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
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?
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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