The Journal of the Arkansas Medical Society Med Journal Feb 2020_Final | Page 11

AFMC: A CLOSER LOOK AT QUALIT Y
turns 18. A limited power of
attorney may help for patients with
mild to moderate impairments.
With either option, get updated
neuropsychological testing and
speak with legal counsel.
Planning for adult transition
should begin early. Encourage young
children to care for themselves within
their ability, such as picking up toys
when young or managing bladder
catheterizations as they get older.
These small steps have significant
implications later in life. Functional
independence with bowel and
bladder continence is associated with
higher income potential and quality
of life in adulthood. 1 Include children
in treatment plan discussions
and encourage participation. If
available, patients and family should
participate in a formal transition
clinic, focusing on health literacy
and SB management, starting in the
early teen years. Neuropsychological
testing will inform the level to which
individuals can realistically manage
their own care. Testing is available
through the Spinal Cord Disorders
Program at Arkansas Children’s
Hospital.
Currently, about 85% of SB
patients survive into adulthood. 4
Individuals with higher lesions
(above L2) and hydrocephalus are
more dependent on help from
others for self-care, mobility and
bowel/bladder management. Most
adolescents trail their typically
developing peers by about two to
five years in terms of psychosocial
development. However, by age 30,
approximately one-third will live
independently, one-third will require
some assistance and one-third will
routinely require assistance. A large
percentage (43-77%) live with their
parents. 5
While more than half will have a
romantic relationship, sexual function
may be impaired in adults with SB.
Men and women may have altered
genital sensation but generally report
higher levels of satisfaction with sex
than typical peers. 7 Unfortunately,
SB patients are vulnerable to sexual
abuse, reinforcing the need for
developmentally appropriate sexual
education. 8
Most women with SB can become
pregnant and carry a child to term. 9
Women at risk for carrying a child
with SB should take 4 mg. of folic
acid daily and follow with a high-risk
obstetrician throughout pregnancy.
Pregnant women are more at
risk of skin breakdown, elevated
intracranial pressure and urinary
tract infections. These issues can be
life threatening for mother and baby
if untreated.
Males with SB may have low
sperm health related to abnormal
innervation to the testes. If they
want biological children, they should
consult with a urologist capable of
sperm harvesting and storage. Males
may require medication or devices to
sustain erection. 10
Adults remain surgically complex,
but with different problems than
encountered in childhood. Rates
of shunt malfunction in adults
are lower than in children. 11
Orthopaedic issues such as scoliosis
or foot deformity usually have been
addressed by early adulthood but
may require ongoing management.
Knee and hip problems may become
more pronounced with age. 12
Medical concerns shift as
children become adults. Skin is less
resilient in adults and may be more
vulnerable to injury. 13 Sleep apnea
remains a consideration and may
require respiratory intervention. 14
Risk of cardiac and renal impairment,
obesity and diabetes increase with
age. 15 Bone density declines with
age and may result in fractures if
untreated. 16 Physical medicine and
rehabilitation specialists often follow
adults, managing equipment and
therapy needs and assisting with
referrals to other specialists. s
Dr. Hobart-Porter is medical director,
Spinal Cord Disorders Program and
Concussion Clinic, UAMS and Arkansas
Children’s Hospital.
REFERENCES
1. Spina Bifida Association www.
spinabifidaassociation.org/
guidelines retrieved 9-30-19
2. Burnmeister R, Hanny H, et.al (2005)
Child Neuropsychology 11, 265-283
3. Dennis M, Barnes M (2010) Devel
Disabilities Research Review 16 (1), 31-39
4. Dillon C, Davis B, et.al. (2000)
Euro J Pediatr Surg 10, 33-34
5. Bowman R, McLone D, et.al. (2001)
Pediatric Neurosurgery 34 (3), 114-120
6. Cope H, McMahan K, et.al. (2013)
Disability and Health Jour 6 (3), 236-243
7. Linstow M, Biering-Sorensen I, et.al.
(2014) J Rehab Med 46, 891-897
8. Finkelhor D (2009) Future Child 19, 169-194
9. Jackson A, Mott P (2007) The
Scientific World Jour 7, 1875-1883
10. Akre C, Light A, et.al. (2016) Child Care
Health and Development 6, 963-969
11. Piatt J (2010) J Neurosurg Pediatr 6, 236-243
12. Thomson J, Segal L (2010) Devel Disabilities
Research Review 16 (1), 96-103
13. Bryant R, Nix D (2016), St. Louis, MO: Elsevier
14. Epstein L, Kristo D, et.al. (2009) J of
Clinical Sleep Med 5 (3), 263
15. Adnerson T, Gregoire J, et.al. (2013)
Canadian J of Cardiolog 29 (2), 151-167
16. Dosa N, Eckrich M, et.al. (2007) J
Spinal Cord Med 30, (S1), S5-S9
AFMC WORKS COLLABORATIVELY WITH PROVIDERS,
COMMUNITY GROUPS AND OTHER STAKEHOLDERS TO
PROMOTE THE QUALITY OF CARE IN ARKANSAS THROUGH
EDUCATION AND EVALUATION. FOR MORE INFORMATION
ABOUT AFMC QUALITY IMPROVEMENT PROJECTS,
CALL 1-877-375-5700 OR VISIT AFMC.ORG.
February 2020
Volume 116 • Number 8
february 2020 • 159