Addressing Barriers to the Ponseti Method of Clubfoot Treatment in GuatemalaDeveloping an Educational Solution

By Rhonda EndecottMHIRT Intern Summer 2010

Project OverviewAt 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

What do these people have in common?

Mia Hamm

Kristi Yamaguchi

Troy Aikman

Young Bangladeshi girl

Clubfoot

What is Clubfoot?Talipes Equinovarus: the most

common birth deformity of the lower limbs1

◦ Occurs, on average, 1.1 in every 1000 live births2

The foot is turned inward and downward3

◦ One or both feet affected3

◦ Presents en utero at week 16-18 of the pregnancy4

Cause? ◦ Most cases are Idiopathic (the cause

is unknown)3

◦ Genetics play a role in some cases5

SIGNIFICANCE

Every 3 minutes a child with clubfoot is

born.

Incidence in the Developing World6

The Cost

Child◦ Abortion7 or abandonment8,9

◦ Physical disability3

◦ Social stigma Marginalization4,6

◦ Limited future prospects… Education, Jobs, and Marriage10

Family/Community: high financial burden4,6

Results of Treatment:

Without Treatment

Operations

Ponseti Method

The Ponseti Method of Clubfoot Treatment11

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

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.

Goal 3 Implement a public awareness poster campaign on clubfoot and the non-invasive Ponseti method of treatment.

Summer 2010… target audiences were provided with the following developed education and awareness materials.

Caregiver Education Module

Healthcare Provider Tri-fold

Awareness Poster

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.

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.

Healthcare Provider Tri-foldPresentation 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.

Lessons LearnedFor 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.

Future DirectionRevise 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).

At the Hospital…

Off the Clock…

Special Thanks to…Project Advisors

and Site Preceptors

Medical staff at each hospital

MHIRT staffHost families

References1. 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.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

8. China Abandoned and Orphaned Children. (2010). Retrieved from: 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

11. Staheli L, ed. (2003). Clubfoot: Ponseti Management. Seattle: Global-HELP Publications. Retrieved from: 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