1. Listening to Parents’ Voices: What Can We Learn? Lynn Bilardello (Mother of Sienna & Celsa) & Susan R. Harris School of Rehabilitation Sciences-UBC

2. 2 INTRODUCTIONS Susan introduces Lynn Lynn introduces Susan Audience introductions

3. 3 Background: Literature Review Infants born preterm or LBWInfants born preterm or LBW (Bricker et al, 1988; Dewey et al, 2000; Eisert, 1980; Harris, 1994; Heiser et al, 2000; Hussey-Gardner et al, 1998; Pritchard et al, 2005; Rogers et al, 1992) Infants with prenatal drug/alcohol exposureInfants with prenatal drug/alcohol exposure (Harris, 1994) Children with ADHD autism parental assessment of child’s cognitive and speech/language abilitiesChildren with ADHD (Mulhern et al, 1994), autism (De Giacomo & Fonbonne, 1998); parental assessment of child’s cognitive and speech/language abilities (Johnson et al, 2004; Oliver et al, 2002; Saudino et al, 1998)

4. 4 Background: Literature Review Dr. Frances Page Glascoe - Vanderbilt Univ. 1985 - developmental & referral practices of Tennessee physicians More than 40 articles or letters related to developmental screening About half relate to confirming the value of parental evaluation of their children’s developmental status

5. 5 Background: Literature Review Contradictory Findings: Parents’ medical history of 92 children age <6 years on wait list to receive PT or OT (who had been referred for neuromotor concerns)Parents’ medical history of 92 children age <6 years on wait list to receive PT or OT (who had been referred for neuromotor concerns) Parents were concerned about their child’s development 8.2 months later than their children’s physicians (Ehrmann Feldman et al, 2005)Parents were concerned about their child’s development 8.2 months later than their children’s physicians (Ehrmann Feldman et al, 2005)

6. 6 Evidence-based Medicine EBM is the integration of: best research evidence with clinical practice and patient values (Sackett et al. 2000)

7. 7 Best Research Evidence Clinically relevant research... Especially from patient-centered clinical research into the accuracy and precision of diagnostic tests, the power of prognostic markers, and the efficacy and safety of therapeutic, rehabilitative and preventive regimens

8. 8 Clinical Expertise The ability to use our clinical skills and past experience to rapidly identify each patient’s unique health state and diagnosis, their individual risks and benefits of potential interventions, and their personal values and expectations

9. 9 Patient Values The unique preferences, concerns and expectations each patient (or parent) brings to a clinical encounter and which must be integrated into clinical decisions

10. 10 One Example of EBP Clinically relevant research, family-centered, aimed at accuracy & precision of a diagnostic test Research question based on clinical experience/expertise Patient (family) values, i.e. family expectations/concerns part of the clinical encounter & integrated into clinical decisions

11. 11 Developing the Research Question NICU Follow-up Program: University of Washington Question asked to parents: “How do you think your baby is doing?” baby is doing?”

12. 12 Research Question How accurate are parents/caregivers in determining if their at-risk infant is developing on target or is delayed?

13. 13 Family-Centered Diagnosis Participants: 31 high-risk infants from 3-9 months of age Parent/Caregiver Question: Harris Infant Neuromotor Test (HINT) Compared with other babies the same age, my baby is: a) ahead of schedule b) right on target c) slightly delayed d) very delayed

14. 14 Family-Centered Diagnosis Compared parents’ level of concern on the HINT with scores on a norm-referenced test of infant motor development (Bayley): Sensitivity = 80% Specificity = 91%

15. 15 Ongoing HINT Research The CHILD Project - Infant Neuromotor Study 140 infants (82 at-risk, 58 not-at-risk) Assessed on the HINT, AIMS and ASQ at 4- 6 months and 10-12 months Assessed on Bayley-II at 24 months and Bayley-III at 36 months

16. 16 Personalizing this Line of Research with One Family’s Story Sienna’s Early Story: Birth to 9 1/2 Months

17. 17 Sienna’s Early Story & Lynn’s Concerns Pregnancy history Birth history (birth weight, gestational age, concerns at birth) Developmental history: birth to 9 1/2 months Concerns of other family members? Comparisons to older sister Physicians’ impressions (GP and pediatrician)

18. 18 Developmental Assessment: 09/06 Growth: weight = 60 th %; length = 10 th %; head circumference = 75 th % Physical features: almond-shaped eyes, prominent eyelashes, long philtrum, thin upper lip, clinodactyly of 5th digits; wide space between upper front teeth Gross motor skills: independent sitting, pivots in prone, rolls supine to prone and reverse

19. 19 Developmental Assessment: 09/06 Fine motor skills: Hands to midline, reached and obtained toys unilaterally in supine and sitting Muscle tone: Moved easily in anti-gravity postures, e.g., grasped toes while in supine lying, sat independently with straight back; no initial impression of generalized hypotonia NEXT:Show DVD of assessment! NEXT: Show DVD of assessment!

20. 20 Developmental Assessment: 09/06 INITIAL IMPRESSION: Unusual facial features, small for age, likely mild motor delays based on my overall clinical impression STANDARDIZED TESTS ADMINISTERED: Bayley-II Motor Scale and HINT

21. 21 Standardized Test Results Bayley-II Motor Scale: PDI MeanSDScore 1001556 (-2.9 SD)* *Significantly delayed motor performance HINT Total Score Mean: 6.61SD: 3.8715 (+2.16 SD)* *Higher HINT score = greater risk

22. 22 Steps That Followed the Assessment Report of developmental assessment written by SH and sent to Lynn for distribution to Sienna’s physicians Follow-up tests (blood/genetic tests = all WNL) and referral to a medical geneticist at BCCH No conclusive findings; return at age 2 years (December 2007)

23. 23 Sienna & Celsa in December/06

24. 24 Aunt Kellie & Sienna - Feb/07

25. 25 Sienna Today at 18 Months Overall motor development milestones Speech & language milestones Involvement in IDP play group Overall health and growth Personality plus!!! How is Lynn feeling today about Sienna?

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28. What Professionals Need to Know When a Parent is Concerned Listen to parents/caregivers when they have concerns about their infants’ development! Parents are often right and must have their concerns validated by pediatric health care and early childhood professionals.

29. 29 Thank You for Listening!

30. 30 Questions & Comments?

31. 31