Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach 13 (2020) 621–627 621

DOI 10.3233/PRM-200744
IOS Press

Spina Bifida Guideline

Mobility guidelines for the care of people

with spina bifida
Pamela E. Wilsona,∗ and Shubhra Mukherjeeb
a
Department of Physical Medicine and Rehabilitation, University of Colorado School of Medicine, Children’s
Hospital Colorado, Aurora, CO, USA
b
Shriners Hospitals for Children-Chicago, Department of Pediatric Physical Medicine and Rehabilitation,
Northwestern Feinberg School of Medicine, Chicago, IL, USA

Abstract. The Spina Bifida Association (SBA) is the organization that represents the needs of the population with spina bifida
(SB). They are tasked with advocacy, education, optimizing care, and providing a social voice for those with spina bifida. In
response to the tenet of optimizing care they were tasked with developing up to date clinical care guidelines which address health
care needs for those impacted by spina bifida throughout their lifespan. This article will discuss the SB Mobility Healthcare
Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida.

Keywords: Myelomeningocele, spina bifida, neural tube defects, mobility

1. Introduction Mobility is defined as the ability to move within a

person’s environment including the home and commu-
The Spina Bifida Association (SBA) is the national nity. Methods of mobility will be different for each indi-
organization in the United States representing individ- vidual based on multiple factors. Different approaches
uals of all ages with spina bifida. One of the tenets of will need to be used based on functioning neurologic
the SBA is to be the driving force behind providing the levels [3,4]. Some children will be ambulatory without
best care possible for this population. High quality best assistive interventions while others will need bracing,
practice guidelines are a method to achieve this goal. assistive devices or wheelchairs to navigate the home
Guidelines not only improve quality of care but provide and community. Mobility is a fundamental learning ex-
a framework of standardized practice [1]. The Guide- perience for young children. It is well known that the
lines for the Care of People with Spina Bifida, as dis- childhood experience of exploring their environment
cussed here, followed a well-defined formalized process leads to enhanced cognitive and psychosocial develop-
of development [2]. These guidelines are multifaceted; ment [5]. Children with spina bifida may have signif-
however this discussion is focused on aspects of mobil- icant physical limitations that can impede this natural
ity and how this impacts the health and well-being of exploration and impact developmental progress. Health
those with spina bifida. care providers recognize the importance of ensuring
that young people with spina bifida have opportunities
to engage in meaningful activities. In addition, mobility
∗ Corresponding author: Pamela E. Wilson, Department of Physi-
needs may change as an individual ages; therefore it
cal Medicine and Rehabilitation, University of Colorado School of
is important for health care providers to factor in the
Medicine, Children’s Hospital Colorado, 13123 East 16th Ave, B-285,
Aurora, CO, 80045, USA. Tel.: +1 720 777 2806; Fax: +1 720 777 aging process. Having clear mobility guidelines, based
7297; E-mail: [email protected]. on clinical experience and evidence-based information,

1874-5393/20/$35.00 c 2020 – IOS Press and the authors. All rights reserved
This article is published online with Open Access and distributed under the terms of the Creative Commons Attribution Non-Commercial License
(CC BY-NC 4.0).
622 P.E. Wilson and S. Mukherjee / Mobility guidelines for the care of people with spina bifida

can provide practitioners across the country with the of clinical and research expertise. The first task for this
best tools to care for their patients. group was to review the previous guidelines and the
International Classification of Functioning, Disability
and Health (ICF) model and then develop the mobility
2. Guidelines goals and outcomes guideline goals and objectives (noted above). Since the
team was geographically separated the majority of work
The goals of the mobility guidelines were both prac- was done via electronic media conferencing. The team
tical and aspirational and divided into the three areas was then tasked with developing clinical questions that
listed below. would direct best care for the SB population. In addition
to relying on clinical expertise, questions were devel-
2.1. Primary oped and reviewed by a panel of consumers either with
SB or family members of a child/adult with SB. They
– Develop expectations for mobility based on age were then asked to rank the clinical questions based on
and neurologic level. importance to the population. It was extremely impor-
tant during this phase of guideline development to get
– Understand and utilize appropriate mobility de-
feedback from families and individuals so as to identify
vices and therapy interventions to optimize mobil-
what is really important in their day to day life and to
ity across the age spectrum.
understand the long-term needs of the SB population
from their perspective. The group could comment on
2.2. Secondary
the existing questions and were also able to propose
new ones.
– Reduce the threats and effects of pain, aging, neu- The next phase was to do a review of scientific lit-
rologic deterioration, and obesity on mobility. erature that had been identified by the SBA executive
– Reduce risk of pressure injuries. (Integument committee as being relevant to mobility issues for indi-
(Skin) Guidelines) viduals impacted by SB. It was necessary for the mo-
– Maximize safe functional mobility and acquisi- bility group to use historical articles as they provided a
tion of developmental milestones for social and framework for relating neurologic level to impairment
environmental exploration. and ultimately the mobility of an individual. They also
– Maximize safe and functional mobility for Activ- had to use data on normal development related to social
ities of Daily Living (ADL), as well as, social, and cognitive outcomes in young children.
recreational, and pre-vocational/vocational goals. Phase 3 methodology is well described in the article
by Dicianno et al. which reviewed the group consen-
2.3. Tertiary sus process and eventually led to the guidelines being
submitted to the SB oversight panel [7].
– Understand how primary and secondary outcomes
affect quality of life.
4. Results

3. Methods The literature review resulted in the team identifying

19 journal articles that were specific to mobility. There
was limited research available for many of the topics, so
The mobility group was tasked with researching and
the group had to expand the literature search to articles
developing guidelines of care for individuals with SB
related to development.
related to mobility across the age spectrum. This topic
In areas where there was limited information for
was in the previous set of guidelines and was identified
guidance the team had to develop an expert consen-
by the SBA as needing an update [6]. The initial phase
sus. When members could not reach consensus, the Ex-
of this process included searching current and historical pert Consensus Decision Pathway was used to achieve
evidence-based research and recruiting clinicians/sci- resolution [8].
entists with expertise in the identified topic area. The
guideline development process for each topic group
was well defined by SBA with timelines and working 5. Discussion
phases [7]. The mobility working group included physi-
cians and physical therapists with a long track record Movement is a basic human need for both survival
 P.E. Wilson and S. Mukherjee / Mobility guidelines for the care of people with spina bifida 623

Table 1
The clinical questions developed by the mobility group
Age group from
Clinical questions
guideline
0–11 months 1. What are expected developmental milestones based on the early neurological exam related to motor skills?
2. If early mobility is delayed, do mobility devices improve developmental outcomes such as cognitive performance,
social skills, and visual attention? Types of early mobility devices would include caster carts, pediatric cars, and
age-appropriate manual wheelchairs.
3. Do such mobility devices help with contracture prevention?
1 year–5 years 1. Does being overweight or obese impede the development of mobility?
11 months 2. Does a positioning/stretching program prevent contractures and how long does it need to be implemented?
3. What is the usual trajectory of gait development by neurologic level, including specific gait parameters such as cadence
and efficiency?
4. What is the role of treadmill training on gait development and fitness?
5. What are the long-term consequences of walking with or without orthoses/crutches on the joints in the lower extremities
and the spine?
6–12 years + 1. What is the usual trajectory of mobility-based acquisition of skills on neurologic function?
11 months 2. What are the factors that influence the transition from ambulation to wheelchair mobility for different neurologic
levels?
3. What are typical gait parameters and patterns for different neurologic levels?
4. What is the role of gait analysis to monitor gait and make recommendations to optimize function?
5. Is there a benefit of early use of forearm crutches or KAFOs to protect the knee joint from abnormal forces?
6. What is the impact of scoliosis on gait, transfers and wheeled mobility? Does spine surgery impact any of these
variables?
7. In wheelchair users, are there signs of early shoulder or wrist wear and tear? Does early wheeling adversely or
protectively affect upper extremity and trunk development?
8. What factors positively encourage independent mobility?
13–17 years + 1. What is the role of gait analysis to monitor gait and recommend interventions?
11 months 2. Should forearm crutches or KAFOs be used to protect the knee when torque has been identified? When should they be
instituted? Does early use prevent damage to the knee joint and prevent pain from developing?
3. What is the impact of scoliosis on gait, transfers, and wheeled mobility? Does spine surgery impact any of these
variables?
4. What is the impact of linear growth on walking ability?
5. What factors influence the child’s preference of wheelchair mobility over walking (for instance, energy efficiency,
balance, and speed)?
6. What is the rate and pattern of loss of ambulation for community and household ambulators by neurologic level? Are
there other main causes for loss of mobility besides pain, progressive weakness, growth, and obesity?
7. Are there benefits to using standing devices on ROM, bone health, and quality of life?
18+ years 1. What is the rate and pattern of loss of ambulation, ability to effect transfers and wheeled mobility? What causes loss of
mobility function (for instance, pain, obesity, aging, and fitness)?
2. Is there a role for gait analysis to monitor gait and optimize function (for instance, to assess joint torque and shear
forces)?
3. What is the role of forearm crutches or KAFOs to protect the knee when valgus forces at the knee may cause long term
knee pain?
4. Are there benefits to standing devices and walking therapy as an adult?
5. What is the role of physical therapy and fitness programs in maintaining mobility?
6. What factors impact mobility long-term (i.e., improving technique, shoulder strengthening, engaging in fitness
programs, and other activities)?

and development. We no longer have to “run from the formation clinicians can predict the level of mobility
lions” but we still retain that need to move. Mobility, a person will ultimately be able to achieve. Therefore,
the quality or state of being physically mobile, charac- understanding how neurologic lesions can impact mo-
terizes a person’s ability to move within their environ- bility provides the context for an honest and directed
ment. The quality of mobility can be compromised to discussion with families regarding that common first
varying degrees in individuals with SB. We know that question of “will my baby walk?”
movement and mobility follow a predictable pattern of Early research in children shows that mobility im-
development and that impaired neurologic function will pacts not only physical parameters but cognitive and
impact this process. Children with spina bifida have psychosocial factors. Children need to move to develop.
neurologic lesions that affect both motor and sensory Typically, motor development is a head to toe pro-
function and can impact mobility [9]. Using this in- cess [10]. The baby must overcome gravity and learn
624 P.E. Wilson and S. Mukherjee / Mobility guidelines for the care of people with spina bifida

Table 2
Current clinical guidelines for mobility
Age group Guidelines Evidence
0–11 months 1. Assess neurologic and motor level using standardized assessment tools so there is a baseline to Clinical consensus
monitor for neurologic changes.
2. Assess multi-domain developmental milestone progress using standardized tools. Clinical consensus
3. Refer to early intervention programs and implement physical and occupational therapy Clinical consensus
programs to optimize skill attainment in fine motor and gross motor domains.
4. Maximize motor development using good body alignment with an emphasis on trunk control as Clinical consensus [15,16]
a first key goal.
5. Use the “Back to Sleep, Prone to Play” model that emphasizes postural control acquisition as Clinical consensus [17]
the foundation of movement. Focus on antigravity muscle activity that engages the trunk
extensors before the trunk flexors. Lack of prone positioning is linked to developmental delays
in typical infants and therefore has an impact on children with disabilities.
6. Provide a family-centered approach and, in conjunction with the family, develop strategies to Clinical consensus
incorporate mobility within the home environment and daily routine.
7. Use casting, splinting, and orthoses to support and maintain alignment and movement. Monitor Clinical consensus, See
skin according to recommended guidelines. guidelines for Skin and
integument
8. Collaborate with orthopedic specialists to monitor for age specific musculoskeletal problems. Clinical consensus and the
Orthopedics guidelines
9. Encourage weight-bearing activities daily to promote bone health. Clinical consensus
1–5 years + 1. Assess neurologic level and strength changes using standardized assessment tools at each clinic Clinical consensus [18]
11 months visit. Monitor for changes in gait, sensation, bowel and bladder function, and musculoskeletal
changes.
2. If the child is not pulling to stand, consider using a standing frame or mobility device to get Clinical consensus
him or her upright and weight bearing.
3. Emphasize mobility options for all children including ambulation and wheelchairs. Make sure Clinical consensus [19]
parents are aware that all children who have the potential to walk may have some delay in
achieving this milestone.
4. Use appropriate bracing to assist weak muscles and protect the lower limbs from torque and Clinical consensus [20]
shear forces.
5. Ensure proper wheelchair fit, posture, and technique in children who use wheelchairs, in order Clinical consensus
to reduce energy expenditure and promote long-term function.
6. Have an understanding of options for durable medical equipment (DME) and consider current Clinical consensus
and future DME needs.
7. Encourage weight-bearing activities daily to promote bone health.
8. Collaborate with orthopedic specialists to monitor for age specific musculoskeletal problems. Clinical consensus and the
Orthopedic guidelines
6–12 years + 1. Assess neurologic level and strength changes using standardized assessment tools at each clinic Clinical consensus [18]
11 months visit. Monitor for changes in gait, sensation, bowel and bladder function, and musculoskeletal
changes.
2. Discuss with families the benefits of the different types of mobility devices including Clinical consensus [21]
ambulation aides and wheelchairs based on predicted mobility potential.
3. Monitor walking or wheeling ability with standardized outcome measures. Consider gait Clinical consensus [22]
studies if ambulation is changing or information is needed on optimizing bracing.
4. Continue flexibility, range of motion (ROM) and strengthening exercises to maintain mobility Clinical consensus [23]
goals, whether using ambulation devices or a wheelchair.
5. Teach independence in putting on and taking off orthoses. Clinical consensus
6. Educate child about the importance of physical activity to maintain flexibility, strength and Physical Activity
health, especially during growth years and explore adapted physical education opportunities or Guidelines [24]
recreational sports options with the family.
7. Start teaching children to be involved in their own care by educating them to watch for signs Clinical consensus,
and symptoms of pressure injuries, fracture, and neurologic changes. Self-Management and
Independence Guidelines
8. Ensure proper wheelchair fit, posture, and technique in children who use wheelchairs, in order Clinical consensus [25]
to reduce energy expenditure and promote long-term function.
9. Encourage weight-bearing activities daily to promote bone health. Clinical consensus
Collaborate with orthopedic specialists to monitor for age-specific musculoskeletal problems. Orthopedic Guidelines
 P.E. Wilson and S. Mukherjee / Mobility guidelines for the care of people with spina bifida 625

Table 2, continued
Age group Guidelines Evidence
13–17 years + 1. Assess neurologic level and strength changes using standardized assessment tools at each clinic Clinical consensus [18]
11 months visit. Monitor for changes in gait, sensation, bowel and bladder function, and musculoskeletal
changes.
2. Monitor ambulation or wheelchair mobility. If ambulation is declining, suggest alternate Clinical consensus
mobility options.
3. Continue therapy or home programs to maintain mobility goals, emphasizing flexibility, ROM, Clinical consensus
and overall strengthening.
4. Verify that the teenager knows how to check insensate skin, especially after activity, and how to Clinical consensus, Skin
ameliorate friction and pressure. and Integument Guideline
5. Optimize gait with supportive orthoses or devices for balance. Monitor for torque forces on the Clinical consensus [20]
joints or excessive forces in the upper body.
6. Explore the best mobility option with the teenager and have a frank discussion about the risks Clinical consensus
and benefits of all systems.
7. Monitor for a secondary injury and, if identified, implement a prevention program. Areas at risk Clinical consensus
of secondary injuries for children who walk are the knees and ankles and the shoulders and
wrists in those who use a wheelchair.
8. Recommend therapy interventions to maintain mobility if there is a change in functional status. Clinical consensus [26]
9. Collaborate with orthopedic specialists to monitor for age specific musculoskeletal problems. Orthopedic Guidelines
18+ years 1. Assess neurologic level and strength changes using standardized assessment tools at each clinic Clinical consensus [18]
visit. Monitor for changes in gait, sensation, bowel and bladder function, and musculoskeletal
changes.
2. Monitor walking or wheeling ability and check for factors that may negatively impact mobility. Clinical consensus [26,27]
3. Continue to discuss the benefits of being involved in physical activities. Clinical consensus
4. Continue with home programs to maintain flexibility, ROM, and strengthening as this will Clinical consensus
impact mobility.
5. Optimize gait with supportive orthoses or devices for balance. Monitor for torque forces at the Clinical consensus
knee or excessive forces in the upper body.
6. Teach adults with Spina Bifida about the systems of care related to mobility equipment and Clinical consensus
orthoses. Adults need to know how to identify who to call when they experience problems with
their mobility devices, and the extent of their health insurance coverage and benefits.
7. Educate adults on the importance of preventing loss of mobility (both ambulation and Clinical consensus
wheelchair) through the use of appropriate technique and maintaining a healthy weight and
level of strength.
8. Collaborate with orthopedic specialists to monitor for age specific musculoskeletal problems. Orthopedic Guidelines

postural control. This may be impaired in children with may choose to transition to using a wheelchair for pri-
spina bifida – therefore the guidelines around “back to mary mobility is a very personal decision. However,
sleep” and “prone to play” should be encouraged [11]. individuals should be made aware that this option may
These early programs are essential for motor control enhance mobility and quality of life.
and psychosocial development in all children, but may These guidelines were developed to help care
be even more critical for children with disabilities. providers and families optimize mobility across the age
Functional postural strategies used in therapy are crit- spectrum. Needs will change over time, but the benefits
ical for early foundational elements of mobility. De- of mobility remain the same. Changes in mobility due
velopmental milestones in children with SB may be to secondary complications or conditions, and the ef-
delayed or need adaptive strategies. At an age when fects of aging and overuse are not well understood. Best
a child should normally be sitting or standing the use practices that seek to understand and ameliorate threats
of adaptive equipment is perfectly acceptable in get- to maintaining healthy mobility need to be developed
ting them upright. Having an understanding of an indi- through future research.
vidual’s potential will help guide therapists in defining Below is a list of some known benefits of mobility:
strategies to facilitate movement. – Contracture management
Mobility can take on many faces including the use – Exercise: cardiovascular-respiratory effects
of a wheelchair as a way to navigate the environment. – Strength effects and endurance
Based on the individual’s neurologic and functional – Community engagement/household mobility
level, early adoption of a wheelchair ]may allow a child – Bone density
a capacity to explore their environment that might oth- – Bowel and bladder evacuation
erwise be compromised. The timing of when a person – Facilitates ability to perform self-care activities
626 P.E. Wilson and S. Mukherjee / Mobility guidelines for the care of people with spina bifida

– Pressure reduction/redistribution on a systematic process for reviewing and updating

– Improve underlying pain the guidelines. Future guidelines updates will be made
– Reduce stress available as they are completed.
The guidelines related to physical activity and well- Executive Committee
ness are additional resources related to benefits from – Timothy J. Brei, MD, Spina Bifida Association
movement [12]. Medical Director; Developmental Pediatrician,
There are a number of validated measures that a clini- Professor, Seattle Children’s Hospital
cian can use to assess mobility Scales such as the Hoffer – Sara Struwe, MPA, Spina Bifida Association Pres-
scale, Dias Functional Mobility Score, Pediatric Neuro- ident & Chief Executive Officer
muscular Recovery Scale (Peds NRS), and spatiotem- – Patricia Beierwaltes, DPN, CPNP, Guideline Steer-
poral gait parameters in children with myelomeningo- ing Committee Co-Chair; Assistant Professor,
cele (MMC) are just a few employed today. With the Nursing, Minnesota State University, Mankato
advent of actigraphy monitoring, movement and mobil- – Brad E. Dicianno, MD, Guideline Steering Com-
ity are able to be quantified and correlated with these mittee Co-Chair; Associate Medical Director and
scales. The authors feel that measures to follow neuro- Chair of Spina Bifida Association’s Professional
logic changes and track improvements should be used Advisory Council; Associate Professor, Depart-
in clinical practice. Recent data has shown that orthotics ment of Physical Medicine and Rehabilitation,
and gait aides positively impact stride and oxygen con- University of Pittsburgh School of Medicine
sumption [13,14]. As we begin to understand these con- – Nienke Dosa MD, MPH, Guideline Steering Com-
cepts, we can use this information to keep our patients mittee Co-Chair; Upstate Foundation Professor
with spina bifida moving longer and more efficiently. of Child Health Policy; SUNY Upstate Medical
University
– Lisa Raman, RN, MScANP, MEd, former Spina
6. Conclusion Bifida Association Director, Patient and Clinical
Services
Movement and mobility are often impaired in the – Jerome B. Chelliah, MD, MPH, Johns Hopkins
SB population. The SBA has developed the current Bloomberg School of Public Health
guidelines to help families and health care professionals Additional acknowledgements
optimize care by providing direction in approaching – Julie Bolen, PhD, MPH, Lead Health Scientist,
this population [2]. We celebrate victories and embrace Rare Disorders Health Outcomes Team, National
challenges to advance the care and science of those with Center on Birth Defects and Developmental Dis-
spina bifida. Further research will need to be done to abilities, Centers for Disease Control and Preven-
improve our understanding of mobility and its physical tion
and psychosocial benefits. Research gaps in secondary – Adrienne Herron, PhD Behavioral Scientist, In-
complications and medical conditions that impact mo- tervention Research Team, National Center for
bility may provide insight on how to best manage mo- HIV/AIDS, Viral Hepatitis, STD, and TB Preven-
bility over time. Movement is fundamental to the hu- tion, Centers for Disease Control and Prevention
man experience and we are entrusted to maximize a – Judy Thibadeau, RN, MN, Spina Bifida Asso-
person’s potential using the above guidelines. ciation Director, Research and Services; former
Health Scientist, National Spina Bifida Program,
National Center on Birth Defects and Develop-
Acknowledgments mental Disabilities, Centers for Disease Control
and Prevention
This edition of the Journal of Pediatric Rehabilitation Funding
Medicine includes manuscripts based on the most re- The development of these Guidelines was supported
cent “Guidelines For the Care of People with Spina Bi- in part by Cooperative Agreement UO1DD001077,
fida,” developed by the Spina Bifida Association. Thank funded by the Centers for Disease Control and Preven-
you to the Spina Bifida Association for allowing the tion. Its contents are solely the responsibility of the au-
guidelines to be published in this forum and making thors and do not necessarily represent the official view
them Open Access. of the Centers for Disease Control and Prevention or
The Spina Bifida Association has already embarked the Department of Health and Human Services.
 P.E. Wilson and S. Mukherjee / Mobility guidelines for the care of people with spina bifida 627

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