Adaptive Care in the Perioperative Setting
Adaptive Care in the Perioperative Setting
The overall purpose for conducting this research is to improve the safety and efficacy of
 care for perioperative patients who have developmental delays and behavioral challenges. The
 specific objectives for this study are to describe distress behaviors and interventions used
 in the ACT population. The investigators will also determine the relationship between a
 predictive measure of distress (the Psychosocial Risk Assessment in Pediatrics score) with
 the actual distress behaviors exhibited by patients in the perioperative area. This study
 will provide knowledge that is necessary in order to develop best practices and to guide
 future research for this patient population. Further understanding the techniques used to
 improve care in the perioperative setting may also provide useful information to consider in
 other healthcare settings where this patient population has difficulty with coping and
 cooperating (ex. vaccinations, placing IVs, dental work, etc.).
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