
MD07	Physiatrist	F	49	21
MD08	Physiatrist	F	38	10
MD09	Psychologist	M	51	19
MD10	Psychiatrist	F	37	9
MD11	Psychiatrist	F	45	13
MD12	Psychiatrist	M	35	2
MD13	Psychiatrist	F	49	17
MD14	Psychiatrist	M	65	36
MD15	Psychologist	F	36	4
MD16	General practitioner	F	46	24
MD17	General practitioner	F	43	10

Discussion

Our study sought to elucidate the factors contributing to the limited adoption of a multidisciplinary approach in managing FNDs. According to our analysis, it is because dealing with FNDs is a process of negotiating meanings and care which hinged on the diverse ontological perspectives that participants held regarding FNDs. HPs and patients faced the task of navigating and reconciling the contrasting perspectives and conceptual frameworks surrounding FNDs. The data underscored the difficulty in finding common ground and achieving mutual understanding among the various viewpoints, creating a challenge in establishing a unified approach to FNDs. The conceptual outcome of this process is described as a “dissatisfying dichotomy,” illustrating that both HPs and patients are left with limited room for a comprehensive understanding of FNDs and agreeable treatment options. The “dissatisfying dichotomy” suggests that the division between contrasting viewpoints contributes to dissatisfaction among both HPs and patients. The binary approach to FNDs, characterized by reductionist views and an exclusive focus on either the body or mind, doesn’t meet the needs and expectations of either group.

By tracing the chronological evolution of patients’ experiences, we discerned how the journey toward FND diagnosis is not solely a medical phenomenon but a complex interplay of emotions, communication, and healthcare dynamics. As patients navigated the healthcare system, their narratives revealed how interactions with HPs, in terms of clinical reasoning and interprofessional relationships, contributed to constructing meaning around their condition. This entwining of narratives and healthcare practices underscored the crucial role of contextual factors, including patient–HP dynamics (Figure 1).

In trying to word the disorder, the FND label was perceived as ambiguous and subject to individual interpretations. The diagnosis usually left the patients with a sense of incomprehension, surprise, and incredulity: many found it hard to believe or accept that “they could do this to themselves.” The common suggestion of psychological care or psychotherapy was encountered with suspicion or shame by most, who often entertained (preferred) different (organic) explanations. This aligned with the study of Nielsen and colleagues (Nielsen et al., 2020), who showed that patients of a London hospital were generally dissatisfied with psychological causes and felt misunderstood by HPs. Neurologists diagnosed FNDs based on the absence of organic abnormalities, which aligned with the context of neurology and their disciplinary framework.

Additionally, investigating “stressful factors” in patients’ life histories often reinforced the diagnosis, predominantly viewed as psychogenic. This finding aligns with Lehn and colleagues (Lehn et al., 2019), who showed that 56% of participants defined FND as primarily a psychiatric or psychological problem. Often, the neurologists were frustrated by dealing with a problem they defined negatively: FNDs were what people had when “nothing was there” and something that was “not their problem.” HPs to whom the patients were later referred (psychiatrists, GPs, and physiatrists) tended to share such a “negative definition” of FNDs and a psychogenic interpretation of the problem, with significant consequences on the care pathway. Psychiatrists, for instance, were said to rarely take care of these patients as they do not fit in the type of (severe) diagnosis they usually deal with, while physiatrists found it hard to see FND patients as their patients “to have to move a body” when the motivation (the mind) is lacking (is the problem). All of this contributed to generating a short circuit where patients were left with scarce options for treatment besides psychological care or psychotherapy.

Our analysis generated an interpretation of perceiving FNDs from a dichotomous perspective, marked by reductionist views and a singular emphasis on either the body or the mind. This tendency has significant implications for the experiences of all parties involved and the care pathway. A dualistic perspective that separates the mind and body in illness perception leads to the belief that symptoms are either solely psychological (psychogenic) or purely physical (neurogenic, organic, somatic, etc.). Despite more recent biopsychosocial explanations for the etiology of FNDs, the prevailing understanding of an FND diagnosis continues to be influenced by a dualistic framework. This contributes to a fragmented approach to disease management and overall dissatisfaction among all actors involved.

Within a biomedical intake, a dualistic interpretation does not only imply an alternative and equivalent choice (either the body or the mind). Still, it underlies a hegemonic understanding of what is real (the organic) and has value (Moretti, 2013, 2019; Quaranta, 1999, 2005). This infers a question of legitimacy for those suffering from an FND diagnosis. In our research, this was implicit in the delegitimization of the disorder by HPs who did not see it as “real,” “worth it of their time,” or in the way they referred to this pathology and patients when talking with their colleagues (“they are crazy,” “you can ‘sniff’ them”), as well as in many patients’ ambivalence toward psychogenic explanations and their experience of being discriminated by HPs, also reported in other contexts (Rawlings & Reuber, 2016).

Besides, a dualistic interpretation does not account for the “social role” even when it comes to readings that seek to integrate the organic and mental dimensions, as in psychosomatic definitions (Quaranta, 2005). This is important for a disease diagnosed predominantly among individuals with vulnerabilities with prominent social components: women, individuals living in rural areas, with low cultural levels and poor socio-economic conditions, migrants, etc. (McLoughlin et al., 2023). This dimension emerges in the (actual or hoped for) social implications of the diagnosis: a male patient finally saw his boss reducing his workload, a woman who “had always used her hands for others” stopped using them “as a cry for help,” a migrant single mother who struggles with the consequences of processes of marginalization, etc. In this context, the ambiguity of patients toward psychological explanations and solutions could be read as a refusal to individualize the problem: it is the context that causes discomfort, not the person’s inability to adapt to it. This contributes to sufferers preferring organic explanations, seen as more legitimizing, as suggested for other pathologies with similar characteristics, like chronic fatigue syndrome or fibromyalgia (Moretti, 2014; Quaranta, 1999).

Inadequate psychological explanations that oversimplify FNDs (e.g., attributing it solely to stress) and explanations disregarding the participants’ narrative can lead to dissatisfaction among all parties involved. Our research revealed that physical conditions or events were often believed to contribute to symptom onset, even when psychogenic explanations were accepted. On the other hand, explanations centered solely on “stress,” and similar factors failed to acknowledge the role of contextual factors. They heightened the perception that the patients themselves were to be blamed.

A potential solution is hinted at within our data, although not fully explored by our participants. Listening to the patients’ narratives and helping them construct meaning from their illness experience is crucial, as recommended elsewhere (Nielsen et al., 2020). HPs may send patients for further investigations when they feel it would appease them (Barnett et al., 2022). However, patients interpreted this as “buck-passing” and lost confidence in the HPs. The authors recommend openly discussing their perceptions and wishes with patients to legitimize their experience and facilitate successful care relationships. In our study, patients who felt listened to tended to feel more positively about the diagnosis. Besides, some professionals perceived offering specific forms of care (e.g., physiotherapy) to acknowledge and “care for” the patients’ perspective. At the same time, they also talk about the importance for HPs to be open to dialogue with patients and include their perspectives in defining the problem and the solutions.

An integrated interdisciplinary approach, as highlighted in the existing literature (Russell et al., 2022), offers the promise not only of navigating diagnostic intricacies but also of enabling suitable interventions for those impacted by FNDs (Canna & Seligman, 2020; Ganslev et al., 2020; LaFaver, 2020; Lehn et al., 2020). The empirical basis for a non-dualistic approach to mind–body medicine is evolving, suggesting that a comprehensive understanding of health and well-being may soon necessitate a holistic approach (Fricchione, 2023). This interdisciplinary approach holds the potential to mitigate the dissatisfaction arising from fragmented and compartmentalized care experienced by our participants. It signifies a comprehensive strategy that could address the concerns of all involved parties and enhance the overall quality of care provided.

However, adopting such an interdisciplinary approach is not without its challenges. As emphasized elsewhere (Canna & Seligman, 2020), embracing a comprehensive understanding of FNDs necessitates a fundamental reevaluation of the medical ontology underpinning the assessment of symptoms. In our study, the pervasive body–mind division inherent in conventional classification systems, the varying weight attributed to organic and psychological factors, and the oversight of the “social” dimension collectively contribute to significant deficiencies within the care pathway (Chen et al., 2023).

This brings to light the ongoing debate between the medical and social models of care (Engel, 1977) in the realm of FND management. The medical model tends to emphasize the physiological aspects of the disorder, often limiting its scope to identifying and treating specific physical anomalies. This approach may overlook the intricate interplay between psychological and social factors that contribute to the development and experience of FNDs. On the other hand, the social model of care posits that biological factors do not solely determine health but are profoundly influenced by social, cultural, and psychological dynamics (Carr et al., 2023). In the context of FNDs, this model advocates for an approach that addresses the physiological symptoms and encompasses the individual’s psychological well-being and social context.

The tension between these models underscores the complexity of FND management and the need for a multidimensional approach that bridges the medical and social aspects. A shift toward an integrated care framework, as suggested by the interdisciplinary approach, acknowledges the limitations of both models when applied in isolation (Fricchione, 2023). By acknowledging the interconnectedness of physiological, psychological, and social factors, an interdisciplinary approach aims to provide a more holistic understanding of FNDs and a more effective care pathway. This shift requires healthcare practitioners to transcend the confines of traditional medical ontologies and embrace a more inclusive perspective that accounts for the multifaceted nature of FNDs and the experiences of those affected by them.

Conclusions

Our study aimed to uncover the reasons behind the underutilization of a multidisciplinary approach in managing FNDs, despite its proven benefits and the negative impact on quality of life. Besides organizational factors, we discovered that different medical specialties hold varying perspectives on illness, resulting in ineffective approaches to FNDs. This situation aligns with Popper’s notion that conflicting theories can impede progress (Canna & Seligman, 2020; Popper, 1995). In fact, an FND is still understood and approached in varied ways by different individuals or groups. These conceptions are not static but dynamic and evolving, impacting how an FND is perceived, diagnosed, and managed. This highlights the complex and multifaceted nature of diagnosing and managing FNDs and emphasizes the need for a comprehensive approach considering various viewpoints.

Given the diverse definitions of FNDs across medical disciplines, a pluralistic approach becomes necessary to acknowledge the relative perspectives of each HP. Effective management of FNDs requires a multidisciplinary approach encompassing three key components. First, open and effective communication between HPs and patients is crucial for establishing a strong therapeutic relationship. Second, HPs involved in FND patient care should receive training programs focusing on both clinical and relational aspects of FNDs. Finally, structured care pathways based on integrated biopsychosocial models involving multiple healthcare professionals must be implemented for optimal outcomes.

However, to achieve success with these components, adopting a new shared paradigm that addresses different ontological assumptions and engages in meaningful dialogue with other practitioners and patients is essential.