Position statement
Posted: Nov 20, 2024
Natasha Ruth Saunders MD MSc, Anne Kawamura MD, Olivia MacLeod MD, Alexandra Nieuwesteeg MD, Claire De Souza MD; Canadian Paediatric Society, Mental Health and Developmental Disabilities Committee
Canadian Paediatric Society 30(4):331–337
Somatic symptom and related disorders (SSRDs) pose significant challenges in paediatric health care due to their impacts on child and adolescent well-being, functioning, and family systems. This statement offers comprehensive guidance to health care providers on the assessment and management of SSRDs as well as communication strategies for clinical encounters. Specific SSRD diagnoses are outlined along with common clinical presentations and recommended approaches to medical investigations and patient/family communication early in the diagnostic journey. Evidence-based treatments for SSRDs once a diagnosis has been established are delineated. Psychoeducational approaches that help to shift the onus of care from unnecessary medical testing and procedures, thereby shortening the diagnostic journey, and promote more functional, rehabilitative care therapies, are reviewed. Specific strategies to support patients and their families and validate their perspectives are outlined.
Keywords: Conversion disorder; Functional neurological symptom disorder; Mind-body; Paediatrics; Somatization
EDS, Ehlers-Danlos syndrome; FNSD, functional neurologic symptom disorder; IBS, irritable bowel syndrome; PNES, psychogenic non-epileptiform seizures; POTS, postural orthostatic tachycardia; SSRD, somatic symptom and related disorder
Somatic symptom and related disorders (SSRD) refer to a category of mental disorders that commonly affect children and adolescents. Individuals with SSRDs have high health system utilization. Patients present across the care continuum in primary care, consultant paediatric care, emergency departments, and hospital inpatient units[1]-[3]. This position statement supports clinicians caring for children and adolescents across the care spectrum in three ways: 1) By helping them to identify, engage, and prepare patients (and families) for mental health assessment and treatment (while shifting away from medically unnecessary diagnostic testing and procedures); 2) By promoting a functional, rehabilitative approach, including early return to school and activities; and 3) By offering strategies to monitor and manage physical and mental health symptom evolution.
For clinicians, making and conveying a diagnosis of an SSRD can be difficult. The focus here is to address issues early in the diagnostic odyssey, when young patients have not yet or are just beginning to understand how emotions and stress are contributing to their physical symptoms. Long-term psychotherapeutic management strategies are beyond scope of this document but should be part of treatment planning.
Somatization describes the experience whereby emotions, either positive (e.g., excitement) or negative (e.g., worry), and thoughts are expressed as physical signs or symptoms. Somatization is a normal and involuntary physical response to an emotional stimulus or stressor that all people experience[4]. For example, signs of somatization may include axillary sweating when nervous, pupillary dilatation when fearful, or syncope when surprised. Symptoms of somatization can include abdominal pain when feeling anxious, or fatigue when feeling overwhelmed. Somatization is considered part of a disorder when these bodily signs or symptoms cause significant distress or impairment in daily life. Such signs and symptoms of an SSRD may occur as an isolated disorder but may also co-occur alongside another medical condition[4].
According to the DSM-5 -TR[4], SSRDs comprise a cluster of five specific disorders that include: 1) somatic symptom disorder, 2) functional neurological symptom disorder (FNSD or conversion disorder), 3) illness anxiety disorder, 4) psychological factors affecting other medical conditions, and 5) factitious disorder. See Table 1 for inclusion criteria and a brief description of specific disorders. The focus of this statement is on somatic symptom disorder and FNSD because they are the two SSRD types that present most commonly to general paediatric clinicians.
Table 1. Types of somatic symptom and related disorders |
|||
Disorder name |
Other common or historic terms |
Key features |
Behaviours, symptoms, or diagnoses young patients may present with |
Somatic symptom disorder (DSM-5-TR) |
“Functional” “Medically unexplained symptoms” (term has fallen out of favour) “Non-organic” Bodily distress disorder (ICD-11) Somatoform disorders (ICD-10) |
One or more somatic symptoms that are distressing or significantly disrupt daily life. Excessive thoughts, feelings, or behaviours related to somatic symptoms, manifested as one or more of the following:
|
Chronic headaches Dizziness Brain fog Chronic nausea Chronic pain Fatigue |
Functional neurological symptom disorder (DSM-5-TR) |
Conversion disorder Functional neurological disorder Dissociative neurological symptom disorder (ICD-11) Dissociative disorders (ICD-10) |
One or more symptoms of altered voluntary motor or sensory function without evidence of a neurological diagnosis (e.g., normal EEG during a seizure-like episode) [5][6]. The symptom(s) cause clinically significant distress or impairment in social, occupational, or other important areas of functioning. |
Psychogenic non-epileptiform seizures (previously called pseudoseizures) Paralysis or weakness |
Illness anxiety disorder |
Hypochondriasis |
Preoccupation with having or acquiring a serious illness. High anxiety about health status, resulting in excessive health-related behaviours or maladaptive avoidance. |
Excessive care-seeking behaviours surrounding actual or imagined illness |
Psychological factors affecting other medical conditions |
Clinically significant psychological or behavioural factors that adversely affect an individual’s medical condition and increase their risk for suffering, death, or disability. |
Poor or non-adherence to prescribed medications or treatments Ignoring symptoms Anxiety or stress exacerbating asthma or migraine symptoms |
|
Factitious disorder Factitious disorder imposed on another person |
Munchausen’s disorder Munchausen by proxy
|
Purposeful falsification of symptoms or induction of injury, with intent to deceive. By contrast with the previous four disorders, factitious disorder is thought to be under the patient’s control. |
DSM-5-TR Diagnostic and Statistical Manual of Mental Disorders, 5th edition, text revision; ICD International Classification of Diseases
Exact prevalence estimates of SSRDs are uncertain due to the non-specific nature of symptoms and the universal experience of somatization that does not cross the ‘disorder’ threshold. Published estimates from European studies range from 4.1% to 12.6% of children and adolescents who at some point meet criteria for diagnosis[7]-[9]. In Ontario, over 33,000 children, youth, and young adults (up to 24 years old) were identified in health records to have SSRDs over a 7-year period[10]. Population-level data from other Canadian provinces were not yet published at time of writing. Individuals with SSRDs have high health system utilization rates (and related costs), school absenteeism, high rates of disability, and variable prognoses[10]-[13]. For children and youth hospitalized with an SSRD, mean health system costs were a combined $52,621 CAD in the year before and after diagnosis, on a par with some of the most medically complex children[14]. Importantly, after receiving an SSRD diagnosis, only 40% of patients will see a physician within the next year for a mental health concern[10].
Children and adolescents with SSRDs present with non-specific signs and symptoms across the spectrum of general paediatrics (e.g., brain fog, fatigue, dizziness, joint pain, abdominal pain, hypermobility) and subspecialty paediatric areas (e.g., seizures and sensory changes (neurology), nausea and dysphagia (gastroenterology), orthostatic intolerance (cardiology), joint pain (rheumatology), and anorexia or pelvic pain (adolescent medicine)). Patients may also present with questions about or self-diagnoses of disorders that have similar common symptoms and multi-systemic presentations[15]-[17], including: 1) postural orthostatic tachycardia, 2) post-COVID-19 condition, 3) chronic Lyme disease, and 4) Ehlers-Danlos syndrome. Because these conditions are commonly asked about, clinicians will benefit from an understanding of diagnostic criteria and management pathways for these four conditions[18]-[21]. Such knowledge enables a more individualized assessment of, and approach to, patient concerns regarding these diseases, and can help guide further testing and referral, when appropriate.
Clinicians often serve as ‘gatekeepers’ for diagnostic testing and evaluation. In the context of multiple and non-specific symptoms, clinicians and patients may worry about missing important or obvious physical health conditions. Clinicians must consider how to use testing judiciously and the urgency with which to investigate symptoms. A decision to investigate further requires significant clinical judgement and can be guided by pattern recognition. The extent of testing should also be based on potential benefits (i.e., likelihood of finding a physical health diagnosis, family reassurance) versus the risks of invasive procedures (e.g., sedation for magnetic resonance imaging (MRI) or endoscopy), cost to families or the health care system, or a discovery of incidental findings. Regardless of the extent of testing, it is important when pursuing diagnostic investigations to frame the clinical impression and process for patients and families using a holistic bio-psycho-social[22][23] approach rather than a biomedical lens alone. A holistic approach considers the dual role of physical and mental health conditions that may be contributing to ultimate diagnoses[22][24]. Table 2 [21][25]-[33] outlines common tests to be considered when faced with non-specific symptoms that suggest an SSRD and when these symptoms overlap with other important diagnostic indications.
Table 2. Common testing considerations for SSRDs |
|
Symptom |
Testing |
Orthostatic intolerance |
Orthostatic vital signs, consider 10-minute stand test when feasible[25], Beighton’s score[26][27], CBC[21], cortisol[21], electrolytes |
Seizure-like episodes |
EEG |
Flushing/urticaria |
Diagnostic/therapeutic trial of antihistamine, consider serum tryptase for mast cell activation syndrome[28][29] |
Chronic fatigue/brain fog |
CBC, cortisol, electrolytes, ALT, EBV serology, Cr, TSH, CRP/ESR, ferritin, B12, HbA1C |
Dysphagia |
If progressive, consider upper GI contrast study +/− upper endoscopy |
Headaches |
None, unless red flags or abnormal neurological examination[30-32] |
Recurrent abdominal pain |
ALT, albumin, CBC, CRP/ESR, celiac screen, ferritin, urinalysis, abdominal ultrasound[33] |
ALT, alanine aminotransferase; CBC, complete blood count; CRP/ESR, C-reactive protein/erythrocyte sedimentation rate; Cr, creatine; EBV, Epstein-Barr virus; EEG, electroencephalography; GI, gastrointestinal; TSH, thyroid stimulating hormone
Much has been written about how to approach families regarding mental health following diagnosis of an SSRD, including sample scripts[34][35]. There is far less clinical guidance on approach at earlier phases of disease, before the concept of mind-body connection has been introduced or fully understood, or when diagnostic testing is at an early stage[36].
The approach to a child or adolescent with an SSRD—and their families—depends on the following variables: 1) Where they are in the diagnostic journey; 2) How well their physical health symptoms have been addressed; 3) How ‘in-tune’ they are to the mind-body connection and their openness to discussing the role of stressors; and 4) How ready they are to engage in discussions about mental health. Basic guidance for early encounters follows here:
Explain the mind-body connection and normalize somatization. Offer descriptions of the physiology of stress, the role of neurotransmitters (e.g., serotonin receptors in both the brain and the gut), and for FNSD, describe the different brain regions involved (i.e., amygdala, prefrontal cortex, motor cortex). Emphasize that symptoms may be understood as a problem with ‘software’ rather than ‘hardware’[41]. Sample scripts that clinicians can use for psychoeducation are available[34][39]. While counselling takes time, it is a critical step toward reducing diagnostic confusion, understanding symptoms, and facilitating diagnosis and timely treatment[39].
Many children or adolescents with an SSRD have co-occurring psychiatric disorders with or without overlapping symptoms, such as anxiety, depression, or an eating disorder[42]. Such conditions should be treated concurrently, as per usual guidelines[43], with the most impairing psychiatric disorder prioritized.
Some families report that their child will return to activities only when symptoms resolve. However, helping families to shift toward a rehabilitation model, where they take part in activities even when symptoms are present, is preferable. Rehabilitation may include occupational therapy (OT), physiotherapy, or speech-language pathology. The role of rehabilitation for treating SSRDs lacks high quality, evidence-based studies[44][45], but the chronic pain literature [46][47] makes it clear that a multi-modal approach, including rehabilitation services, supports recovery. OT can help with engagement at school and academic accommodations. A physiotherapist can improve mobility by avoiding the initiation of, or reducing ongoing need for, aids such as a walker or wheelchair, which can be difficult to discontinue once they are in place. Physiotherapy can also assist with guiding tolerable activities and prevent deconditioning.
When clinicians encounter a family that is not yet ready to consider the mind-body connection as part of their child’s condition despite significant functional limitations, both parties can feel ‘stuck’. Physiotherapy and OT provide windows of opportunity to introduce a functional, rehabilitative pathway forward. Reassure families that focusing on rehabilitation does not preclude further testing or diagnosis, but rather is intended to support their child and prevent decline.
Maintenance of or early return to function should be supported in parallel with ongoing investigation, psychoeducation, medication, or other therapy. School avoidance is common with SSRDs, and accommodations to encourage attendance can be beneficial[7][13]. Engaging with the school for a meeting or by letter (or both), or with an OT for specific accommodations, can facilitate earlier return to normal school activities. Personal education plans are defined by patient need and school resources, but common accommodations include making a quiet room available, allowing noise-cancelling headphones to reduce stimulation, modifying course load with paced return to academic and social expectations, and inviting seated presentations for students with orthostatic intolerance. For patients whose symptoms may be visibly distressing to others (e.g., psychogenic non-epileptiform seizures), provide a letter describing a typical event, how to support the student during an episode, and when school providers might consider calling emergency medical services.
The most widely available psychotherapeutic modality for children and adolescents with SSRDs is cognitive behaviour therapy[48][49]. There is also emerging evidence for acceptance and commitment therapy, psychodynamic therapy, and emotion-focused family therapy for treating SSRDs[48][50]. Caregiver coaching includes teaching validation techniques, supporting coping strategies and symptom management, and focusing on individual strengths and abilities despite symptoms.
Common barriers to patient or family acceptance of an SSRD diagnosis and treatment include devaluing the symptoms experienced, diagnostic uncertainty, and inadequate explanations for symptom presentation. Strategies to support this diagnosis, symptom management, and the patient and family involved include the following.
This position statement was reviewed by the Acute Care, Adolescent Health, and Community Paediatrics Committees of the Canadian Paediatric Society. It has also been reviewed and endorsed by the Canadian Academy of Child and Adolescent Psychiatry.
Members: Anne Kawamura MD (Chair), Johanne Harvey MD (Board Representative), Natasha Saunders MD, Megan Thomas MBCHB, Scott McLeod MD, Ripudaman Minhas MD, Alexandra Nieuwesteeg MD (Resident Member)
Liaisons: Olivia MacLeod MD (Canadian Academy of Child and Adolescent Psychiatry), Angela Orsino MD (CPS Developmental Paediatrics Section), Leigh Wincott MD (CPS Mental Health Section)
Author(s): Natasha Ruth Saunders MD MSc, Anne Kawamura MD, Olivia MacLeod MD, Alexandra Nieuwesteeg MD, Claire De Souza MD
Funding
This position statement received no direct funding but was supported by the Canadian Paediatric Society.
Potential Conflict of Interest
Dr. Saunders reported receiving personal fees from the BMJ Group, Archives of Disease in Childhood and an honorarium from the Canadian Guidelines for Post Covid-19 Condition Guideline Team outside the submitted work. No other disclosures were reported.
Disclaimer: The recommendations in this position statement do not indicate an exclusive course of treatment or procedure to be followed. Variations, taking into account individual circumstances, may be appropriate. Internet addresses are current at time of publication.