Working with Children and Adolescents with Medically Unexplained Physical Symptoms (MUPS)

1. Working with Children and Adolescents with Medically Unexplained Physical Symptoms (MUPS) Dedee Caplin, PhD, Associate Professor, Pediatrics University of Utah School of Medicine Primary Children’s Hospital

2. Disclosure Statement • I have no relationships or conflicts to disclose.

3. Session Objectives • Understand what MUPS are and how they present at school. • Identify the multifactorial components and triggers to MUPS in the school environment. • Provide a model for effectively communicating/ educating about MUPS to teachers, students and families. • Identify ways to effectively collaborate with medical/mental health providers to manage kids with MUPS at school

4. What are MUPS? • Medically Unexplained Physical Symptoms (MUPS) are clinical presentations where symptoms or impairment cannot be fully explained by a known organic pathology or medical evidence • Conversion disorder (syncope, gait disturbance, etc.) • Undifferentiated somatoform disorders • Chronic pain syndromes, • IBS and chronic abdominal pain • Pseudoseizure • Chronic or daily headache • Chronic fatigue

5. Does this sound familiar? • 10th grade student is experiencing daily headache, dizziness, fatigue, and difficulty concentrating following a possible mild concussion • She is worried about not being liked and being “picked on” by peers and teachers, especially because of her current limitations • She is experiencing declining grades and struggles with attendance missing at least 3 days per week • When you meet her, she appears healthier than her description, despite rating her pain at a 10/10 most of the time

6. What is your role in her care? • The family has heard about some kind of Medical 504 thing that will allow their to not have to make up missed work • The family would prefer that she be placed on home and hospital because she is not capable of going to school • The medical team is calling you arguing that she NEEDS to be in school

7. Who are these kids? In clinic • Children with MUPS present frequently in the hospital, to numerous subspecialty clinics and to their PCP. • From a medical perspective they are time intensive, demanding, and difficult to assess and treat. • Families tend to deny any psychological factors, are wary of psychiatric services and as a result are difficult to engagebut evidence suggests that behavioral health is the optimal place for care. • They are often upset with the medical team for failing to find an explanation for the symptoms and feel misunderstood. • They often direct treatment with parental anxiety and pressure to “do something”.

8. Who are these kids? In school • They miss a lot of school and often call to be picked up when at school • They are chronically behind in credits and coursework • They struggle to interact effectively with teachers • They struggle to engage or keep up with peers • They are time intensive, demanding, and difficult to work with • They are often upset with school personnel and report feeling misunderstood often

9. Schools have a part in reinforcing illness patterns • Giving in to pressure from families to “run the show” • Passes to nurses’ office • Calls home • Excused absences • Taking the path of least resistance • Homebound/homeschool • Gifted grades • Online courses, packets

10. Communication Content: Things to remember • MUPS are not simple psychiatric illnesses, but rather a complex array of likely contributing factors to the physical symptoms • It is clinically useless to state a cause and effect link between emotional and physical symptoms. • MUPS can arise without concurrent depression or anxiety (psychiatric symptoms associated with MUPS may be the RESULT of symptoms, rather than the cause)

13. Communication: Introducing MUPS and Treatment • Many things can trigger a single symptom but the body has a limited number of ways to respond to triggers. • MUPS are created and maintained by numerous internal and external factors and require combined medical, behavioral, and psychosocial elements in evaluation and treatment. • The connection between brain and body means that anything mediated through the central nervous system can realistically “cause” symptoms to occur.

15. MUPS Management Goals: Clinical • To teach kids that their pain or other symptoms may not completely be eliminated, but that they can be functional in all aspects of daily life. • To maximize efforts at increasing self-control of symptoms and tolerance for discomfort with the mantra: Retrain the Brain. • To treat each child is an individual and needs different skills to reintegrate into their environment. • Communication with family, school, and community health providers is the key to a successful treatment plan

16. MUPS Management Goals: Families • Careful engagement with the family’s concerns and beliefs are crucial. • Family work involving cognitive behavioral techniques aimed at reducing concern about the child’s symptoms • Families often need to be taught gradual reduction of attention to symptoms • Families often need to be reassured that a paced increase in children’s activities is most helpful

17. MUPS Management Goals: School • Functional Outcome: Attendance first, performance later • Support personnel on campus • To provide support to student when struggling • To prevent calls to home • Reintegration plan • Begin with something achievable like partial days/rest breaks, educed academic demands • Create a formal system of accountability for the school and the family (may be a 504 plan, etc.) • Consistency • Provide regular monitoring and feedback to plan

18. Questions and discussion • How can we best work together? • What do you need to successfully work with these kids in your setting? • How can you get a child appropriate care in and out of school?

19. Things you can do • Communicate understanding, empathy, and a desire to help to families • Provide families with explanations and give them “handout” to take back to their medical provider • Encourage families to explore care in all areas, rather than just medical • Encourage communication with teachers and those working with MUPS at school

20. Referrals for Behavioral Health Care • Pediatric Behavioral Health Clinic • Primary Children’s Hospital • Central Intake • 801-313-7711