Scheduling Clinic Visits for Assessments
Chapter 4
CLINIC VISITS FOR ASSESSMENTS
4.1 Clinic Visits
Participants may be scheduled for one or two clinical visits in order to obtain the developmental and neurological exams. Each visit may last up to 3 hours depending on the child. Visits should be scheduled early enough so that if necessary the child can be rescheduled and still remains in the window of 24 months +/- 2 months. It is recommended that all examinations be completed within one visit unless the child becomes ill or otherwise can not complete the testing. Visits must be completed by 26 months adjusted age.
4.2 Visit Schedule
Follow-up assessments should be scheduled between 22 and 26 months adjusted age. Date scheduling windows are listed on the MOTORkids Recruitment Report, sent every other month to the clinical sites.
High risk MOTORkids may already be scheduled in the follow-up clinic as part of their routine care. For those high risk children efforts should be made so that earlier follow up appointments, not part of MOTORkids, are completed so that the MOTORkids appointment will fall within the 22-26 month window. This will be important for the Bayley III assessment as it can only be performed every 6 months and remain valid. All children should be scheduled so that if one appointment is missed another appointment may be made, and the child is seen between 22-26 months.
Attempts should be made to complete the data collection during one clinical visit. However, if a child becomes ill or it is impossible to complete the testing in one visit, a second clinic visit may be necessary. If a second clinic visit is necessary, try and schedule the second visit such that the assessments continue within the permitted window of adjusted age (i.e. 22-26 months adjusted age), when not possible, the assessment should be completed ASAP. If a particular exam is completed over two visits, this is documented in the Participants Record of Follow-up Form (RFF), please include comments that would allow easy identification of which parts of an assessment’s data are from the 1st and which from the 2nd clinic visit.
4.2.1 Rescheduling a missed appointment
Frequently a family will miss a scheduled visit. Another visit should be scheduled as soon as possible. In some cases the child may miss several appointments. However, all visits must occur before the child is 26 months old (adjusted age). After 26 months, adjusted age, the child is no longer eligible to participate in the study.
4.3 FLOW OF THE ASSESSMENT VISIT
Prior to any data collection during the assessment visit, informed consent must have been already completed (refer to Chapter 3: Tracking and Consent).
4.3.1 General Considerations:
To help facilitate a smooth clinic visit, the MOTORkids nurse should update the Medical History Form (MED) via chart review prior to the scheduled visit. For those children not seen at your facility since birth, many of the questions on the MED form will need to be answered upon arrival to the clinic visit. Therefore, the remaining information for the medical history should be completed with parental input upon arrival to the clinic. All information should be verified for accuracy, including that obtained from the medical record.
Each caregiver's time is valuable. The length of the visit should be kept to a minimum without a sense of being rushed. This visit may be done in conjunction with another clinical visit depending on the site. Arrange to have an interpreter present if needed. Confirm that the interpreter is qualified to interpret for your site and is oriented to your clinic, including the MOTORkids protocol.
4.3.2 Reception at the Visit
Once the family arrives, they should be greeted by a member of the MOTORkids staff and accompanied to the exam area. Update all contact information. The nurse, physician or neuroexaminer should briefly review the child’s medical history since birth, and complete the medical history (MED). This will alert the follow-up clinicians of any severe impairment that would affect the child's Bayley Scales of Infant Development III (BSID III) examination. Blindness, severe hearing impairment, and/or a diagnosis of cerebral palsy affecting both upper extremities should be shared with the BSID-III and neurological examiner before the assessments.
At the beginning of the clinic visit, families should also be advised of the components of the visit, and what to expect during the visit.
4.4.3 Ordering of the Assessments
It is preferable for the BSID-III examiner see the child first in an attempt to assess him/her during a time of rest and contentment. However, consideration should also be given to moving the visit along. It may be that the neuroexaminer sees the child first at some of the sites followed by the BSID-III examiner. There is a degree of flexibility.
The BSID-III examiner will administer the Bayley Scales of Infant Development-Third Edition; to children with or without impairment as detailed in the BDID III certification. This is followed by the Behavior Observation Inventory and the Modified Checklist for Autism in Toddlers Instrument (M-CHAT). Note: The M-CHAT can be completed at the end of the assessments to accommodate the neurologic exam if necessary. Data is recorded on the Summary Scores Form (SUM). For consistency, we would like this to be completed by the mother, unless the mother is not the primary caregiver. Summary scores for the BSID can be completed and recorded onto the SUM when the remaining assessments are being made.
The neuroexaminer performs the standardized neurological examination and completes the Neurologic Exam Form (NEU) after the exam is complete.
The neuroexaminer or nurse will then obtain measurements of weight, length, and head circumference, which completes the data collection on the Medical History Form (MED).
The research nurse, social worker, or another appropriate professional, interviews the mother (or other primary caregiver) collecting demographic data onto the Social Factors Form (SES). If the MCHAT has not been completed then it should be completed at this time and recorded onto the MCHAT form (MCF).
Refer to the appropriate MOP Chapters for detailed information and instruction regarding specific data collection.
4.4 Interpreting results to the family
Based on scores on these measures, the MOTORkids staff may suspect that the child has a developmental problem or delay necessitating referral for developmental intervention services. If the MOTORkids assessment suggests that the child is developmentally delayed, it is recommended that the staff ask whether referrals have been made for the child to receive developmental interventions, such as physical or occupational therapy.
Many infants will already be receiving appropriate early childhood intervention services (ECIS) intervention. If MOTORkids follow up staff are experienced in the interpretation of findings from the Bayley Scales of Infant Development-Third Edition or discussing behavioral abnormalities, then it is appropriate for the MOTORkids follow up staff to discuss the findings from the BSID-III or the screening assessment for autism with the family. If not, the family should be asked if they would like the information shared with their PCP or an ECIS provider who is involved in the care of the child.
4.5 Concluding the Assessment
Once the assessments are complete, the MOTORkids Follow-up Coordinator should meet with the family to ascertain if they have any other concerns or questions arising from the visit. If the caregiver and/or MOTORkids follow-up staff have concerns which would necessitate a more intensive evaluation, the summary scores from the 24 month visit can be forwarded to other providers with the parent's signed consent. A Release of Information would then be completed.
Once the assessments are completed and the results are relayed to the family, the family should be compensated for their travel and an age appropriate toy or book is given to the child. Contact information for the MOTORkids nurse or tracker should be given to the family in case questions arise after the visit and/or they need assistance for referrals made for the child. The family should be thanked for their time and participation in MOTORkids.
4.6 Participant Record of Follow-up (RFF)
The Participant Record of Follow-up (RFF) form is an administrative form that documents the completion of data collection on each participant. This form is data entered into the MOTOR DMS, and will provide information regarding number of follow-up clinic visits, their length of time, and the data collected at each visit.
CHAPTER 4: Clinic Visits for Assessments 1/24/07 Page 4 - 1