1. Addressing Barriers to the Ponseti Method of Clubfoot Treatment in Guatemala Developing an Educational Solution By Rhonda Endecott MHIRT Intern Summer 2010

2. Project Overview At Home… ◦ Project Advisors: Dr. Jose Morcuende and Dr. Laurence Fuortes On Location… ◦ Quetzaltenango, Guatemala  2 Wks at San Juan de Dios Hospital  Preceptor: Dr. Jorge Escalante ◦ Guatemala City, Guatemala  8 Wks at IGSS Hospital  Preceptor: Dr. Ana Zambrano

3. What do these people have in common? Mia Hamm Kristi Yamaguchi Troy Aikman Young Bangladeshi girl Clubfoot

4. What is Clubfoot? Talipes Equinovarus: the most common birth deformity of the lower limbs 1 ◦ Occurs, on average, 1.1 in every 1000 live births 2 The foot is turned inward and downward 3 ◦ One or both feet affected 3 ◦ Presents en utero at week 16-18 of the pregnancy 4 Cause? ◦ Most cases are Idiopathic (the cause is unknown) 3 ◦ Genetics play a role in some cases 5

5. SIGNIFICANCE Every 3 minutes a child with clubfoot is born.

6. Incidence in the Developing World 6

7. The Cost Child ◦ Abortion 7 or abandonment 8,9 ◦ Physical disability 3 ◦ Social stigma  Marginalization 4,6 ◦ Limited future prospects…  Education, Jobs, and Marriage 10 Family/Community: high financial burden 4,6

8. Results of Treatment: Without Treatment Operations Ponseti Method

9. The Ponseti Method of Clubfoot Treatment11 The Ponseti Method of Clubfoot Treatment 11

10. The Problem… 1 to 8 clubfoot cases per 1000 live births 450 Guatemalan children born with clubfoot yearly (minimum) Untreated clubfoot poses significant disability Traditional surgical treatments are… High Cost  unattainable for many Low success rate  undesirable for nearly ALL Gold Standard: Ponseti Method Over 90% success rate Non-invasive Collaboration with caregivers is key to success Poor compliance in bracing is the most common cause for relapse. When given additional support, including educational materials, they were more likely to comply with the treatment. 15

11. The Project… Goal 1 Enhance the educational support materials available to caregivers of children with clubfoot undergoing the Ponseti method of treatment. Goal 2 Enhance the educational materials available to referral and treatment healthcare providers on clubfoot and the non-invasive Ponseti method of treatment.

12. Summer 2010… target audiences were provided with the following developed education and awareness materials. Caregiver Education Module Healthcare Provider Tri-fold Awareness Poster

13. For 10 Weeks at 2 Clinics… Caregivers were… ◦ Walked through the information step-by-step. ◦ Given Q & A time. ◦ Provided with a hardcopy to take home.

14. Caregiver Education Module They were encouraged to share the information with the child’s other caregivers. They were informally asked about... Any commentary on the materials. Their treatment compliance. Their self-efficacy regarding sharing treatment information.

15. Healthcare Provider Tri-fold Presentation on clubfoot and the Ponseti method ◦ Given to the heads of nursing department at IGSS. ◦ Informational Tri-folds handed out Copies given to preceptors and posted at each clinic ◦ Also including San Juan de Dios at the capital. Awareness Posters Both: Dr. Ana Zambrano distributed copies at her presentation to local pediatric doctors.

16. Lessons Learned For proper referral…  A list of treatment sites and/or providers needs to be included the tri-fold and posters. For better understanding in a low literacy setting…  Even more of the text in the caregiver information could be pictorially represented. For greater tailoring…  Pictures in the materials could be altered to those in traditional dress, and text to include local jargon.

17. Future Direction Revise the materials to tailor to this population. OR Keep it general enough to implement on a broad scope. Increase accessibility to scientific literature on the topic to help build clinician advocates. Move the poster campaign beyond the clinic setting and into the community. Give the healthcare provider information out to a broader range of professionals (including midwives).

18. At the Hospital…

19. Off the Clock…

20. Special Thanks to… Project Advisors and Site Preceptors Medical staff at each hospital MHIRT staff Host families

21. References 1. Kromber, J., Jenkins, T., (1982) Common Birth Defects in South African Blacks. South African Medical Journal 16;62 (17) 599-602. 2. Barker, S., Chesney, D., Miedzynbrodzka, Z., Mafulli, N., (2003) Genetics and Epidemiology of Idiopathic Congential Talipes Equinovarus. Journal of Pediatric Orthopedics 23:265-227. 3. Ponseti I., Congenital Clubfoot: Fundamentals of Treatment (1996) Oxford University Press Inc., New York. 4. Pirani, S., Naddumba, E., Mathias, R., Konde-Lule, J., Norgrove, P. J., Beyeza, T., et al. (2009). Towards Effective Ponseti Clubfoot Care: The Uganda Sustainable Clubfoot Care Project. Clinical Orthopaedics and Related Research, 467 (5), 1154-1163. 5. Deitz, F., (2002). The Genetics of Idiopathic Clubfoot. Clinical Orthopaedics & Related Research. 401:39-48. 6. E.A. Mayo, A. J. (2007). Creating a Countrywide Program Model for Implementation of a Ponseti Method Clubfoot Treatment Program in Developing Countries. Retrieved from CURE International: http://www.helpcurenow.org/atf/cf/%7BB2D46E45-F4A9-4FA7-A241- DBFC8297818A%7D/ccw-creating_a_countrywide_program_model.pdfhttp://www.helpcurenow.org/atf/cf/%7BB2D46E45-F4A9-4FA7-A241- DBFC8297818A%7D/ccw-creating_a_countrywide_program_model.pdf 7. Barnes, E. (2008). MP bids to outlaw abortions for clubfoot or cleft palate. Retrieved from: http://news.scotsman.com/abortion/MP-bids-to-outlaw-abortions.4260541.jp http://news.scotsman.com/abortion/MP-bids-to-outlaw-abortions.4260541.jp 8. China Abandoned and Orphaned Children. (2010). Retrieved from: http://www.jubileeaction.co.uk/projects_china_abandoned_and_orphaned_children http://www.jubileeaction.co.uk/projects_china_abandoned_and_orphaned_children 9. Lohan, I. (2009) Treatment of Congenital Clubfoot Using the Ponseti Method: Workshop Manual. Retrieved from Global-Help: http://www.global-help.org/publications/books/help_clubfoottreatmentmanual.pdf 10. USAID: Facts on the Disabled in Africa and the Developing World (2007). Retrieved from USAID: http://www.usaid.gov/locations/sub-saharan_africa/features/disabilities.html http://www.usaid.gov/locations/sub-saharan_africa/features/disabilities.html 11. Staheli L, ed. (2003). Clubfoot: Ponseti Management. Seattle: Global-HELP Publications. Retrieved from: http://www.global- help.org/publications/ponseti-cf.html.http://www.global- help.org/publications/ponseti-cf.html 12. Laaveg SJ, Ponseti IV. Long-term results of treatment of congenital club foot. J Bone Joint Surg Am. 1980;62:23-31. 13. Dobbs MB, Nunley R, Schoenecker PL. (2006). Long-term follow-up of patients with clubfeet treated with extensive soft-tissue release. J Bone Joint Surg Am. (88). 986-96. 14. Scher, David M. (2006) The Ponseti Method for Treatment of Congenital Clubfoot, Current Opinion in Pediatrics, 18(1):22-25, 15. McElroy T, Konde-Lule J, Neema S, Gitta S; Uganda Sustainable Clubfoot Care (2007) Understanding the barriers to clubfoot treatment adherence in Uganda: a rapid ethnographic study. Disabil Rehabil 29: 845-855