RFA-2018-01 Screening for Tics in Children

DRDC Solicitation #:  RFA-2018-01

Project Title: Screening and identification of tics, tic disorders, and other mental, emotional and behavioral disorders in children

Short Title: Screening for Tics in Children

Maximum Budget: $350,000 per year (includes direct and indirect costs of applicant)
NOTE: Awards will be based on merit and are subject to the availability of funding.

Project period:  3 years

Anticipated Number of Awards:  1 or 2

Due Date: no later than 8PM Eastern on Monday, March 5, 2018

How to Apply:  https://www.disabilityresearchcenter.com/research/application-instructions/

Project start date:  September 30, 2018

IMPORTANT! Questions received from applicants and answers provided by the DRDC will be regularly updated and posted here.  Please be sure and check this page often, and especially before you submit your application.

Eligible Applicants. Proposals are invited from universities, research institutions, non-profit organizations, healthcare entities, and other health professionals. This opportunity is open to applicants from U.S. institutions only.

Center/Division goal(s) and priorities aligned with this research project. Help children reach their potential by understanding developmental disabilities; and improve the health of people living with disabilities. The Division of Human Development and Disability (DHDD) focuses on preventing secondary conditions and enhancing quality of life among people who already have a disability.

NOTE: (Posted January 30, 2018) You may request a copy of the MOVeIT screener by emailing the DRDC at info@disabilityresearchcenter.com.

Purpose

The primary purpose is to determine how screening measures for tics can improve the identification of tic disorders and serve as a marker for an increased risk of other mental, emotional, and behavioral disorders, including attention-deficit/hyperactivity disorder (ADHD).

 Background 

Persistent tic disorders, including Tourette syndrome (TS), are characterized by the presence of tics for over a year, and can be associated with significant impairment in multiple domains (e.g. family, school, social relationships).1 As many as 25% of children have tics at some time during development, and approximately 1% of children have a tic disorder.2 Estimates limited to children with previous diagnoses of tic disorders suggest that approximately half of children meeting criteria for a tic disorder may not have a diagnosis. Delays of up to 4 years to diagnosis have been reported.3

If tics and tic disorders are not identified in a timely manner, children may not receive treatment, and a misunderstanding of their tics may cause problems in school and in social relationships. Challenges with identifying tics may include confusion with symptoms of other conditions (e.g. coughing with allergies, eye blinking with vision problems), or dismissal of tics as nervous habits. In addition, tics can “wax and wane” or be suppressed for short periods of time, and therefore may be missed during a routine healthcare visit.4 Even when an individual is aware of having a tic disorder, they don’t always report having a tic.5  

Tics may serve as a “marker” of other mental, emotional, and behavioral disorders.2 Approximately 80% of children with TS have a co-occurring mental, emotional, or behavioral condition. The most common co-occurring conditions are attention-deficit/hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD). Other frequently co-occurring conditions include anxiety disorders, depression, autism spectrum disorder, conduct disorder, and oppositional defiant disorder.1, 6 Children with tic disorders are also at increased risk for speech and language problems,1 explosive outbursts (or rage),7 and suicidal thoughts and behaviors.8

Improving the timely identification of tic disorders and other mental, emotional, and behavioral disorders can expedite referral to appropriate treatment if needed, which can promote healthier outcomes. New instruments for identifying tics and tic disorders have recently been developed and implemented in research and clinical settings. The proxy-report questionnaire (PRQ)9 has been validated as a screening instrument to identify tic disorders generally, but has low sensitivity when relying on a single respondent.9 The Motor or vocal inventory of tics (MOVeIT) was recently developed as a screener for tics, with a focus on maximizing sensitivity. Initial validation results suggest that the MOVeIT has over 90% sensitivity and over 80% specificity using parent report to identify children with tic disorders or tics. Two diagnostic tools for tic disorders have also recently been developed: the Description of Tic Symptoms (DoTS), and the Diagnostic Interview Schedule for Children, 5th edition (DISC-5, will include modules for 30 mental disorders in total), which assess Diagnostic and Statistical Manual of mental disorders, 5th edition (DSM-5)10 criteria.

With the availability of screening instruments, it is now possible to test whether these screeners improve the identification of tic disorders, and if tics can serve as a marker of other mental, emotional, and behavioral disorders among children in a general population setting.

Research Goals and Objectives 

The goals of this research are to 1) determine how screening for tics can improve the identification of tic disorders including TS, and 2) determine the degree to which tics can serve as a marker for other mental, emotional, and behavioral disorders, including ADHD and at least one other disorder, in a general population (e.g. school, primary care) of children.

The research objectives include:

  • Compared to a “gold standard,” determine the sensitivities and specificities of the tic screener (e.g. MOVeIT) in identifying tic disorders and other mental, emotional, and behavioral disorders concurrently and at a follow-up visit approximately one year later.
  • Determine the sensitivities and specificities of the tic screener to identify children with elevated symptoms of non-tic disorders (e.g. depression, anxiety, OCD, ADHD, or other behavioral disorders).
  • Other questions of interest include:
    1. whether the screener identifies new cases of disorders (not only previously identified),
    2. the optimal ages for screening for tics,
    3. whether families receive referrals and/or treatment between the initial screening and follow-up evaluation.

The grantee will work in collaboration with CDC to finalize the study methodology and inform analytic decisions.

 Required Application Elements

Applicants should describe and document:

  • The size and characteristics of the population that will be the source for recruitment for screening. Recruitment and incentive strategies to maximize participation (e.g., by parents, children, teachers, and/or providers) in the study, including prior success using those recruitment strategies for the specified populations;
  • The “gold standards” that will be used for validation of the screening tool in identifying tic disorders, other mental, emotional, and behavioral disorders, and symptoms of these disorders, and the available evidence supporting the selection of the proposed gold standard. Gold standards might include, but are not limited to, expert clinical assessment, or use of a validated tool for specific symptoms or diagnoses.
  • An analytic plan including the calculation of sensitivity and specificity of the tic screen;
  • Power analyses to determine optimal sample sizes to identify relevant subgroups of children, (e.g., children with or without tics, tic disorders, ADHD, or other disorders), including the proposed proportion of children that screen high and low for tics to be assessed with the gold standard. Power analyses can be based upon a tic disorder population prevalence of 1%
  • A data collection, management, and dissemination plan that reflects the process by which the project data will be protected, cleaned, delivered, and prepared for publication in reports, presentations, and peer-reviewed journal articles. This plan should include how de-identified data will be shared with CDC, including child characteristics (demographics including child age, sex, race, ethnicity), screening results, assessment results, whether the child had previously identified diagnoses of tics, tic disorders, or other mental disorders, information on referral and treatment, and other related data.
  • A plan for compliance with applicable data collection, research participation, and data privacy regulations.

Describe the potential public health impact of this opportunity:

Screening, identification, and referral for services are important roles of public health. CDC collaborated with external partners including the Tourette Association of America, professionals with expertise in Tourette syndrome, and family representatives to develop a public health approach for TS and tic disorders.3 Two areas were identified where public health activities could address the impact of TS and other tic disorders:

  1. Improve early identification and treatment of tics to improve outcomes among people with tic disorders and co-occurring conditions; and
  2. Conduct additional research to determine whether tics may serve as early indicators of tic disorders and other mental, emotional, and behavioral disorders, and assess the utility of integrating the presence of tics into developmental monitoring protocols.

If available tic screeners are able to identify tic disorders and also other conditions or symptoms that may need to be addressed, tic screeners are more likely to be incorporated into routine care. This could improve the identification and referral for treatment not only for tic disorders including TS, but also for more common mental, emotional, and behavioral disorders like ADHD and OCD. Early identification and treatment may lead to improved outcomes among children with these disorders.

References

  1. Bitsko RH, Holbrook JR, Visser SN, et al. A national profile of Tourette syndrome, 2011-2012. J Dev Behav Pediatr. 2014;35:317-322.
  2. Kurlan R, McDermott MP, Deeley C, et al. Prevalence of tics in schoolchildren and association with placement in special education. Neurol. 2001;57:1383-1388.
  3. Bitsko RH, Leeb R, Perou R, et al. Bridging the Gap between Tourette Syndrome and Public Health. 2011. Available at: http://www.cdc.gov/NCBDDD/tourette/documents/BridgingTheGapTSandPH.pdf.
  4. Cohen SC, Leckman JF, Bloch MH. Clinical assessment of tourette syndrome and tic disorders. Neurosci & Biobeh Rev. 2013;37:997-1007.
  5. Lewin AB, Mink JW, Bitsko RH, et al. Utility of the diagnostic interview schedule for children for assessing tourette syndrome in children. J Child Adolesc Psychopharmacol. 2014;24:1-10.
  6. Huisman-van Dijk HM, Schoot R, Rijkeboer MM, et al. The relationship between tics, oc, adhd and autism symptoms: A cross- disorder symptom analysis in gilles de la tourette syndrome patients and family-members. Psychiatry Res. 2016;237:138-146.
  7. Chen K, Budman CL, Diego Herrera L, et al. Prevalence and clinical correlates of explosive outbursts in tourette syndrome. Psychiatry Res. 2013;205:269-275.
  8. Storch EA, Hanks CE, Mink JW, et al. Suicidal thoughts and behaviors in children and adolescents with chronic tic disorders. Depress Anxiety. 2015.
  9. Cubo E, Saez Velasco S, Delgado Benito V, et al. Validation of screening instruments for neuroepidemiological surveys of tic disorders. Mov Disord. 2011;26:520-526.
  10. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (DSM-5). 5th ed. Washington, DC: American Psychiatric Publishing; 2013.