The presenters disclose the absence of personal, financial or commercial conflicts of interest relative to the content of this educational activity within the past 12 months. The presenters disclose the absence of personal, financial or commercial conflicts of interest relative to the content of this educational activity within the past 12 months. Peter Muller is a associated with the following: HopeNET (No More Essential Tremor) Executive Director, its Board and Medical Advisory Board Claudia Testa, MD, PhD, is associated with the following: Director, Huntington Disease Program, VCU / MCV Parkinson’s and Movement Disorders Center; VP, Tremor Research Group; Medical Advisory Boards of International Essential Tremor Foundation (IETF) and HopeNET; Founder, North American Essential Tremor Consortium; Movement Disorders Society Task Force on Tremor
Deborah Zeller is associated with the following: HopeNET Medical Advisory Board; Virginia Council for Private Education; NASN; VASN; ANA; IETF
1. Identify at least four factors that make essential tremor (ET) relevant to the care of the school-aged population 1. Identify at least four factors that make essential tremor (ET) relevant to the care of the school-aged population 2. Describe at least two aspects of both the phenomenology and medical management of ET in school-aged children 3. Identify at least five school nursing strategies to support students diagnosed with ET 4. State at least three potential advocacy strategies to enhance student/family support within the community
How are individuals with essential tremor (ET) affected by this movement disorder? How are individuals with essential tremor (ET) affected by this movement disorder? - “Essential Tremor is More Than a Tremor” (IETF, 2013)
- Stories from six people who live the challenges of ET
- Typical motor movements associated with ET
- Free DVD copies available at end of session
Clinical syndrome that affects about 2.2% of the U.S. population (Louis & Ottman, 2014) Clinical syndrome that affects about 2.2% of the U.S. population (Louis & Ottman, 2014) Limited awareness of ET as a national public health issue Care needs r/t ET are not being addressed in at least one third of ET patients that were recently surveyed (Louis, Rohl & Rice, 2015) Limited funding for ET research, education & healthcare Change in ET care depends upon strong vision, leadership & advocacy
Bridge knowledge gaps about ET across the lifespan Bridge knowledge gaps about ET across the lifespan Increase public awareness among partners, stakeholders & supporters Enhance relationships toward a common purpose, process & expected outcomes for ET answers Educate those with ET about health-related quality of life options Advocate for changes in policies & practices for the greater good Leverage electronic health information systems to influence policy, funding & strategies that promote health for those with ET
You are trusted professionals serving on the front lines of healthcare delivery You are trusted professionals serving on the front lines of healthcare delivery - Are typically the only healthcare professional in the school
- Have care coordination, communication & collaboration competencies
- Practice in the physical, cognitive, affective & behavioral domains
- Serve as health educators and advocates
- Have strong healthcare provider & community connections
Mean onset age for childhood ET is 6 to 16 (Ferrara & Jankovic, 2009) & it peaks in puberty with a variable progression Mean onset age for childhood ET is 6 to 16 (Ferrara & Jankovic, 2009) & it peaks in puberty with a variable progression Between 5 to 15% of ET cases occur during childhood (Raya, 2010) & one study found that 5.3 % of ET cases were diagnosed prior to age 20 (Louis & Ottman, 2014) In a cohort of 317 students, 2.2% were found to have mild-to-moderate hand tremor (Louis, Garcia & Rauh, 2015) Another study found that 50% of adults diagnosed with ET reported childhood onset of tremor (Keller & Dure, 2009) Tremor severity may range from mild to disabling
Multiple challenges may be experienced in school Multiple challenges may be experienced in school Tremor may worsen with stress, caffeine, fatigue & exercise Social handicaps may occur in up to 25% of young people with ET by age 20 (Bain, 2015) Functional disability, as well as impaired QOL, can result (Chandran, 2012; Elble, 2013) with up to 55% of young people diagnosed with ET reporting some functional limitation (Bain, 2015) Chronic & often progressive condition that has a lifelong impact on at least 7 million Americans (Louis & Ottman, 2014)
Define tremor, investigate causes of ET & review treatment options, including: Define tremor, investigate causes of ET & review treatment options, including: Range of symptoms and differential diagnosis Treatment approaches in the now and future paths What drives choosing the treatment approach Medication and non-medication approaches to tremor Non-tremor issues and treatment approaches
Diagnosis and treatment Diagnosis and treatment Effective treatments differ – finding the right one(s) for each person is key Making progress! Research and developing new treatments hinge upon how tremors are defined
Collaborative efforts using new ET definitions and new technologies will change the field Collaborative efforts using new ET definitions and new technologies will change the field - Exome sequencing, whole genome sequencing
- New genetic network analysis
- Combining genetic data with other complex data sets
ET is an involuntary oscillatory movement of some body areas: ET is an involuntary oscillatory movement of some body areas: - Kinetic tremor = action tremor, often also postural
- Involuntary, not under direct conscious control
- Visible bilateral, rhythmic & persistent tremor
- Back and forth, not stuck in one posture
- External tremor is not suppressible
In lay terms: Nervous, shaky
Primary Inclusion Features: - Primary Inclusion Features:
- Kinetic tremor affecting both hands &/or arms, and/or other body regions during effort, not at rest or during sleep (Rana, 2010)
- Some variants of ET & absence of other neurological signs
- Secondary Inclusion Features:
- Long duration
- Family history of essential tremor
- Ethanol intake temporarily decreases tremor amplitude in adults & is a common response, but is not diagnostic
Are there non-tremor symptoms in ET? Are there non-tremor symptoms in ET? - Cerebellar signs (mild) - balance changes
- Behavioral/psychiatric – anxiety, depression, harm avoidance
- Dystonia in areas unaffected by tremor?
- Cognitive changes? – Controversial & relevant to older adult
Are there Parkinsonian features? - Mild changes in tone with cogwheel rigidity
- Mild arm swing decrease – a form of bradykinesia
Tremor May Be Induced by Other Factors: Tremor May Be Induced by Other Factors: Drugs: valproate, SSRIs, TCAs, dopamine blockers, immunosuppressants, amiodarone, lithium, nifedipine, asthma medications, stimulants (caffeine) … Endocrine: thyroid, pregnancy… Cerebral palsy: means FIXED deficits over time
Enhanced physiological tremor (EPT) Enhanced physiological tremor (EPT) - Fast, low amplitude “normal” tremor
- NOT possible to definitely distinguish from ET
- No clear change over time
Primary neurological and psychiatric tremors - Psychogenic, psychosomatiform tremor
- Dystonia, focal tremors - primary writing tremor
- Wilson’s disease
- Stroke
Anxiety, stress & fatigue worsen all forms of tremor Anxiety, stress & fatigue worsen all forms of tremor - Failure to address severe anxiety or stress may impair ability to respond to tremor suppressant treatments
Psychogenic/psychosomatiform movements - Can occur in isolation or in addition to ET
- Are not “conscious” or “weak”
- Tremor “attacks”, non-ET tremor forms
- Psychogenic gait, voice breaks, non-ET voice changes
- Psychiatric disease or abuse/trauma increase risk, but are NOT necessary for this diagnosis
Co-contraction of agonist and antagonist muscles creates involuntary postures Co-contraction of agonist and antagonist muscles creates involuntary postures “Dystonic tremor” is a disputed label - May be very task specific
- Irregular
- Components of pulling
Dystonia in children may have severe prognosis - Try essential tremor treatments or dystonia treatments?
Improving understanding of essential tremor causes = the best route to effectively design and use therapies Improving understanding of essential tremor causes = the best route to effectively design and use therapies However… no need to wait! We can act on symptoms, and push research NOW Important to think about goals of treatment: - Improve daily function?
- Improve specific tasks?
- Alleviate anxiety?
- Wipe out tremor?
Therapies for Children and Adults Therapies for Children and Adults - Medication
- Non-medication – cognitive/behavioral, PT, OT, SP, other holistic therapies
- Cool stuff
Therapies Aimed Toward Adults If Meds Ineffective - Surgery – deep brain stimulation, thalamotomy
- Procedures - botulinum toxin (neck, voice > limbs)
Propranolol (Inderal) - Only FDA approved agent for ET - Propranolol (Inderal) - Only FDA approved agent for ET
- Effective beta adrenoreceptor antagonist; 1971 introduced in ET
- Start with a low dose, 12.5mg to 25mg & titrate up
- Propranolol LA may be better
- Note that data on other beta-blockers is limited
- Atenolol (Tenormin), sotolol (Betapace), nadolol (Cogard) have some evidence
- Pindolol (Visken)may cause tremor
- Primidone (Mysoline)
- GABA agnonist & antiepileptic medication
- Start LOW, 12.5mg or 25mg in the evening to avoid acute ataxia, vertigo, nausea
Medication Adverse Effects Contraindications Medication Adverse Effects Contraindications Beta Blockers Bradycardia Bradycardia Hypotension Heart block Depression Bronchial asthma General slowing CHF Insomnia DM Weight gain Nausea & vomiting Hallucinations
Medication Adverse Effects Contraindications Medication Adverse Effects Contraindications Primidone (Mysoline) Ataxia Porphyria Vertigo Phenobarb. sensitivity Nausea & vomiting Hyper-irritibility Anemia Depression Sedation
Topiramate (Topomax) - Topiramate (Topomax)
- Blinded study = 24 patients cross over design
- Worth the cognitive side effects? Start w/low dose
- Gabapentin (Neurontin) Inconclusive evidence
- Only blinded study = 16 patient 3-way design
- Nimodipine (Nimotop) – limited evidence
- Benzodiazepines – Not recommended generally in kids
- Alprazolam (Xanax), clonazepam (Klonoprin) & others are LA but have dependency a concern
- Limited or negative data, but commonly used
- May help w/ anxiety at expense of side effects
- Note impact on gait!
Data quality Data quality - As of late 2005, only 2 of 159 published clinical trials used more than 50 patients
Note level of efficacy - Medications can reduce tremor by 60% or more in roughly 50% of patients
- Surgery excellent: balance risk/benefit
Tolerability - Survey of 223 patients
- 71% had tried propranolol/primidone
- 56% had discontinued one or both meds
Assistive & Adaptive Technology - Assistive & Adaptive Technology
- Spoon/fork/knife programmed to oscillate counter to tremor
- SteadyMouse tremor dampening software & ARC anti-tremor pen
- Lift Pulse App
- Therapeutic Devices
- Wrist weights & other devices
- Neuroprostheses
Assess for other issues that impact balance Assess for other issues that impact balance Impaired vision Peripheral neuropathy
Potential future treatments Need research! DBS may improve gait – or worsen balance?? Typical ET medications seem to have no impact on balance
Anxiety vs. tremor in ET is a growing area of research Anxiety vs. tremor in ET is a growing area of research - On range of problem mainly, some on interventions
- Anxiety is commonly reported in ET
- Reactive? A primary problem?
Factors that may be associated with worse anxiety - Not tremor amplitude!
- Cognitive impairment ? Depression?
So what? - Anxiety may cause social avoidance, restriction of activities, inability to experience benefit from tremor medications
- Treating anxiety may lessen tremor & this is not cheating!
Potential treatments Potential treatments - Need research!
- Propranolol may lessen situational anxiety
New treatments in the now - Evaluation by neuropsychologist, psychologist, or psychiatrist
- Effective treatments differ – find the right one(s) for the student
- Many medication and non-medication options, but use caution with benzodiazepines as they are not the answer
- Exercise!
- Assess for other issues that can impact mood, for example, life stressors, panic disorder
Growing area of research Growing area of research - On range of problem, on etiology, some on interventions
- Depression is commonly reported in ET - Reactive? A primary problem?
- Potential role for the cerebellum in both
Factors that may be associated with worse depression - Not tremor amplitude!
- Cognitive impairment? Younger age?
So what? - Depression affects perceived health status in ET – at any level of tremor severity
- Depression worsens cognition & can manifest as real symptoms in the body
Potential treatments Potential treatments - Needs research!
- Propranolol and benzodiazepines may worsen depression
New treatments in the now - Evaluation by neuropsychologist, psychologist, or psychiatrist
- Effective treatments differ – find the right one(s) for the student
- Many medication and non-medication options!
- Exercise!
- Assess for other issues that can impact mood, such as untreated hypothyroidism, bipolar disorder
Tremors come in many forms Tremors come in many forms Essential tremor is the most common movement disorder Disability may be more about non-tremor symptoms than the tremor itself There are many options for symptom control of the tremor and associated symptoms
Investigate the student’s tremor and non-tremor symptoms Investigate the student’s tremor and non-tremor symptoms - Think about clinical picture, symptoms, change over time
- Observe effects of treatments
- Ask if the tremor label makes sense over time?
- Are non-tremor symptoms ET or something else?
Explore pros and cons of potential treatments - What symptom(s) will the treatment address?
- Does the risk / benefit equation make sense for the student?
- Second opinions are not insults
- Interdisciplinary, holistic approach
- Consider larger overall goals of treatment
Emotional Distress Behavior Emotional Distress Behavior Social anxiety Fear, worry Social isolation Depression Awareness of the Motor Dysfunction
Assess student health status to identify needs Assess student health status to identify needs Refer students appropriately Establish plans to help students manage diagnosed ET Teach and counsel about health and ET care (Louis, Rohl & Rice, 2015) Coordinate care delivery Evaluate student response to health interventions Identify learning problems that impact full participation
Advance universal protective factors that lead to positive student health and educational outcomes Advance universal protective factors that lead to positive student health and educational outcomes Serve as guide for academic team to take supportive actions Involve decision-making processes that facilitate student, family, and community engagement in school life Give students academic, emotional & social skills in school Use classroom management & teaching methods to foster a positive learning environment Promote a climate of trust and support
Individualized Education Plan (13 defined disabilities under IDEA, Galemore & Sheetz, 2015) Individualized Education Plan (13 defined disabilities under IDEA, Galemore & Sheetz, 2015) Section 504 Plan (Those with disability are protected from discrimination) Related school based health services: - Therapies: OT, PT, SP
- Adaptive PE
- Vocational & educational counseling (Gillespie, 1991)
Avoid grading for neatness in handwriting, keyboarding Avoid grading for neatness in handwriting, keyboarding Use weighted pencils, Dr. Grip™ pens, wrist weights, sturdy straws Access to school provided iPad/computer & speech recognition software, such as Dragon Provide class outlines to limit need for note taking Use non-standardized answer sheets, “x” for correct response Assign science lab partner to handle beakers, sharp tools Utilize a tape recorder, other assistive technology Schedule study hall at end of school day when fatigue sets in
S: Student states that she feels upset, “hurt” about the teacher’s remarks that her work is too messy and she takes too much time to write out answers. If student goes back to class everyone will stare at her. The shaking problem has been present for a long time. The child says she can’t help it and she is doing her best. S: Student states that she feels upset, “hurt” about the teacher’s remarks that her work is too messy and she takes too much time to write out answers. If student goes back to class everyone will stare at her. The shaking problem has been present for a long time. The child says she can’t help it and she is doing her best. O: Child has trembling hands with action, like the example seen on the DVD. She is crying, tearful. Temp is normal, BP/P/RR are slightly elevated. There is no prior history of problems r/t the child’s health, growth or development. How might you open the conversation with this student to gather more information in the assessment process?
What brought you to the health office today? What brought you to the health office today? Has anything worked before? Do you want to try that now? Are there others on the team that can help us problem solve?
History: General health? Conditions? Accidents? Absences from school/class? Important things you do to keep healthy? Current health concerns? What do you think has caused this? What actions have you taken since it started? Has it helped? What things are most important to your health? History of allergies, medications, OTCs, substances, CAMs, treatments? Responses? Healthcare providers? Family history of similar/other neurological conditions? Traditional, cultural practices, taboos? History: General health? Conditions? Accidents? Absences from school/class? Important things you do to keep healthy? Current health concerns? What do you think has caused this? What actions have you taken since it started? Has it helped? What things are most important to your health? History of allergies, medications, OTCs, substances, CAMs, treatments? Responses? Healthcare providers? Family history of similar/other neurological conditions? Traditional, cultural practices, taboos? Nutrition & Metabolism: Does child eat at school? Where? Daily food & fluid intake? Appetite? Patterns? Food access? Weight changes? Elimination: Bowel & urinary elimination patterns? Odors?
4. Activity & Exercise: Energy for required activities? Exercise patterns, types, leisure activities? Perceived ability to perform ADLs? Tremor movement type, location, onset, patterns, associated symptoms? Worsening & improving factors? Movement awareness? Things that reduce or eliminate tremor? 5.Sleep & Rest: Sleep routine? Current patterns? Sleep problems including limb movements? Rest & relaxation periods? Rested for activity? 6. Cognitive-perceptual: Hearing? Vision? Glasses? Discomfort or pain? Memory? Easiest way to learn? Ease in making important decisions? Present level of understanding health condition? Ability to use information? Change readiness? Academic performance level? Recent changes? Prior academic testing? Identified learning disabilities? IEP or 504 Plan?
7. Self-perception/self-concept: Describe self? How does student feel about him/her self? Changes in body appearance? Changes in things student can do? What things that make child feel fearful? Angry? Annoyed? Worried? Sad? Not able to control things? Concern about things (tremor) interfering with activities? What works? Vocal tremor? Speech pattern? Posture? Nervous? 8. Role relationships: Family structure? Relationships? Difficulty handling problems? Changes? Friends? Social groups? Do things generally go well at school/home? Feel part of community? Problems with other children? How is child managing? Family financial concerns? Behavior changes? 9. Sexuality reproduction: as appropriate to the student’s age & situation
10. Coping-stress tolerance: Big life changes in last year or two? Who is most helpful in talking things over? Tense or relaxed most of the time? When tense, what helps? What do you do/or use to relax? If so what? If there are big problems in your life? How do you handle them? Avoidance or withdrawal? Most of the time, are these ways successful? 10. Coping-stress tolerance: Big life changes in last year or two? Who is most helpful in talking things over? Tense or relaxed most of the time? When tense, what helps? What do you do/or use to relax? If so what? If there are big problems in your life? How do you handle them? Avoidance or withdrawal? Most of the time, are these ways successful? 11. Value-belief pattern: Do you generally get things you want from life? Important plans for the future? Are religious beliefs and practices important to you? Does might this factor into choices or decisions when health challenges arise? Physical assessment: Ability to write, feed, dress, do hygiene & grooming
Consult your organization’s health services referral guidelines Consult your organization’s health services referral guidelines Initiate referral to PCP for (a) management of student’s acute and (b) chronic medical conditions and (c) need determination for movement or other specialist services Educate parent/student on the movement specialist’s role Instruct parent in insurance preauthorization & referral procedures Refer the parent of the student back to other specialists for worsening medical problems and disabilities Track referral results in student health record
Address student specific health needs w/holistic focus Address student specific health needs w/holistic focus Improve & maintain health status while achieving educational goals Guide the provision of quality nursing care Ensure care coordination & continuity among providers Identify student specific outcomes to interventions May supplement the IEP or Section 504 Plan for qualifying students
Code Action Type Definition____________ Assess/Monitor/Evaluate/Observe Evaluating pt. condition Care/Perform/Provide/Assist Performing actual pt. care Teach/Educate/Instruct/Supervise Educating pt. or caregiver Manage/refer/Contact/Notify Managing care on behalf of the pt. or caregiver
Students receive appropriate referrals for assessments made Students receive appropriate referrals for assessments made There is an improved cost-benefit in screening & referring children at risk for health conditions that consistently affect a child’s daily activities a great deal* There is maintenance of coordinated, comprehensive, ongoing care within the medical home* for SCHCN There is increased time in learning environment* (health office disposition) Safe environment* (free of harassment/bullying behaviors, as measured by social skills development in students) - * Maternal Child Health Bureau Core Outcomes for CSHCN, 2010
Let’s consider: Let’s consider:
- potential nursing diagnoses that might be appropriate for a student who is diagnosed with ET
- what care elements might be reflected in an individualized healthcare plan for the student with ET
Engage and empower the student Engage and empower the student Take your time with the child and family Explain things in terms the student understands Appreciate the student’s situation Meet the student’s needs
First hand account from people living with ET - First hand account from people living with ET - - child, adolescent & adult perspectives
ET support group’s anecdotes Seriousness of the situation that those with ET face
Local: social workers, counseling, child psychological & psychiatric support services, community resources as indicated Local: social workers, counseling, child psychological & psychiatric support services, community resources as indicated ET Organizations: HopeNET, Tremor Action Network (TAN), WE MOVE, IETF & National Tremor Network, UK Assistive Technology & Disability Info: TAN Open Access Journal: Tremor and Other Hyperkinetic Movements More Info & Clinical Trials: NINDS ClinicalTrials.gov, MyClinicalTrialLocator.com and ClinicalResearchTrials.gov (Gray, 2015)
Get informed - about ET & read the e-materials Get informed - about ET & read the e-materials Get involved – sign up on the clipboard to continue the conversation Lead - a lunch bunch group to support students coping with chronic health conditions Educate - others in your community about ET in children Recognize - March as National Essential Tremor Month Join - an organization dedicated to ET
Partner - with ET organizations and health care professionals to raise awareness and advance ET care & research Partner - with ET organizations and health care professionals to raise awareness and advance ET care & research Advocate - for policy, funding & practices for the greater good of people with ET Ask – policy/law makers to support research for better treatments - Respectfully ask your U.S. Senators to support the “21st Century Cures” Senate Bill that will parallel H.R.6
- The bill’s “NIH & Cures Innovation Fund” is a necessity
- Learn more about this at the Tremor Action Network (TAN)
Children with ET are not alone in the fight for solutions Children with ET are not alone in the fight for solutions There is a network of support to help those with ET Ongoing initiatives are addressing ET questions: - Education on holistic care options
- Development of an ET common data element set
- Research on the causes of and treatment of ET
- Centers of excellence to improve ET care
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