The Development of a Lifetime Care Model in Comprehensive Spina Bifida Care

Overview

Journal J Pediatr Rehabil Med

Publisher Sage Publications

Specialties Pediatrics
Rehabilitation Medicine

Date 2018 Dec 4

PMID 30507593

Citations 13

Authors

Betsy Hopson

Brandon G Rocque

David B Joseph

Danielle Powell

Amie B Jackson McLain

Richard D Davis

Tracey S Wilson

Michael J Conklin

Jeffrey P Blount

Affiliations

Soon will be listed here.

Abstract

Purpose: To describe the development and implementation of the Children's of Alabama (COA) Spina Bifida (SB) Lifetime-Care-Model, including standardized care protocols and transition plan.

Methods: In 2010, members of the pediatric team at COA began to evaluate limitations in access to care for patients with SB at various stages of life. Through clinic surveys, observations, and caregiver report, a Lifetime-Care-Model was developed and implemented. Partnerships were made with adult medicine colleagues to create an interdisciplinary model at each stage. Since developing this program, it has evolved to include standardized care protocols.

Results: Since 2011, there have been 42 prenatal clinics; 114 families received counseling and prenatal care. Of these, 106 have delivered at our center and established care in our pediatric clinic. There are currently 474 patients in the pediatric and 218 in the adult clinics.

Conclusions: Our institutional experience suggests that patients with SB benefit from continuity of care throughout their lifetime. This article describes early failures which led to an evolution in approach and implementation of a Lifetime-Care-Model which results in a smooth transition between all phases of life. We hope that other institutions may adapt and build upon it to create programs unique to their specific patient needs.

Citing Articles

Initial observations of medically complex young adults transitioning to adult care: Revealing data regarding mental health, nutrition, and transition preparedness.

Hooker E, Eckenrode M, Hopson B, Somerville C Health Care Transit. 2024; 1:100005.

PMID: 39712994 PMC: 11657854. DOI: 10.1016/j.hctj.2023.100005.

Evaluation of multidisciplinary high-risk pregnancy clinic for myelomeningocele.

Anderson L, Hopson B, Caudill C, Rocque B, Blount J, Arynchyna-Smith A Childs Nerv Syst. 2024; 40(8):2505-2514.

PMID: 38644383 PMC: 11269498. DOI: 10.1007/s00381-024-06337-4.

2023 updates to the spina bifida transition to adult care guidelines.

Fremion E, Kaufman M, Mukherjee S, Murphy P, Smith K J Pediatr Rehabil Med. 2023; 16(4):583-593.

PMID: 38160373 PMC: 10789338. DOI: 10.3233/PRM-230052.

Impact of Spina Bifida on Sleep Quality: Current Insights.

Gunnett M, Rocque B, Nourani A, Beltran-Ale G Nat Sci Sleep. 2023; 15:967-978.

PMID: 38034043 PMC: 10685378. DOI: 10.2147/NSS.S401269.

What has changed in pediatric neurosurgical care in spina bifida? A 30-year UAB/Children's of Alabama observational overview.

Blount J, Hopson B, Johnston J, Rocque B, Rozzelle C, Oakes J Childs Nerv Syst. 2023; 39(7):1791-1804.

PMID: 37233768 DOI: 10.1007/s00381-023-05938-9.

References

Bowman R, McLone D, Grant J, Tomita T, Ito J . Spina bifida outcome: a 25-year prospective. Pediatr Neurosurg. 2001; 34(3):114-20. DOI: 10.1159/000056005. View

Mahmood D, Dicianno B, Bellin M . Self-management, preventable conditions and assessment of care among young adults with myelomeningocele. Child Care Health Dev. 2011; 37(6):861-5. DOI: 10.1111/j.1365-2214.2011.01299.x. View

Vinchon M, Dhellemmes P . The transition from child to adult in neurosurgery. Adv Tech Stand Neurosurg. 2007; 32:3-24. DOI: 10.1007/978-3-211-47423-5_1. View

Shin M, Besser L, Siffel C, Kucik J, Shaw G, Lu C . Prevalence of spina bifida among children and adolescents in 10 regions in the United States. Pediatrics. 2010; 126(2):274-9. DOI: 10.1542/peds.2009-2084. View

Thibadeau J, Ward E, Soe M, Liu T, Swanson M, Sawin K . Testing the feasibility of a National Spina Bifida Patient Registry. Birth Defects Res A Clin Mol Teratol. 2012; 97(1):36-41. PMC: 4470391. DOI: 10.1002/bdra.23094. View

Rekate H . The pediatric neurosurgical patient: the challenge of growing up. Semin Pediatr Neurol. 2009; 16(1):2-8. DOI: 10.1016/j.spen.2009.03.004. View

Crowley R, Wolfe I, Lock K, McKee M . Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. 2011; 96(6):548-53. DOI: 10.1136/adc.2010.202473. View

Le J, Mukherjee S . Transition to adult care for patients with spina bifida. Phys Med Rehabil Clin N Am. 2014; 26(1):29-38. DOI: 10.1016/j.pmr.2014.09.007. View

Talamonti G, DAliberti G, Collice M . Myelomeningocele: long-term neurosurgical treatment and follow-up in 202 patients. J Neurosurg. 2008; 107(5 Suppl):368-86. DOI: 10.3171/PED-07/11/368. View

10.

. ACOG Committee Opinion No. 651: Menstruation in Girls and Adolescents: Using the Menstrual Cycle as a Vital Sign. Obstet Gynecol. 2015; 126(6):e143-e146. DOI: 10.1097/AOG.0000000000001215. View

11.

Aguilera A, Wood D, Keeley C, James H, Aldana P . Young adults with spina bifida transitioned to a medical home: a survey of medical care in Jacksonville, Florida. J Neurosurg Pediatr. 2015; 17(2):203-207. DOI: 10.3171/2015.7.PEDS14694. View

12.

Piatt Jr J . Treatment of myelomeningocele: a review of outcomes and continuing neurosurgical considerations among adults. J Neurosurg Pediatr. 2010; 6(6):515-25. DOI: 10.3171/2010.9.PEDS10266. View

13.

Wang J, Lai C, Wong T, Liang M, Chen H, Chan R . Health-related quality of life in children and adolescents with spinal dysraphism: results from a Taiwanese sample. Childs Nerv Syst. 2013; 29(9):1671-9. DOI: 10.1007/s00381-013-2117-5. View

14.

. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002; 110(6 Pt 2):1304-6. View

15.

Grimsby G, Burgess R, Culver S, Schlomer B, Jacobs M . Barriers to transition in young adults with neurogenic bladder. J Pediatr Urol. 2016; 12(4):258.e1-5. DOI: 10.1016/j.jpurol.2016.04.015. View

16.

Dupepe E, Hopson B, Johnston J, Rozzelle C, Oakes W, Blount J . Rate of shunt revision as a function of age in patients with shunted hydrocephalus due to myelomeningocele. Neurosurg Focus. 2016; 41(5):E6. PMC: 5460762. DOI: 10.3171/2016.8.FOCUS16257. View

17.

LORBER J . Spina bifida cystica. Results of treatment of 270 consecutive cases with criteria for selection for the future. Arch Dis Child. 1972; 47(256):854-73. PMC: 1648403. DOI: 10.1136/adc.47.256.854. View

18.

Sawin K, Rauen K, Bartelt T, Wilson A, OConnor R, Waring 3rd W . Transitioning adolescents and young adults with spina bifida to adult healthcare: initial findings from a model program. Rehabil Nurs. 2014; 40(1):3-11. DOI: 10.1002/rnj.140. View

19.

Al-Hazmi H, Trbay M, Gomha A, Elderwy A, Khatab A, Neel K . Uronephrological outcomes of patients with neural tube defects. Does a spina bifida clinic make a difference?. Saudi Med J. 2015; 35 Suppl 1:S64-7. PMC: 4362106. View

20.

Colver A, Merrick H, Deverill M, Le Couteur A, Parr J, Pearce M . Study protocol: longitudinal study of the transition of young people with complex health needs from child to adult health services. BMC Public Health. 2013; 13:675. PMC: 3724698. DOI: 10.1186/1471-2458-13-675. View