Developmental Evaluation Survey for CPRN Sites Institution/Site Name * AI duPont Nemours Hospital for ChildrenAkron Children's HospitalBoston Children's HospitalChildren's Hospital ColoradoChildren's Hospital of PhiladelphiaChildren's Mercy HospitalChildren's of AlabamaCincinnati Children's HospitalColumbia University Weinberg CenterCook Children's HospitalGillette Children'sJohns HopkinsKennedy Krieger InstituteLe Bonheur Children's / CampbellLurie Children's Hospital of ChicagoMayo ClinicMt. Washington Pediatric HospitalNationwide Children's HospitalPhoenix Children's HospitalRiley Hospital for ChildrenSeattle Children's HospitalShirley Ryan Ability LabSt. Louis Children's HospitalTexas Children's HospitalUCSD / Rady Children's HospitalUniversity of California – San Francisco (UCSF)University of IowaUniversity of Michigan Medical CenterUniversity of OklahomaUniversity of Utah / Primary Children'sUniversity of VirginiaUniversity of Wisconsin – MadisonUT Health – HoustonValley Children's HealthcareOther Institution/Site Name NICU Follow-up, CP Early Detection, and Preschool Children (through age 4) Does your program have a NICU Follow up Clinic/program? No, and neurodevelopmental assessments are not common practice for children with CP age 0-4years. (proceed to School Age Child section) We do not have a NICU follow up or Early detection program, but neurodevelopmental assessments are clinical common practice so we will share our experience. Yes. Complete questions below Who is the representative that can complete the following section (please include: name, role, email) Does the NICU follow up (or another clinical program) implement the CP Early Detection program (https://www.aacpdm.org/publications/care-pathways/early-detection-of-cerebral-palsy) including GMA and HINE? Yes No I don’t know Are children who complete the CP Early Detection Program recommended to have cognitive developmental assessments? If so, please report what tools and ages are recommended: Bailey Scales of Infant Development IV (BSIID-IV): 0-5m 6-11m 12-23m 24-35m 36-42m Bailey Scales of Infant Development IV Low Motor/Low Vision (BSIID-IV LM/LVi): 0-5m 6-11m 12-23m 24-35m 36-42m Developmental Assessment of Young Children-2 (DAYC-2): 0-5m 6-11m 12-23m 24-35m 36-47m 48-59m 60-71m Capute Scales (CAT-CLAMS): 0-5m 6-11m 12-23m 24-36m Mullen Scales of Early Learning (MSEL): 0-5m 6-11m 12-23m 24-35m 36-47m 48-59m 60-78m Stanford Binet Intelligence Scales (SB-5): 24-35m 36-47m 48-59m 60-72m Pre-School Learning Scales (PLS): 0-5m 6-11m 12-23m 24-35m 36-47m 48-59m 60-72m Battell Developmental Inventory (BDI): 0-5m 6-11m 12-23m 24-35m 36-47m 48-59m 60-72m Fagan Test of Infant Intelligence (FTII): 3-6m 7-12m Mayes Motor-Free Compilation (MMFC): 0-5m 6-11m 12-24m Peabody Picture Vocabulary Test (PPVT): 30-36m 37-48m 49-60m 61-72m Wechsler Preschool and Primary Scale of Intelligence (WPPSI-IV): 30-36m 37-48m 49-60m 61-72m Other: Who completes the cognitive developmental assessments? Physician Psychologist Therapist OtherOther What is the estimated completion rate of these assessments? <25% 25-50% 51-75% 76-100% What are the inclusion criteria for assessment? What are the exclusion criteria for assessment? What are the barriers, if any, encountered for completion? None No shows/parent engagement Clinical capacity/wait times Reimbursement Other Do children diagnosed with CP before age 5 who were not evaluated with the CP Early Detection Program get referred for the same cognitive evaluations? Yes No I don’t know When do children transition from CP Early Detection Clinic? At CP diagnosis At graduation age OtherOther Graduation age (in months) <6m6m7m8m9m10m11m12m13m14m15m16m17m18m19m20m21m22m23m24m>24m but less than or equal to 30m>30m but less than or equal to 36m>36m but less than or equal to 48m>48m but less than or equal to 60m>60m How are children with CP graduating from the NICU follow up program transitioned? Automatic referral Referral to specialists as needed case by case Transition to PCP who manages referrals Automatic referral to: Neurology Developmental Pediatrics PM&R Orthopedics OtherOther School age Children with CP (age 5-18) Does your institution have a formal developmental assessment plan/recommendation for school age children (age 5-18) with CP? For example, getting psychology testing at specific ages No, and we get evaluations infrequently. No, but we get evaluations frequently and will share our practice. Yes. Who is the representative that can complete the following section (please include: name, role, email) Who does the evaluation: Psychologist Developmental pediatrician Speech therapist Occupational therapist OtherOther What ages are assessments obtained: 0-23m 2-5y 6-8y 9-12y 13-18y Are there CP specific criteria for referral (GMFCS level, vision status, verbal communication abilities, etc)?: Yes No I don’t know Please describe: Are there any exclusion criteria as “not testable”?: Yes No I don’t know If so, which ones: Severe motor impairment involving hand use Nonspeaking Blindness Deafness Behavior disorder Non-english speaking OtherOther How is assessment battery chosen: Standard tools/battery Provider discretion based on patient ability to participate What tools are commonly used or included in the standard assessment: Cognition Stanford-Binet Intelligence Scales Differential Abilities Scale (DAS) Wechsler preschool and Primary Scale of Intelligence (WPPSI) Wechsler Intelligence Scales for Children (WISC) Weschler Adult Intelligence Scales (WAIS) Woodcock-Johnson Test of Cognitive Abilities (Woodcock-Johnson) Kauffman Assessment Battery for Children (KBAC) Kaufman Brief Intelligence Test (KBIT) NIH toolbox Peabody Picture Vocabulary Test (PPVT) Receptive One-Word Picture Vocabulary Test Expressive One-Word Picture Vocabulary Test Ravens Colored Progressive Matrix OtherOther Achievement Wide Range Achievement test (WRAT) Wide Range Assessment of Memory and learning (WRAML) Kaufman Test of Educational Achievement (KTEA) Weschler Individual Achievement test (WIAT) Woodcock-Johnson test of Achievement (WJA) OtherOther Memory Wide Range Assessment of Memory and learning (WRAML) California Verbal Learning Test Rey Complex Figure Test Digit Span Children’s Memory Scale OtherOther VisuoSpatial and VisuoMotor Grooved Pegboard Wide Range Assessment of Visual Motor Ability (WRAVMA) Beery-Buktenica Developmental Test of Visual Perception Beery-Buktenica Developmental Test of Motor Coordination Beery-Buktenica Developmental Test of Visual-motor integration (VMI) OtherOther Executive Function Conners Continue Performance Test NEPSY Test of Everyday Attention for Children (TEA-Ch) Delis-Kaplan Executive Function System (D-KEFS) OtherOther Adaptive Adaptive Behavior Assessment System (ABAS) Vineland Adaptive Behavior Scales (Vineland) Developmental Profile (DP4) OtherOther What are the barriers, if any, encountered for completion? None No shows/parent engagement Clinical capacity/wait times Reimbursement OtherOther Does your institution have a “medical home” or department which manages most school age CP patients or is more involved in care coordination for these patients? No, care is distributed evenly between (select all that apply): PM&R Neurology Orthopedics Developmental Pediatrics OtherOther Yes: PM&R Neurology Orthopedics Developmental Pediatrics OtherOther Who is the representative that can complete the following section (please include: name, role, email) Is it standard (aka part of the note template) to ask about the following concerns or administer screening questionnaires (check all that apply): Developmental Concerns: Communication methods/needs Cognitive/mental maturity Academic functioning Attention concerns Behavioral concerns Mood concerns Variable by provider None OtherOther School services: 504 plan IEP Self-contained vs mainstream classroom setting Personal care services Therapy (PT, OT, ST) Counselling (psychology, support groups, other coping supports) OtherOther Transition planning: Employment plan Advanced education plan Guardianship or other supported decision making Long term caregiving plans Adult physician/medical care plan OtherOther Does your institution have capacity to refer to the following for developmental/behavioral evaluation when needed: Yes, Check all that apply and rate availability No, but we have access to outside providers for (check all that apply and rate availability) Psychiatry Easily available (1-3mo wait) Moderate availability (4-9mo wait) Poor availability (>9mo wait) Psychology or other counselling for coping Easily available (1-3mo wait) Moderate availability (4-9mo wait) Poor availability (>9mo wait) Psychology or Neuropsychology for testing Easily available (1-3mo wait) Moderate availability (4-9mo wait) Poor availability (>9mo wait) Developmental Pediatrics Easily available (1-3mo wait) Moderate availability (4-9mo wait) Poor availability (>9mo wait) We need provider access for (check all that apply): Psychiatry Psychology or other counselling for coping Neuropsychology/psychology for assessment Developmental pediatrics Are you satisfied that your patients’ needs are fully met with the available referral pathways? Yes No I don’t know Do you or your families have any concerns with the number of referrals/visits as a barrier to developmental care? Yes No I don’t know Do school age patients typically receive care through any state-based services? Home and Community Based Services MHMR None OtherOther Do adult patients typically receive care through any state-based services? Home and Community Based Services MHMR None OtherOther If so, are teens referred before transition out of clinic? Yes No I don’t know Adults with CP Does your institution have a “medical home” or department which manages the majority of adult CP patients or is more involved in care coordination for these patients? Adults are not followed in our institution. No, care is distributed evenly. Yes. Patients transition by age: 16yrs17yrs18yrs19yrs20yrs21yrs22yrs23yrs24yrs25yrs>25yrs PM&R Neurology Orthopedics Developmental Pediatrics OtherOther Who is the representative that can complete the following section (please include: name, role, email) Is it standard (aka part of the note template) to ask about the following concerns or administer screening questionnaires (check all that apply): Cognitive Concerns: Academic and/or job functioning concerns Mood concerns Alcohol and Substance use Cognitive decline/dementia OtherOther Access to services: 504 plan or IEP in higher education Access to transportation Interest in and access to employment Barriers to employment Accessible workplace Need for personal care services Therapy (physical, occupational, speech, vocational) Counselling (therapy, psychology, other) Social worker OtherOther Does your institution have capacity to refer to the following for evaluations when needed: Yes, our institution has (check all that apply and rate availability): Not provided within our institution, but we have access to outside providers for (check all that apply and rate availability): Psychiatry: Easily available (1-3mo wait) Moderate availability (4-9mo wait) Poor availability (>9mo wait) Psychology or other counselling for coping: Easily available (1-3mo wait) Moderate availability (4-9mo wait) Poor availability (>9mo wait) Psychology or Neuropsychology for testing: Easily available (1-3mo wait) Moderate availability (4-9mo wait) Poor availability (>9mo wait) Social Work Easily available (1-3mo wait) Moderate availability (4-9mo wait) Poor availability (>9mo wait) We need provider access for (check all that apply): Psychiatry Psychology or other counselling for coping Psychology or Neuropsychology for testing Social Work OtherOther Are you satisfied that your patients’ needs are fully met with the available referral pathways? Yes No I don’t know Do you or your families have any concerns with the number of referrals/visits as a barrier to cognitive behavioral, or mood care? Yes No I don’t know Do adult patients typically receive care through state-based services (Home and Community Based Services, MHMR, other, or none)? Yes No I don’t know Other comments or discussion: Submit Save Draft If you are human, leave this field blank.
