Conversion Disorder and pediatric chronic pain– talking through the challenges
Jenny Evans, Ethan Benore, and Gerard Banez
There is increasing interest in Conversion Disorder in pediatric chronic pain and while there is much to say on this topic, there is little previous research, and no consensus exists regarding best treatment practices. Our aim is to call attention to several key communication challenges and demonstrate the need for more research on this important topic. This commentary offers suggestions on working through these challenges, integrating existing research and clinical experience. A case example is provided at the conclusion.
In our clinical experience, youth presenting with chronic pain and/or Conversion Disorder (also known as Functional Neurologic Disorder) symptoms often experience a lengthy and complicated diagnostic process. Often, this protracted diagnostic process yields an emphasis on medical explanations and interventions for symptoms (referred to as medicalization), which delays treatment and complicates engagement in a self-management approach to their symptoms. The DSM-5 distinguishes between pain and conversion disorders (American Psychiatric Association, 2013); however, there is increasing discussion that the two are not necessarily mutually-exclusive, and youth with comorbid chronic pain and conversion symptoms may experience even greater delays and medicalization than those with either alone. Recent research suggests that conversion symptoms in youth can be triggered by relatively routine stressors (de Gusmão et al., 2014), and given the high level of stress experienced by youth and families with chronic pain (Hunfeld, et al., 2001), it is possible that youth with chronic pain could be at increased risk of developing conversion symptoms as a result of their pain condition. However, the prevalence of conversion symptoms in pediatric chronic pain populations is not known and there is a clear need for more research regarding symptom comorbidity.
Enhancing treatment engagement – the need to demedicalize without delegitimizing. Youth presenting with pain and conversion symptoms have often experienced a long and frustrating trail of diagnostic procedures and specialty referrals, as well as a baffling amount and variety of feedback regarding what was and was not found. Often the most specific feedback patients are given is that their symptoms are medically unexplained. While the goal of using this terminology may be demedicalization, many patients have told us they interpret this as: (1) being told “it’s all in your head,” or (2) the symptoms are very unique or severe, and thus very difficult to treat. In our experience, lack of an adequate diagnosis increases diagnosis-searching, delegitimizes a patient’s struggle, and increases reluctance to engage in well-validated cognitive-behavioral and rehabilitative approaches to improving function (which may be deemed by patients as giving up on finding a cure). Families we work with who are still seeking medical resolution typically struggle to recognize a psychological component to apparently physiological symptoms, resulting in unique challenges in forming an effective therapeutic alliance.
Talking with families about the conversion label. Providers, in turn, can be uniquely hesitant to apply the Conversion Disorder label due to fear of alienating the families. Not fully discussing a somatic disorder may limit a patient and family’s ability to fully engage and participate in the appropriate treatment (Cole et al., 2014). Research suggests that parent reactions are affected by the diagnosis given and, in the case of a non-organic diagnosis such as Conversion Disorder, using a biopsychosocial framework may reduce parental distress (Williams et al., 2009). This framework can help families understand how the mind and body work together, and that experiences such as chronic pain typically involve contributions from both the body and the brain. Anecdotally, this framework may be especially important when discussing psychological interventions for physiological symptoms. Failing to do so can unintentionally delegitimize the symptoms, communicating: “It’s all your head.” Previous research suggests using clear, non-pathologizing language (Morgan et al., 2013) and emphasizing the realness of the symptoms (independent of their etiology). Legitimizing the body’s response to stress (Silber, 2011) can be helpful in understanding and accepting somatic diagnoses. However, to date no empirical investigations have been published on strategies to provide feedback regarding conversion symptoms, and more research is clearly needed to provide direction in this area.
Guidelines for effective interprofessional communication
Consistency, consistency, consistency. Patients with pain and conversion symptoms often present with an array of symptoms that fluctuate in severity and type throughout treatment. If teams are not in agreement on the best approach to framing and treating symptoms, interventions will be inconsistently implemented, potentially causing intermittent reinforcement of the symptoms and behaviors that impair functioning. When suggesting that a Conversion Disorder accounts for some of a youth’s symptoms, it is very valuable to have physicians involved in the child’s care present for discussions of this diagnosis and related treatment recommendations. Otherwise, families may be inclined to dismiss the psychological interpretation and continue to search for medical answers. In the treatment context, maintaining team cohesion can be especially challenging since treatment of pediatric chronic pain is typically provided in a multi- or interdisciplinary format, and additional strategies may be needed including: (a) routine sharing of progress notes, (b) cross-specialty, collaborative treatment planning, (c) scheduled conference calls, and (d) an identified point person to reduce the potential for confusion and/or splitting among providers. Even within a unified team, use of information sharing strategies such as written protocols and patient memory books may prove essential, along with frequent communication and careful monitoring of the team’s progress in following its own plan.
Team functioning. Although case studies have been published on conversion symptoms in medically complex youth (Gooch et al., 1997; Campo & Negrini, 2000), no research has examined best strategies to enhance team functioning and communication in this area. More research is urgently needed. The variable course and progression of symptoms and symptom-related impairment that characterize conversion can be particularly challenging. For example, physical and occupational therapists providing direct services may be at increased risk of frustration or burnout when spending 3+ hours a day with a patient who fails to improve as expected based on their primary pain condition. As frustration increases, team members may begin to see confronting the patient as the most direct and effective way to resolve the difficulty. In these circumstances, attention to team communication and support will be important. Strategies may include: (a) reassurance that variability in progress and functioning is expected, (b) support and encouragement on managing setbacks or relapses, (c) education and working with providers to enhance their communication with the patient and family through role play or scripts, and (d) team support to prevent and address issues related to caregiver fatigue.
There is increasing recognition of the importance of addressing comorbid conversion symptoms in youth with chronic pain, a topic that has historically been somewhat avoided. One potential reason for the failure to discuss conversion symptoms relates to communication challenges surrounding the diagnosis and lack of research on best practices for intervention. In this commentary we have sought to draw attention to these issues and demonstrate the need for more research on strategies to address them. As is clear, much more work is needed to understand key aspects of conversion symptoms in youth with chronic pain including prevalence rates as well as best practices for diagnosis, treatment, and communication about the diagnosis with patients and families.
Cite as: Evans JR, Benore E, Banez G. Conversion Disorder and pediatric chronic pain – talking through the challenges Pediatric Pain Letter 2015;17(2):16-20. www.childpain.org/ppl
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