1. Developmental Dysplasia Hip (DDH) Parent satisfaction survey Presented by Heather Jennings W.I.T. Supervisors: Dr. Martina Gooney and Dr. Linda Sheahan

2. Introduction 2 phase study Phase 1 – database of clinics Phase 2 – Survey of parents attending clinic from December 2014 – February 2015 (n=100).  Parent satisfaction survey.

3. DDH Common problem in Ireland (figures uncertain) May result in the need for major hip surgery in young children Untreated dysplasia common cause of early adult osteoarthritis PROBLEMS PREVENTABLE BY EARLY INTERVENTION!

4. Neonatal Hip Instability 6 -7 per 1000 live births? Won’t detect dysplasia without instability

5. Aim and objectives To explore the experiences of parents of infants with DDH and identify their needs to develop appropriate care packages for service improvements. To identify scope for change in DDH management and treatment.

6. Study Method Parents/caregivers of infants with DDH completed a questionnaire in relation to their experiences of a dedicated DDH clinic and caring for a child with DDH. SPSS 21.0 software package was used for data entry and statistical analysis. Ethical approval was granted from the local Regional Ethics Committee (May 2014)

7. Findings Gender  Female (n=80)  Male (n=20) Age at diagnosis Number% Birth to 6 weeks5050% 7 to 13 weeks1515% 14 to 20 weeks33% More than 21 weeks3030%

8. Referral to clinic Person who referred to clinic Percent Paediatrician74% Midwife4% General Practitioner 8% Public Health Nurse 12% Radiologist2% Total100%

9. Reason for referral Percent Dysplasia 26% Family history 22% Dislocation 13% Breech 10% Click hip 10% Creases 3% Limb abduction 3% Immaturity 1% Unstable hip 1% Paediatric referral 1% Not recorded 10% Total100%

10. Diagnosis Hip ultrasound Hip x – ray after 6 months

11. Type of treatment Percent Harness48% Boston Brace24% Observation12% Harness and brace 5% Surgery 1% Total100%

13. Pavlik harness

14. Boston Brace Boston Abduction Brace

15. Time to first appointment Percent 1 – 5 weeks66% 6 – 10 weeks20% 11 – 15 weeks2% 16 – 20 weeks2% 21 weeks plus4% Not recorded4% Total100%

16. Waiting times for appointment Waiting time lasting up to 30 minutes = 42% Waiting time lasting more than 30 minutes = 58% 89% of those who completed the questionnaire were very satisfied with this waiting time.

17. Satisfaction level of Appointment 98% of those who completed the questionnaire were very satisfied with explanations given and that questions were answered appropriately. Education with parents at DDH clinic

18. Main concerns of parents Upset when told of baby’s diagnosis (n=69; 73%) Worry about the comfort of my baby (n=65; 73%) Looking at my baby in a harness(n=49; 55%) Difficult to wash my baby(n=45; 51%)

19. Cont… Worry before each hospital visit (n=49; 55%) The effect of hip instability for the future (n=61; 69%) Worry about my baby walking (n=49; 56%)

20. Parents satisfied with Changing the baby’s nappy Dressing the baby Feeding the baby Cuddling the baby Playing with the baby Managing the harness

21. Conclusion This study will : Provide valuable data regarding the effectiveness of the DDH clinic and an in-depth understanding of the opinions of those whose babies are being screened and treated for DDH. Allow service users an opportunity to articulate their views on service provision within the DDH setting in the South of Ireland. Provide a basis for an evaluation of current treatment and services provision in Ireland.

22. Questions ?