Optimizing Functional Independence in Children and Adults with Myelomeningocele at Las Obras

UNC PT OUTREACH

Optimizing Functional Independence in Children and Adults with Myelomeningocele

I am eager to combine my interest for serving abroad and my passion for pediatric physical therapy during the UNC PT Outreach Service Learning Trip to Guatemala this spring!  UNC PT Outreach aims to meet the needs of underserved populations of Guatemala, while increasing cultural competence among future physical therapists.¹ This year, a team of 13 students, 2 UNC PT faculty members, and 6 practicing therapists will travel to Guatemala to provide educational presentations, as well as work along side Guatemalan physical therapists to treat pediatric and adult patients in a hospital, school, and rural clinic.

 

Las Obras Sociales del Santo Hermano Pedro (Las Obras) is a private Catholic hospital that runs on donations and 20% funding from the government.² Las Obras employs approximately 300 individuals and provides health care to more than 230 adult and pediatric patients.² The physical therapists at Las Obras have requested more information about myelomeningocele (MMC) and the management of MMC throughout the lifespan.  It is my intent to provide an educational, interactive presentation to the physical therapists and PT students at Las Obras on the treatment and management of MMC, as well as strategies for determining ambulatory potential for individuals with MMC.

 

In preparation for my Capstone project, I performed a thorough review of the current literature and compiled two evidence tables.  Evidence Table 1  explored the benefits of functional skills training versus focused strengthening exercise for increasing functional independence in children with MMC, and for Evidence Table 2, I examined the literature for methods of predicting ambulatory prognosis in young children with MMC.  The literature suggests that both focused strengthening and functional skills training may improve functional mobility, and participation in physical activity may also lead to improved self-esteem and quality of life.^3,4,5,6,7,8 As for prognosis, associations were found between independence in mobility and lower lesions levels, lack of contractures, lower extremity strength, mental status, having two or less shunt revisions, lack of spine deformity, and good hand function.^{9,10,11,12,13,14,15} The conclusions drawn from the literature formed the basis for my presentation materials.

 

I also completed a Health Literacy Assessment to determine the factors that I will need to take into consideration when presenting educational materials to Spanish speakers with a educational and health care system different than our own.  With the guidance of my Capstone advisor and committee members, I developed a PowerPoint presentation (English/Spanish), and handouts titled: “Spina Bifida: Should I Expect this Child to Walk?” (English/Spanish) , “Spina Bifida: Stretching Exercises to Prevent Contractures” (English/Spanish), “Spina Bifida: Strengthening Exercises for Young Children” (English/Spanish), and “Spina Bifida: Strengthening Exercises for Adolescents & Adults” (English/Spanish). All handouts have been translated to Spanish, and the actual verbal presentation will take place with the assistance of a translator.  My presentation, including lecture, demonstration, and hands-on application, will take place between April 24-29 in the PT gym at Las Obras.  I have modified a previous student’s presentation evaluation form, to be completed by audience members at the end of the presentation to assess the introduction, explanation, organization, quality of content, relevance and clarity of my materials and presentation.  The audience will also have the opportunity to offer comments and feedback on ways to improve my presentation and what topics they would like to learn about in the future.  Feedback gathered from the evaluation forms will be shared after the conclusion of the service-learning trip.

 

I would like to extend my deepest gratitude to my Capstone advisor, Katie Ollendick, and my committee members, Cathy Howes and Melissa Scales, for their invaluable guidance and feedback throughout this experience! Also, a big “thank you” to CJ Jacobs, Derrick O’Neal, and Dr. Sadye Paez Errickson for translating my presentation materials.  I couldn’t have done it without you all!

 

The summary of my evaluation results can be found here.

 

References:

¹ Department of Allied Health Sciences: Physical Therapy. UNC PT Outreach 2012.  Available at:  http://www.med.unc.edu/ahs/physical/news/unc-pt-outreach-2012.  Accessed April 11, 2014.

² Edwards N, Errickson S. Introduction to Health and Disability in Guatemala. [PowerPoint]. Chapel Hill, NC: UNC Physical Therapy Program; 2013.

³ de Groot JF, Takken T, van Brussel M, et al. Randomized controlled study of home-based treadmill training for ambulatory children with spina bifida. Neurorehabilitation and Neural Repair. 2011; 25(7): 597-606.

⁴ Andrade CK, Kramer J, Garber M, Longmuir P. Changes in self-concept, cardiovascular endurance and muscular strength of children with spina bifida aged 8 to 13 years in response to a 10-week physical activity programme: a pilot study. Child Care Health Dev. 1991; 17(3): 183-96.

⁵ O’Connell DG, Barnhart R. Improvement in wheelchair propulsion in pediatric wheelchair users through resistance training: a pilot study. Arch Phys Med Rehabil. 1995; 76: 368-372.

⁶ Winchester P, Kendall K, Peters H, et al. The effect of therapeutic horseback riding on gross motor function and gait speed in children who are developmentally delayed. Phys Occup Ther Pediatr. 2002; 22(3-4): 37-50.

⁷ Fragala-Pinkham M, Haley SM, O’Neil ME. Group aquatic aerobic exercise for children with disabilities. Dev Med Child Neurol. 2008; 50(11): 822-7.

⁸ Liusuwan RA, Widman LM, Abresch RT, et al. Behavioral intervention, exercise, and nutrition education to improve health and fitness (BENEfit) in adolescents with mobility impairment due to spinal cord dysfunction. J Spinal Cord Med. 2007; 30(1): S119-26.

⁹ Schoenmakers MA, Uiterwaal CS, Gulmans VA, et al. Determinants of functional independence and quality of life in children with spina bifida. Clin Rehabil. 2005; 19(6): 677-685.

¹⁰ Diaz Llopis I, Bea Munoz M, Martinez Agullo E, et al. Ambulation in patients with myelomeningocele: a study of 1500 patients.  Paraplegia. 1993; 31(1): 28-32.

¹¹ Bartonek A, Saraste H. Factors influencing ambulation in myelomeningocele: a cross-sectional study. Developmental Medicine & Child Neurology. 2001; 43: 253-260.

¹² Bartonek A. Motor development toward ambulation in preschool children with myelomeningocele—a prospective study.  Pediatric Physical Therapy. 2010; 22: 52-60.

¹³ Danielsson AJ, Bartonek A, Levey E, et al. Associations between orthopaedic findings, ambulation and health-related quality of life in children with myelomeningocele.  J Child Orthop. 2008; 2: 45-54.

¹⁴ Oakeshott P, Hunt GM, Poulton A, Reid F. Open spina bifida:  birth findings predict long-term outcome.  Arch Dis Child. 2012; 97: 474-476.

¹⁵ Norrlin S, Strinnholm M, Carlsson M, Dahl M. Factors of significance for mobility in children with myelomeningocele.  Acta Paediatr. 2003; 92: 204-210.