FND is commonly encountered in the clinical setting
This analysis of physicians’ experiences and perspectives regarding patients with FND revealed intriguing insights, most importantly demonstrating the high frequency with which FND is encountered by physician’s practicing in Saudi Arabia. Notably, 44% of neurologists in our study reported encountering patients with FND at least once a month or more frequently, while 18% and 23% reported encountering such patients once a week and more than once a week, respectively. This finding is consistent with a study conducted in Scotland, UK, over a period of 15 months, which recruited more than 3,000 patients. The study demonstrated that functional symptoms were the second most common presentation, following headaches, for patients referred to neurology clinics [22]. A significant proportion of participants in our study with less than 5 years of experience reported frequent encounters with FND patients. This finding contrasts with a prior study conducted in Egypt in 2023 23, a country with a somewhat similar cultural background. The Egyptian study, which primarily involved psychiatrists and a few neurologists, revealed that among participants with 1 to 5 years of clinical experience, the majority reported encountering only 1 to 5 FND patients annually.
Several factors may have contributed to the high frequency of cases encountered in our study population. These include a growing recognition and awareness of FND, a more refined diagnostic process, and increased access to healthcare resources. Additionally, the specialized nature of the healthcare settings in our study likely contributed to this high frequency. Most of our participants practice in tertiary referral hospitals and academic university teaching hospitals, which often attract complex cases. This may result in a higher volume of referrals and, consequently, an increased frequency of encountering FND patients compared to general practice settings.
Interestingly, only 8% of responding physicians reported the presence of an associated non-functional neurological disease in the patients they encountered as a predictor of FND. This finding is somewhat unexpected given the well-documented overlap between FND and other non-functional conditions, such as Parkinson’s disease and Multiple Sclerosis [24, 25]. This highlights the necessity for thorough follow-up of these patient and to remain open to the possibility of a secondary diagnosis to ensure comprehensive patient care.
The veiled truth
Our study findings indicate that although the majority of surveyed physician used the term FND in clinical documents (64%), there was a greater variation in the terminology used by physicians to explain the diagnosis of FND to their patients. While many physicians (43%) stated they used the term “functional neurological disorder” with patients, others preferred using “stress related symptoms” (20%), and “medically unexplained symptoms” (15%). This finding contrasts with the previously mentioned study from Egypt [23], where 37.5% of the surveyed physicians preferred using the term “conversion disorder” when discussing FND cases with their colleagues. In contrast, only a minority of our sample referred to it as such, with 10% using the term in their documentation and 10% when discussing the diagnosis with patients. The variability in terminology used to explain the diagnosis to patients may indicate a discomfort in disclosing the diagnosis. This discomfort can arise from several factors, including uncertainty about the condition, difficulty in explaining the diagnosis in Arabic (as medicine is taught and practiced in English in the country), challenges in conveying the complex nature of FND to patients, or a lack of confidence in their understanding of these disorders. Furthermore, heterogeneity in labelling and framing, reflecting varied conceptualizations of FND, was observed in a study where international experts had less than 50% agreement on the terminology used for diagnosing patients with Functional Cognitive Disorders [26].
Various terminology and explanatory models have been used by physicians to convey FND diagnosis to patients. A recent study [27] discussed the multiple explanatory models utilized. Examples of these include, the ‘Multisystem Stress’ approach which interprets FND through physiological stress responses within the previously mentioned biopsychosocial paradigm [19]. Others include the ‘Sensitized Alarm’ and ‘Malfunctioning Software’ approaches which are based on a neuroscience perspective. These approaches can aid in effectively communicating the diagnosis of FND to patients, helping them to comprehend this complex condition.
Traditionally, physicians have faced challenges in confirming the diagnosis with confidence and certainty, and in effectively communicating the diagnosis of FND – and yet this is vitally important to patient care. Inadequate communication, delays in diagnosis, and discomfort in explaining the diagnosis significantly contribute to poor patient prognosis [28]. These factors hinder the patient’s ability to comprehend, accept, and actively participate in their treatment. Moreover, fuelling diagnostic uncertainty contributes to lack of trust, prompts patients to seek further diagnostic tests and second opinions, with the risk of exposing the patient to iatrogenic harm and also adding to the burden of the disorder. Research indicates that providing a clear diagnosis can significantly enhance patient engagement. Moreover, it has been emphasized that discussing FND as the diagnosis at an early stage leads to better patient acceptance [28].
Considering that FND is now a “rule-in” diagnosis, positive diagnostic criteria should be utilized [13], which in turn would minimise diagnostic delays and enhance the overall management. FND is relatively unfamiliar to patients and their families and is still perceived by many healthcare workers as a purely “psychosomatic” illness [5, 7]. Many FND patients report negative experiences with their healthcare providers and describe feeling stigmatized, being made to think that they are imagining the symptoms, or that it is “all in their head” [29]. Furthermore, experts have shown that explaining to the patient that their weakness stems from “stress” lacks understandable reasoning [28]. Moreover, stigmatization by healthcare professionals can create significant barriers and exacerbate the suffering experienced by FND patients, ultimately leading to poor treatment adherence and suboptimal patient outcomes [28, 29].
To combat this, it is crucial to have comprehensive understanding of how to effectively communicate the diagnosis of FND and educate patients, family members, and healthcare professionals about this condition. It is vital for trainees and healthcare providers to be prepared to actively listen to and empathize with patients’ past experiences. Direct and stigma-countering communication techniques must be used when delivering the diagnosis, such as explicitly affirming the reality of the patients’ symptoms [30]. In addition, our results demonstrated that physicians who had a clear and structured management care plan for FND patients were significantly more comfortable disclosing the diagnosis to their patients compared to those who lacked such plans. This may indicate that these physicians had a higher exposure, hence more experience in managing FND patients, or have access to the required resources to manage these patients.
Dispelling the myths
In our study, we explored cultural and supernatural beliefs and misconceptions associated with FND. A considerable number (42%) of our surveyed physicians indicated that their patients with FND attributed their symptoms to the impact of the evil eye or black magic. Notably, cultural beliefs such as supernatural powers, involving concepts like black magic and the evil eye, continue to influence patients. In a study conducted in Saudi Arabia [31], investigating beliefs concerning epilepsy, a considerable number of participants maintained the belief that the disorder was caused by possession of “jinn”, irrespective of their educational background and understanding of the condition. The study noted that the majority of participants acquired information about epilepsy from informal sources rather than healthcare professionals. This emphasizes the crucial role of medical education in correcting misconceptions.
Furthermore 26% of physicians in our study reported that their patients believed their FND symptoms were caused by vaccines they had received. Multiple reports describing FND occurring after vaccination have emerged amidst the rise of COVID-19 [32,33,34]. It is worth noting that FND following vaccinations have been documented in the pre-COVID era as well [35,36,37], highlighting that this is not a new phenomenon. The “biopsychosocial model” proposes that FND arises from a complex interaction of biological, psychological, and social factors [19]. This framework helps explain how factors such as biological predispositions, psychological distress, physical triggers and social influences may contribute to the observed increase in FND cases following COVID-19 vaccination.
Additionally, while FND can affect both men and women, there is a general observation that FND is more commonly encountered among women [38]. The reported female-to-male ratio ranges from 2:1 to 10:1 [10]. In our study, most physicians reported that the majority of the FND patients they encountered were females. The higher prevalence of FND among women has been attributed to a complex interplay of factors, including potential biological influences, as well as social and cultural determinants [40]. Societal and gender-specific risk factors, such as the increased likelihood of women seeking medical attention and experiencing trauma or abuse, which is frequently associated with FND, must be considered [41]. Additionally, it is unclear whether this disparity is partially due to gender bias within the medical field. There may be a tendency to hesitate in diagnosing FND in men, while sometimes dismissing women’s complaints as medically unexplained [42]. This historical discrepancy can be traced back to the dominance of Freudian theories, where “hysteria” was perceived as exclusive to women [43]. Moreover, a cohort study exploring the trajectories of patients with somatic symptoms found that women were less likely to receive both diagnostic investigations and a diagnosis [39]. Furthermore, research has shown that physicians were more inclined to perceive women, compared to men, as having a medically unexplained condition when presented with identical clinical vignettes [42]. These findings emphasize the importance of basing clinical judgments on objective grounds rather than relying on gender as a diagnostic criterion.
Lastly, healthcare providers indeed play a crucial role in addressing these attitudes, correcting misconceptions, and offering patients and their family’s evidence-based information, all while maintaining a non-judgmental approach. Healthcare providers can help patients navigate the complicated interplay between cultural beliefs and scientific understanding by encouraging open communication, thereby improving access to appropriate medical care and support. This can be achieved, all while recognizing and addressing any potential biases in the diagnosis and treatment of FND, to ensure equitable healthcare for all individuals, irrespective of their gender.
The missing piece
Patients with FND experience disability and impaired quality of life more than those with other neurological conditions [2, 44]. The high burden of FND also translates into substantial economic costs. It has been reported that the annual total cost for FND was similar to other demanding neurological disorders, and that annual cost has been increasing at a higher rate than for any other neurological disorder [14, 45]. Despite the disabling nature and significant economic burden of FND, several international studies have demonstrated suboptimal knowledge among healthcare workers, particularly regarding disease understanding and advanced management strategies [46, 47]. Furthermore, a study conducted across three different centres in Scotland revealed that FND was, on average, the most commonly diagnosed condition seen by a neurology trainee as an inpatient consultation, accounting for 18% of cases, surpassing epilepsy (14%), primary headache disorders (9%), and neuroinflammatory conditions (6%) [9]. Moreover, a study surveying French junior neurologists, revealed that 45.5% never received any dedicated teaching on FND [48]. Similarly, our findings demonstrated that 58% of the trainees have never received dedicated teaching on FND, and 47% have never undergone bedside or clinical teaching on the disorder. In the absence of dedicated training, physicians may feel inadequately prepared to offer the essential support and guidance required by their patients, leading to persistent barriers for patients seeking diagnosis and treatment. To deliver optimal patient care, further teaching and education of health professionals about FND is required to improve the management of FND and to enhance diagnosis [5, 7]. It is crucial to improve awareness, understanding, and provide comprehensive educational programs to enhance the management and outcomes of individuals with FND. Furthermore, there is a need for further development of specific curricular resources targeting neurology trainees to address the identified gaps and promote more effective care for patients with FND [49,50,51].
Moreover, our findings indicate a correlation between the professional and training backgrounds of consultants and trainees and the existence of a well-defined, organized care plan for patients with FND. Physicians who practiced or received training at tertiary referral hospitals were notably more likely to have such a management plan compared to those who did not practice or undergo training in these centres. The observed disparity in the presence of structured care plans suggests that the training environment plays a crucial role in equipping physicians with the necessary knowledge and skills to effectively diagnose and manage FND cases. According to previously published literature, dedicated FND training significantly enhances knowledge and confidence in the assessment and management of FND patients, both immediately after the course and at a 6-month follow-up. One of the most effective techniques proposed was simulation-based multidisciplinary teaching courses [51].
To illustrate further, a survey conducted on neurology trainees and recent neurology residency graduates in the US, aimed to assess their level of education on functional seizures, and a subtype of FND, this study showed that although 82% of the trainees had some information on the topic, 77% reported lack of training in the aspect of treatment and 54% reported no instruction on the of interdisciplinary management of patients [49]. Furthermore, in the absence of dedicated training, physicians may feel inadequately prepared to offer the essential support and guidance required by their patients.
Incorporating education about the underlying mechanisms of FND and evidence-based treatment methods into medical schools and the training of other healthcare professionals is likely to enhance patient outcomes and increase satisfaction among healthcare providers [51]. Historically, FND was a “diagnosis of exclusion”, however, there has been a shift towards a positive evidence diagnosis, with the availability of various bedside tests demonstrating positive signs of FND, and some may hold a therapeutic value to patients when disclosed appropriately [52, 53]. Growing evidence supports that an integrated multidisciplinary management plan [17, 54, 55] that includes approaches such as cognitive-behavioural therapy [56], physical [57, 58], occupational [59], and speech therapy [60], along with psychological support, and medication management is the most effective approach.
Study limitations
Our study has some limitations. The reliance on self-reported data obtained through an online questionnaire, introduces the potential for response bias, as participants may have provided inaccurate or incomplete information. The survey distribution methods, such as using email systems, WhatsApp groups, and online platforms, may also introduce sampling bias, as not all neurologists may have been reached or chosen to participate. it’s important to note that most of the physicians who participated in our study were affiliated with academic and tertiary centres. As a result, the experiences may not be universally applicable or generalizable to physicians working in different settings. Lastly, a limitation of our study involves the case vignettes included in the survey, particularly Case 1. This case should emphasize positive clinical signs of FND rather than just the normal imaging. The two-week duration of dizziness symptoms does not meet Persistent postural-perceptual dizziness (PPPD) criteria and could be consistent with Benign paroxysmal positional vertigo (BPPV), potentially influencing our results. However, these were two real cases encountered on our inpatient service and were added for illustration purposes, exactly as they presented clinically. In summary, while this study provides valuable insights into the perceptions and experiences of neurology consultants and trainees in Saudi Arabia, its findings should be interpreted within the context of these limitations.
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