apna 25th annual conference october 19, 2011 · apna 25th annual conference october 19, 2011 sulzle...

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APNA 25th Annual Conference October 19, 2011 Sulzle 1 Clinical Nurse Specialist in Child and Ad l t P hi t Adolescent Psychiatry PrairieCare Medical Group, Edina, Minnesota This speaker will discuss off label use of medication but has no conflict of interest to disclose Participants will be able to: Repeat 3 different statistics on autism. State the 3 areas of deficits for autism based on DSM-IV criteria. State two differences in the proposed new State two differences in the proposed new criteria for diagnosis of autism. State what therapies are based on evidence base practice (EBP). List two medications presenter has found helpful in treatment of children within the autistic spectrum (ASD). 1 in 110/150 kids are “in the spectrum” . 4-5 male to female, but 2:1 female to male who are severely retarded. 40% of children in ASD are non-verbal (CDC). 215 times more likely after 1 child with ASD. 35-50% have seizure disorder by age 20 (Child and Adolescent Psychiatry , 2003). 30-60% of children with ASD are on psychotropic medications (Rosenberg, et al, 2010). Having a child with autism typically decreases a family’s income by $6,200 or 14% of annual income (IACC). Both medical and non-medical can cost up to $67, 000 (New Y k Ti 8 29 11) York Times, 8-29-11). Children with autism typically have more medical expenses than those without autism 3.2 million dollars spent over lifetime for care of child with autism (CDC).

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Page 1: APNA 25th Annual Conference October 19, 2011 · APNA 25th Annual Conference October 19, 2011 Sulzle 3 Also funded by ARRA Early Autism Risk Longitudinal Investigation (EARLI) 3 sites

APNA 25th Annual Conference October 19, 2011

Sulzle 1

Clinical Nurse Specialist in Child and Ad l t P hi tAdolescent Psychiatry

PrairieCare Medical Group, Edina, Minnesota

This speaker will discuss off label use of medication but has no conflict of interest to disclose

Participants will be able to: Repeat 3 different statistics on autism. State the 3 areas of deficits for autism based on

DSM-IV criteria. State two differences in the proposed new State two differences in the proposed new

criteria for diagnosis of autism. State what therapies are based on evidence

base practice (EBP). List two medications presenter has found

helpful in treatment of children within the autistic spectrum (ASD).

1 in 110/150 kids are “in the spectrum” .

4-5 male to female, but 2:1 female to male who are severely retarded.

40% of children in ASD are non-verbal (CDC).( )

215 times more likely after 1 child with ASD.

35-50% have seizure disorder by age 20 (Child and Adolescent Psychiatry, 2003).

30-60% of children with ASD are on psychotropic medications (Rosenberg, et al, 2010).

Having a child with autism typically decreases a family’s income by $6,200 or 14% of annual income (IACC).

Both medical and non-medical can cost up to $67, 000 (New Y k Ti 8 29 11)York Times, 8-29-11).

Children with autism typically have more medical expenses than those without autism

3.2 million dollars spent over lifetime for care of child with autism (CDC).

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APNA 25th Annual Conference October 19, 2011

Sulzle 2

Social deficits Little “affect” use in

communication Few friends. Doesn’t share life’s

experiences. No social/emotional

reciprocity. Doesn’t play with, but

next to.

Communication Late to speak/no

speech Unable to start or

k tikeep a conversation Echolalia

Weird use of language

Lack of make believe play

Stereotypical patterns: Flapping Biting self Need for routine Need for routine

Preoccupation with parts

Non-functional routines

Restricted interests

Sensory issues Tags, lights, sounds,

tastes, textures

Trouble with transitions Seasonal Seasonal Classroom Bedtime

Concrete interpretation of language “School” example Constantly correcting

people

Proposed DSM‐V http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=94#

ARRA, 2009

American Recovery and Reinvestment Act of 2009 3 million dollars for research

UC Davis Center Children’s Environmental Health (CCEH) Better understand risk and severity factors of ASD

ID early markers of susceptibility for ASD ID early markers of susceptibility for ASD

Develop mouse models

Develop diagnostic tools based on research to ID at risk kids

Provide information to community on risk factors (National Institute of Environmental Health-Sciences-National Institutes of Health [NIEHS-NIH]).

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APNA 25th Annual Conference October 19, 2011

Sulzle 3

Also funded by ARRA

Early Autism Risk Longitudinal Investigation (EARLI) 3 sites with 1200 total pregnant women who already have a

child with autism. Looks at genetics and enviromentLooks at genetics and enviroment

Will follow from the time mom knows until the child is 36 mo old

Funded by grant from Autism Speaks (NIEHS-NIH)

Possible Causes

Not vaccines IOM, 2004. Immunization Safety Review: Vaccines and

Autism. “Favors rejection of a causal relationship between the MMR

vaccine and autism” http://iom.edu/Reports/2004/Immunization-Safety-Review-Vaccines-and-Autism.aspx.

Bearman interview, 2009 National Institute of Mental Health (NIMH) Focus of work is autism prevalence at Columbia described reason for

increase as: Change in dx criteria 25%

ASD and other neuro-developmental disorders, 16%

The rest is unknown cause of increase in prevalence, perhaps parent age

Possible causes

Mutation in SHANK2 and SHANK3 . These genes impact functioning of synapse (Berkel, et al., 2010).

Known genetic causes 5-15%. 19% of 996 people studied had abnormalities, with each abnormality in only 1% of the people (Pinto, et al., 2010).

Gene CNTNAP2 on fMRI had changes in connections to frontal lobe and other parts of brain than those who did not have the gene. Not all children with risk gene had ASD, but all showed abnormalities (Scott-Van Zeeland, et al., 2010).

All information taken from Interagency autism coordinating committee (IACC) Summary 2010.

New Research

Center for Children’s Environmental Health (CCEH) out of UC Davis Looking at factors that may be associated with autism

Environmental toxins

Medical history Medical history

Lifestyle factors both before and after birth

Lipids, amino acids, and sugars

Gene activity

Immune system function (National Institute of Environmental Health-Sciences-National Institute of Health [NIEHS-NIH]).

Findings from Effective Health Care Program April, 2011◦ Looked at interventions in Behavioral Treatment Educational Medical Allied health (speech, OT, PT) Complimentary and alternative medicine (CAM)

(Agency for Healthcare Research and Quality [AHRQ]).

Review based on children 2-12 within the autistic spectrum.

Medline, PsychINFO, and ERIC Excluded

Non English articles◦ Non-English articles◦ Not pertinent to questions◦ Published prior to 2000.◦ Not original research◦ “Did not present aggregated results” p. 4◦ Fewer than 10 participants for all areas other than

medical where it was 30

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4,120 citations Included 183

articles 159 unique studies

h f Strength of evidence was rated as ◦ Insufficient◦ Low◦ Moderate◦ High

78 Behavioral studies◦ The intention is early and intense improve core

deficits. Defined as early, intense developmental

programsprograms◦ May be helpful for core areas, but; Few Random Controlled Trials (RCT) None compare different treatments “Little evidence of practical effectiveness or feasibility

exists”. P 5. Few studies have been published.

Intense programs have low strength of evidence;◦ UCLA/Lovaas Greater improvement than eclectic approach. Strength of evidence is low. Change in children is not universal.

h ld h f Many children continue with significant impairment.◦ Not all display rapid gains.

Early Start Denver Model (ESDM) Positive results reported, but

Few studies have been published for any intensive program.

New results◦ Odom, Boyd, Hall, and Hume (2010) reported of 30 models. Many did not have measureable outcomes these did: Denver Model LEAP (Learning Experiences and Alternative Programs for

Preschooler and their Parents UCLA Lovaas Institute May Institute PCDI (Princeton Child Development Institute)

◦ ESDM group had 17.6 pt increase in IQ vs 7 pt increase. Increase in adaptive skills versus loss of skills. 7/24 changed to PPD versus 1/24 had a change (Dawson, et al.,

2010) From the 2010 IACC Summary.

Parents interventions◦ Focused on training parents

Short-term gains◦ Communication◦ Language useLanguage use

Lack consistency in ◦ Interventions◦ Outcomes◦ Generalization of social skills

Overall show positive results, but insufficent strength of evidence.

15 studies met criteria Treatment and Education of Autistic and

Communication related handicapped Children (TEACCH) program◦ Most of these studies were complete prior to 2000◦ Most of these studies were complete prior to 2000.◦ Improved motor, eye-hand coordination and

cognitive.◦ But evidence was insufficient Too few studies Measured outcomes not the same

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The National Professional Development Center on Autistic Spectrum Disorders (NPDC on ASD).◦ Website that lists 24 evidence based practices (EBP),

not models.◦ What is EBP?◦ Has modules of some of the 24 practices. Free modules

An article citing this research was found in IACC summary.

42 studies, 27 were RCT. No treatment for social or communication. Aripiprazole and risperidone at least 2 RCT

eachDo show improvement for repetitive and◦ Do show improvement for repetitive and challenging behavior.◦ Improvement in hyperactivity and non-compliance.◦ Considerable side effects Weight gain Sedation Risk of EPS

High evidence for adverse effects. Moderate for risperidone to effect challenging behavior. High for aripiprazole effect on challenging behavior (AHRQ). Other research◦ 15 charts reviewed, 73% significant improvement in

anxiety/mood with citalopram (measured on CGI)anxiety/mood with citalopram (measured on CGI)◦ For treatment for children with Asperger's. Therapy first for

all anxiety disorders. For acute anxiety; benzos, buspirone. OCD; SSRI or chlomipramine. Social phobia; alprazolam, clonidine. Specific phobia; propranolol. Depression; SSRI, SNRI, mirtazapine, Li. ADHD; stimulants, atomoxetine, TCA’s, buproprion , clonidine, guanfacine. Sleep; melatonin, antihistamines. clonidine, imipramine, trazodone (Tsai, 2007).

Retrospective study◦ 34 children and adolescents.◦ Mean dose 8.1 mg to 13 mg.◦ 1/3 had much or very improved on CGI.◦ 1/3 minimally improved./ y p◦ 1/3 unchanged or worse. 35.3% stopped medication because ineffective or side

effects. (Masi, et al., 2009).

40 subjects 8-56◦ All DD, 36 with ASD.◦ 22 week crossover study.◦ 24 weeks open after. ◦ 58% had better than 50% decrease measured

behavior.◦ 88% showed a 25% decrease (Hellings, et al., 2006).

17 studies;◦ Sensory integration and music therapy were poor

quality.◦ Auditory integration showed no improvement.◦ Language and communication interventions; Picture Exchange Communication System (PECS) and

Education and Prelinguistic Milieu Training (RPMT) Short term improvement. But no effect durability. Need further study.

No allied health had adequate research to assess strength of evidence

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Not enough evidence to assess.

What are the modifiers of outcome for different treatments? Only 2 studies looked at modifiers.◦ Study between 2 communication systems (Picture exchange

communication system [PECS] and Responsive education and prelinguistic milieu training [RPMT]). Showed some benefit in joint attention in the RPMT but j

had restrictions on the benefit.◦ Other looked at using intense program (UCLA/Lovaas)

having two different providers (parents at home/clinical setting) showed no difference.

◦ Areas of potential, but need more studies.◦ Overall studies failed to show correlates between autism

and treatment response.

Early results predict outcome.◦ No information about early results that would

predict long term outcomes. End of treatment predict outcome. ◦ Only 1 study predicted longer range outcomes,O y study p ed cted o ge a ge outco es,

outcomes 12 months post intervention. Generalization of treatment outcomes.◦ Behavior studies outside of therapeutic setting. But only reported by parents.◦ Medical studies were seen outside of setting. Collaborated by parents and teachers.

What specific component of treatment influence outcome?◦ No studies addressed this.

Treatments for children under 2 at risk for ASDASD◦ One RCT study in ESDM with positive results Adaptive behavior Language Cognitive outcomes Close to 30% of children had shifts in dx shifts, but not

in severity of ADOS

Practice based medication Setting;

4 site organization .

Specializes in ASD.

Day treatment.

All services except medical.

Provide care at 3 different sites;

Kids know the site.

Talk with other providers.

Secure e‐mail.

Clear referral system.

Co‐morbid anxiety/depression Increased risk of depression and anxiety disorders (Tsai, 2007). 

Can be DSM‐IV anxiety disorders

Can be different Reactive

Irritable

Not sure if a part of biology and/or because they don’t fit

Non‐FDA approved for anxiety Citalopram

Fluoxetine (is FDA for children 8 and up)

Guanfacine short and long acting

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ADHD Symptoms DSM‐IV prohibits diagnosis in kids with ASD.

50% have problems with core symptoms.

Stimulants can help.

Have decreased effectiveness Have decreased effectiveness.

Increased adverse reactions (Floyd and McIntosh, 2009).

Still use stimulants first.

Have recently found guanfacine long acting very helpful.

1 mg at HS increase as needed/tolerated

Sleep Issues Significant sleep issues (Tsai, 2007),

Study of 167, 86% had 1 sleep problem daily (Liu, Hubbard, 

Fabes, & Adam, 2006).

Good sleep hygiene Good sleep hygiene.

Mood disorders?

Medications for sleep;

Melatonin

Guanfacine short and long acting

Clonidine

Atypicals Aripiprazole  and risperidone FDA approved

Aripiprazole first, typically better tolerated

Risperidone for “sex and aggression”

Quetiapine for severe anxiety and/or sleep problems (non‐FDA approved)

Have used combination of XR and IR

Be sure to do lab work

FBS, Lipid profile minimally, add CBC and LFT if doing anyway

Monitor

Weight, B/P, and height for BMI

Strategies No power struggles

Patience

Patience

P i Patience

Patience

Know their interests

Be very careful with humor

If you don’t want to work with these kids, don’t they will know it

Nursing skills at their best!

Other therapies Applied Behavioral Analysis Therapy (ABA).

Sensory therapy.

S h  h Speech therapy.

Food therapy.

Social skills.

ReferenceReference Agency for Healthcare Research and Quality (AHRQ). http://www.effectivehealthcare.ahrq.gov/ehc/products/106/651/Autism_Disorde

r_exec-summ.pdf Berkel, S., et al. (2010). Mutations in the SHANK2 synaptic scaffolding gene in

autism spectrum disorder and mental retardation. Nature Genetics, 42(6), 489-491.

Center for Disease Control and Prevention (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network. htt // d / bddd/ ti / dd ht lhttp://www.cdc.gov/ncbddd/autism/addm.html

Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., Donaldson, A., & Varley, J. (2010). Randomized, controlled trial of an intervention for toddlers with autism: The Early Start Denver Model. Pediatrics, 125(1), e12-23.

Freeman Floyd, E. , & McIntosh, D.E. (2009). Current practice in psychopharmacology for children and adolescents with autism spectrum disorders. Psychology in the School, 46(9), 905-909.

Hellings, J.A., et al. (2006). A crossover study of risperidone in children, adolescents, and adults with mental retardation. Journal of Autism and Developmental Disorders, 36(3), 401-411.

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Sulzle 8

ReferencesReferences Institute of Medicine (IOM).

http://iom.edu/Reports/2004/Immunization-Safety-Review-Vaccines-and-Autism.aspx

Interagency Autism Coordinating Committee (IACC). ◦ http://iacc.hhs.gov/summary-advances/2010/index.shtml

Liu, Z., Hubbard, J.A., Fabes, R. A., & Adam, J.A. (2006). Sleep disturbances and correlates of children with autism spectrum disorders. Child Psychiatry Human Development, 37, 179-191.p

Masi, G. ,et al. (2009). Aripiprazole monotherapy in children and young adolescents with Pervasive Developmental Disorders: A retrospective study. CNS Drugs, 23 (6), 511-521.

New York Times (August, 29th, 20100). Dealing with the financial burden of autism. By W. Konrad. http://www.nytimes.com/2010/01/23/health/23patient.html?ref=health

National Institute of Mental Health (NIMH).◦ http://www.nimh.nih.gov/

National Institute of Environmental Health Sciences-National Institutes of Health, NIEHS-NIH.◦ http://www.niehs.nih.gov/health/topics/conditions/autism/index.cfm

ReferencesReferences

National Professional Development Center on Autistic Spectrum Disorders (NPDC on ASD).http://autismpdc.fpg.unc.edu/content/evidence-based-practices.

Odom, S.L., Boyd, B.A., & Hume, K.J. (2010). Evaluation of comprehensive treatment models for individuals with autism spectrum disorders. Journal of Autism Developmental Disorder, 40(4), 425-36.

Peterson, B.S. Director of Child and Adolescent Psychiatry, Columbia College of Physicians and Surgeons. Approval received, fall, 2010.

Pinto, D., et al. (2010). Functional impact of global rare copy number variation in autism spectrum disorder. Nature, 466(7304), 368-372.

Scott-Van Zeeland, A.A., et al. (2010). Altered functional connectivity in frontal lobe circuits is associated with variations in the autism risk gene CNTNAP2. Science Translational Medicine, 2(56), 56-80.

Tsai, L.Y. (2007). Asperger Syndrome and Medication Treatment. Focus on Autism and Other Developmental Disabilities, 22(3), 138-148.