Communication Tips

As with any patient/provider discussion, no absolute dos and don’ts of communication work for every interaction. Below are some best practices for discussing SSRDs, but they are not intended to be prescriptive or exhaustive. Providers should exercise discretion and judgment to decide what will most help them educate their patients/families.

History	After obtaining a symptom history from the child, consider meeting with caregivers separately. Families may be able to share details privately if they do not feel comfortable sharing in front of their child.
Acknowledge Symptoms as Real and Serious	Summarize symptoms and their impact on child’s life. Summarize/read back how function (at home, school, with friends, at activities) is impacted by symptoms.
Name the Diagnosis	Somatic – body/physical. Symptoms – signs/signals our body uses to alert us to potential problems. Disorder – means that the symptoms are causing problems in your life. "Somatic symptoms and related disorders (SSRDs) occur when there are problems with the body’s communication system. Children with this condition have physical symptoms that can be upsetting but are not harmful. Symptoms may look like other illnesses, but tests and lab results may not find a cause. These symptoms are called "somatic symptoms." Somatic symptoms are real; they are not imagined."
SSRDs as a Problem with the Mind — Body Connection	"When the mind and body work together correctly, they continually send messages back and forth. These messages interpret what we feel and tell us how to react. The messages are sent through a complex pathway that includes the brain, spinal cord and nerves. When a child has an SSRD, the messages between the mind and body can be too strong, too weak or sent on the wrong path. Everyone has experienced somatic symptoms from time to time. Examples include feeling butterflies in the stomach or muscles tightening with anger. Most of the time, these symptoms are harmless and pass on their own. For children with somatic symptoms and related disorders, these may interfere with daily life. Children may miss school or stop participating in activities they once enjoyed." Helpful metaphors: The Smoke Detector The Volume Button It may be helpful to share that researchers have demonstrated fundamental changes in brain pathways and even structural changes in the brains of people with somatic symptoms using special MRI images.
Role of Triggers and Risk Factors	We used to think that SSRDs were all due to emotions being expressed physically. Historically, physicians drew a causal link between stressors and SSRDs, leading to intense searches for an identifiable trigger at onset of symptoms like an injury, medical, biological or social stressor. Our current understanding is that physical and emotional feelings may influence the development of SSRDs, but are not required to diagnose SSRDs. "SSRDs are often triggered by physical stress, like an injury, illness, or psychological stress. Although somatic disorders can be related to stress, this does not mean the child is faking or having symptoms on purpose. Other factors like age, genetics, or hormones may also play a role. It is often a combination of these risk factors that lead to SSRDs. However, sometimes a clear reason is unknown, and somatic symptoms cannot be connected to a particular cause."
Develop Rapport	Allow the child to tell their story. After the child has shared their symptom story, discuss the importance of shifting focus away from history/symptoms toward setting manageable goals for improved function. In this way, the provider can walk with the child on the two paths of the symptom/medical focus toward function/recovery.
SSRDS can be diagnosed like any other medical condition. SSRDs are not diagnoses of exclusion.	Diagnosis begins by listening carefully to the child’s physical and emotional history to understand how somatic symptoms impact daily activities. It also includes a medical exam and a careful review of medical testing. SSRDs are not diagnosed as a last resort by "ruling out" all other illnesses. A provider with experience in this area can identify a somatic symptom disorder by looking for specific patterns and characteristics. Do: Focus on positive diagnostic findings. Share the features of the child’s history and exam leading you to this diagnosis. Show the child their symptoms. Don't: Avoid focusing on what the diagnosis is not. Avoid an extensive discussion of completed negative medical workup, which might sound like, "Great news, all of your tests are negative and you don't have X, Y, Z problems." Avoid using terms like "non-organic," "not real," or "all in your head." These are not helpful and make children and caregivers feel unheard. Don’t attribute all SSRDs to unconscious expressions of stress or trauma.
Why To Treat SSRDs	SSRDs symptoms are real and distressing to children and their caregivers. SSRD symptoms are treatable! The sooner we treat SSRDs, the better the child’s prognosis.
How Do We Treat SSRDs	Repair the mind/body connection by retraining the brain (through psychological therapies) and the body (through physical therapies and a return to typical activities). Encourage typical functioning through symptoms and facing symptom triggers instead of avoiding them, which repairs the mind-body connections. Cognitive behavioral therapy is the psychological therapy that tends to work best for SSRDs. CBT focuses on improving the connections between feelings (emotional and physical), thoughts, and behaviors. Symptom-focused medications do not tend to improve somatic symptoms. Sometimes a short course of supportive medications may be helpful for certain SSRDs. If a medication is not helping, it should be weaned off safely.
What to Expect from SSRD Treatment	Function (the ability to do typical tasks and activities) tends to improve before symptoms get better. Symptoms should improve over time as the mind-body connection starts to repair.
Discuss the Goals for an SSRD-focused Admission, Including the Reason for Admission and Expectations for Medical Workup	Clarify why the child is being admitted: "Your child is being admitted to the General Pediatrics team for painful or debilitating symptoms which have limited their function." It can be helpful to review how function has been affected or limited by symptoms, considering function in the spheres of home, school, and social/community/leisure." Name your concern for SSRDs and clearly share these concerns with children and caregivers: "These symptoms are suspicious for somatization, where the body responds to stressful triggers such as illness, life events, or injury with physical symptoms that are distressing but not dangerous." Set expectations for medical workup and testing: "A team with expertise in somatic symptoms (including a pediatrician, behavioral health providers, and other specialists) will thoroughly review your case to decide if further tests or consultations are required. Test results are most often normal in SSRDs. We want to think carefully before ordering unnecessary and invasive testing that may cause further stress and delay the time to appropriate treatment." Introduce SSRD-focused treatment plan: "Our team will help connect your child with tools and strategies to manage these symptoms and reduce their intensity, as well as identify providers that will help follow up once your child leaves the hospital, all to help your child return to normal function."
Discussing Diagnostic Uncertainty	Occasionally, there may be diagnostic uncertainty coexisting with clear somatic symptoms. It is important to remember that: Risk of misdiagnosis is quite low and Somatic and medical symptoms may coexist and be managed simultaneously. Discuss/reinforce the importance of "Walking two paths," pursuing directed medical diagnostic work-up while also beginning to learn strategies to manage somatic symptoms and promote return to function.
Medication Management	Medications do not typically tend to improve somatic symptoms, which may result in providers adding more and more medications to address symptoms, most commonly when children are working with multiple medical specialties to address different somatic symptoms. When you encounter polypharmacy in a child with SSRDs, it may be helpful to ask whether the child is getting symptom relief from prescribed medications and introduce the concept of weaning. Explain to families that symptom-focused medications are less likely to be successful in repairing the mind-body connection than SSRD therapies. Many medications used by children with SSRDs cannot be stopped "cold turkey," so work with pharmacy to create a weaning plan. Families often feel more comfortable weaning medications in a medical setting where their child can be observed and monitored.
SSRD Treatment Plan	Improved function is best achieved through physical and psychological therapies (CBT having the best evidence for SSRD treatment) focusing on setting goals and using strategies and tools to work through symptoms. "SSRD treatment aims to break the symptom cycle and repair the mind-body connection. The result is to get you back to your life, with improved functioning at home with your family, in school, hanging out with friends, and doing all the things you like to do (sports, hobbies, etc.)." "Treatment will focus on setting goals in small, achievable steps for getting back to functioning typically, which will likely include a combination of psychological and physical therapies to help your mind and body communicate better. Your treatment team will teach you tools and strategies for coping with symptoms as they arise."
Recovery as a Process	Recovery is a process: "SSRDS are treatable, though repairing communication pathways may take time and practice. Treatment can be very effective in improving your function and getting relief from symptoms." Function improves before symptoms: "Function, or the ability to do things you need and want to do, tends to improve before symptoms, which how the mind-body repair works. It is important to work with your treatment team on a plan for managing symptoms with tools and strategies during the recovery process."
Prognosis	Recovery is possible. Most children will see improvement or resolution of their symptoms with proper treatment. Research shows that when treatment is not delayed, children recover more quickly and have better outcomes. Symptom course and managing relapses: In the recovery process, relapses are possible, and some children develop new symptoms as others improve, especially during times of increased stress, such as life changes or illness. If new symptoms arise, they tend to respond well to the SSRD treatment approach.

Examples

The Smoke Detector

Goal: Explain the pathophysiology of somatic symptoms.

Scripting: "We all have smoke detectors in our house. The goal of a smoke detector is to alert inhabitants to potential fires. However, smoke detectors don’t detect fires; they detect smoke, which means that sometimes, smoke detectors alarm when there is smoke but no fire (homemade pizza night anyone?) and in some cases, the fire alarm is so sensitive it might even fire without much smoke at all, though it will be loud and intrusive all the same. While this alarm should be paid attention to, it can safely be turned off if it is not firing appropriately. Our body’s pain system has a similar function to a smoke detector. It is meant to alert us to the presence of danger or illness, but it does not directly detect illness, and much like a smoke detector on pizza night, it can fire even when there is no medical danger. And much like a smoke alarm that fires inappropriately, it can become extremely disruptive and bothersome to our lives. To make the body’s fire alarm stop firing, we need to update its software through intensive retraining with physical and occupational therapy and cognitive behavioral therapy."

The Volume Button

Goal: Explain perception of painful symptoms in SSRDs.

Scripting: "Pain can function in our body like a giant volume button. Some people’s volume buttons are quiet, while others are very loud. Nerves and nervous connections control how loud the volume button is. For children with pain as the main symptom of their SSRDs, their nerves are firing harder and faster than the average person’s nerves in response to certain stimuli, which is why they experience their symptoms much more vividly. This does not mean their symptoms are not real, simply that their symptom volume button is turned up very loud. And once the volume button is turned up, symptoms can become quite stressful and scary, which turns the volume button even higher. The good news is that there are ways to help turn that volume button down through exercises focusing on mindfulness and anxiety management."