Adaptive Care in the Perioperative Setting

For this study the investigators will measure anxiety and distress behaviors using multiple
validated scales, including the modified Yale Pre-operative Anxiety Score (m-YPAS), the
Induction Compliance Checklist (ICC), the Child Induction Behavioral Assessment (CIBA) tool
and the Post-Anesthesia Emergence Delirium scale (PAED). Each of these scales is
observational (as opposed to self-report), so they can be used in young patients who are
not-yet verbal or for developmentally delayed children. Other than the PRAP, the scales were
not originally developed for patients who have developmental delays (our team is not aware of
perioperative behavioral scales that are validated for this population specifically). The
scales are reliable with young, minimally verbal children, so the investigators anticipate
that the scales will provide adequate measures. The investigators plan to document any
challenges in using the scales so that future researchers may consider improving the scales
for this population, if indicated.

In addition to understanding distress behaviors, gaining an understanding of what
interventions are being used to decrease a patient's risk for having distress is also
important. There is limited research describing the use of medication and behavioral
interventions for the ACT population. Multiple articles describe behavioral interventions
that are recommended, but there is little data on what interventions are being used in
clinical practice for high-risk patients. There is also little direct evidence published on
the use of oral anxiety medications for children in the ACT population undergoing surgery. In
2011, Cincinnati Children's Hospital Medical Center published a BESt Evidence Statement on
the use of anxiolytic medications prior to ambulatory healthcare encounters for individuals
with special developmental and behavioral challenges. The statement recommends the use of
certain pre-procedural anxiolytic medications when non-pharmacological support interventions
have been unsuccessful or when the patient has been assessed as having very high anxiety
using a distress assessment tool or clinical judgment. Our anesthesia team has anecdotally
found these medication guidelines to be very useful in clinical practice. The investigators
have not yet studied the use of these medications in our hospital, however, and dissemination
of the practice statement in other settings has been limited. Further evidence of how these
guidelines are used is necessary to support their efficacy and to make recommendations for
updating the BESt Evidence statement.

In addition to the medications outlined in the BESt Evidence Statement (clonazepam,
risperidone, and lorazepam) there are a number of other medications that can contribute to
preoperative anxiolysis including midazolam, diazepam, dexmedetomidine, clonidine, olanzapine
and ketamine. There are case reports and retrospective data on the use of these medications
in patients who would fit the ACT patient criteria, but our team has not come across any
prospective study data that describes the use of these medications for high risk patients in
clinical practice. This study will provide much needed data to give a better understanding of
perioperative experiences and interventions used for ACT patients. This information could
facilitate the development of better defined best practices and help to determine areas for
further research.

Inclusion Criteria:

- Patients who meet the following criteria for the ACT Program:

- Patient is diagnosed with a developmental disability and/or behavioral condition

- Patient has demonstrated inability to cope and cooperate during a healthcare encounter
without additional preparation and support

- Patient scores greater than 7 on the PRAP scale

- Patient has 1 or more of the commonly seen ACT patient diagnoses listed in the
diagnoses list below (additional diagnoses may be added the discretion of the
principal investigator)

- Patients accompanied to the appointment by parents or legal guardian

- Patients of any gender, race, and ethnicity are potentially eligible for inclusion

- Patients who are scheduled as outpatients or for 23 hour observation

- Patient is ambulatory (able to walk and can use all 4 extremities for activities of
daily living)

Diagnoses list:

- Autism Spectrum Disorder, Autism, Autistic

- Delay in Development, Unspecified delay in development, Developmental Delay,
Unspecified intellectual disability

- Down's Syndrome, Trisomy 21

- Other developmental speech or language disorder

- Other specific developmental learning difficulties

- Problems in communication

- Mental and behavioral problems

- ADD/ADHD

- Impulse control disorder

- Anxiety disorder

- Disruptive behavior disorder

- Intermittent explosive disorder

- Obsessive Compulsive Disorder

- Oppositional defiant disorder

- Sensory Integration Disorder

- Pervasive Development Disorder

- Receptive Expressive Language Disorder

Exclusion Criteria:

- Guardian unable to provide consent

- Wheel chair bound

- Prior enrollment in this research study

- Patients who are scheduled to be admitted (greater than 23 hours) and inpatients

- Patients who do not meet the ACT criteria

- Any patient who, in the judgment of the investigators, has insufficient data to
complete analysis

- Adult patients (age 18-21) who have cognitive delays but are their own legal guardian