Journal of Pediatric Orthopaedics
20:765–770 © 2000 Lippincott Williams & Wilkins, Inc., Philadelphia
Assessing Physical Disability in Children
with Spina Bifida and Scoliosis
*Eugene K. Wai, M.D., *†Janice Owen, B.Sc., P.T., *‡Darcy Fehlings, M.D., F.R.C.P.C.,
and *†James G. Wright, M.D., M.P.H., F.R.C.S.C.
Study conducted at Bloorview MacMillan Centre and The Hospital for Sick Children, Toronto, Ontario, Canada
Summary: The purpose of this study was to develop a valid
and reliable questionnaire to assess physical disability related
to the spine in children with spina bifida and scoliosis and their
families. Eighty-eight items were generated from a review of
the literature and interviews with clinicians, parents, and chil-
dren with spina bifida and scoliosis. Items were reviewed by 40
children and ranked. After eliminating redundant items, the top
25 items were formatted into a self-administered questionnaire.
The questionnaire, completed 2 weeks apart, demonstrated “ex-
The prevalence of scoliosis in children with spina bi-
fida has been estimated to be as high as 50% (29,31,33,
35). Numerous studies reported the results of surgical
treatment of scoliosis in patients with spina bifida. The
majority of these studies focused on technical outcomes
of surgery (2–9,13,19,22,23,25–29,32,38–40). Surgery is
generally successful at correcting the scoliosis with av-
erage improvements of approximately 50% from preop-
erative levels. The morbidity of surgery, however, is sig-
nificant with high complication rates (4,25,27,32,40).
Furthermore, the functional benefit of surgery is uncer-
tain. The four studies evaluating the functional outcomes
after surgery were inconclusive (3,26,28,29). This uncer-
tainty may be related, in part, to the lack of reliable and
valid questionnaires. Moreover, these studies used out-
come measures that were clinician derived and therefore
may not have reflected the activities that are important to
the patients and their families.
The objective of this study was to develop a valid and
reliable instrument to evaluate those aspects of physical
disability related to scoliosis and important to children
with spina bifida and their families.
Address correspondence and reprint requests to Dr. J. G. Wright,
Division of Orthopaedic Surgery, The Hospital for Sick Children, 555
University Avenue, Toronto, Ontario, Canada M5A 1X8. E-mail:
jgwright@sickkids.on.ca
From *University of Toronto, †The Hospital for Sick Children,
‡Bloorview MacMillan Centre, Toronto, Ontario, Canada.
765
cellent” test-retest reliability (intraclass correlation coefficient
⳱ 0.88). Construct validity was established by high correlation
with a validated scale of overall disability: the Activities Scale
for Kids (r ⳱ 0.86, p < 0.01) and by correlations with global
assessment of function. In conclusion, the Spina Bifida Spine
Questionnaire is a valid and reliable questionnaire and can be
used to assess the outcomes of treatment for children with spina
bifida and scoliosis. Key Words: Physical disability—
Questionnaire—Spina bifida.
METHODS
The methodologic framework described by Guyatt et
al. (15) was used to develop the Spina Bifida Spine
Questionnaire (SBSQ). This approach formally ad-
dresses the issues of item generation, reduction, reliabil-
ity and validity. The study received ethical approval at
the research ethics boards of the participating hospitals.
Population and setting
Children eligible for this study were identified from
the administrative database of a regional spina bifida
clinic. The spina bifida clinic is a weekly multidisci-
plinary clinic (consisting mainly of nursing, physiother-
apy, occupational therapy, orthotics, seating, paediatric,
orthopaedic, neurosurgical, and urologic specialties).
Children are routinely followed every 6 months for the
first 2 years of life then annually thereafter.
Children eligible for this study were aged 7–16, with
spina bifida cystica (diagnosis of meningomyelocele,
meningocele, lipomeningocele, or lipomeningomyelo-
cele and scoliosis (at least 10° fixed lateral curvature on
anteroposterior radiograph along with rotation of verte-
brae). Because the questionnaires required an under-
standing of English, any non-English–speaking children
were excluded. Furthermore, children that had an ortho-
paedic operation, including spine surgery, within the past
year (from time of assessment) were also excluded, be-
cause their physical function may still fluctuate as they
recovered from their procedure.
766 E. K. WAI ET AL.
Item generation
The aim of the item generation was to create a com-
prehensive list of items of potential reference to children
with spina bifida and scoliosis. An initial pool of items
was generated by a review of the literature (15–
18,22,26,27,29), and interviews with orthopaedic sur-
geons (n ⳱ 5), pediatricians (n ⳱ 4), registered nurses
(n ⳱ 4), physical therapists (n ⳱ 8), and occupational
therapists (n ⳱ 4). These questions formed the basis
of a semistructured interview for families involving the
following content areas: sitting, walking, pressure sores,
transfer ability, dressing ability, orthotic use, limp, pain,
appearance, self-catherization ability, and stiffness.
Families of children with spina bifida and scoliosis gen-
erated a list of items related to the above content areas.
Furthermore, they responded to open-ended questions,
such as: “How does your back bother you?” and “How
do you think spinal surgery has changed (or will change)
your function?”. Interviews were conducted until no
new items were generated after five consecutive inter-
views.
Item reduction
The aim of the item reduction was to reduce the num-
ber of items to a relatively short questionnaire of <30
items. Forty children with spina bifida and scoliosis rated
the relative severity and importance of each item. These
were rated on a 5-point scales, ranging from not difficult
to unable to do, and from not important at all to ex-
tremely important, respectively. Two separate scores,
called product and sum impact scores, were determined
for each item (24). The product impact scores were the
individual importance ratings times the severity ratings
for each item averaged for the entire group. The sum
score was the individual importance ratings plus the se-
verity ratings for each item averaged for the entire group.
The top 45 items were ranked using the summed and the
product impact score. As expected, the rank order of the
items was relatively similar. Items were eliminated if
redundant or combined if similar in content to another
item with similar impact scores (e.g., getting into a car
and getting out of a car).
Questionnaire formatting and pilot testing
The remaining items were formulated into a self-
administered questionnaire (the SBSQ). As much as pos-
sible, the original wording for the item generated by the
children was used in the format of the questions. Chil-
dren responded to questions using an ordinal 5-point ad-
jectival scale from 0 (I can’t do it myself) to 4 (not hard
at all). A total score was determined by summing the
responses to the 25 questions so that a score of 100
indicated the highest score. For unanswered or not ap-
plicable questions, the mean item score for the entire
questionnaire was imputed. This strategy is used by
many outcome scales and should not introduce signifi-
cant bias if the questionnaires are considered homoge-
neous and designed to measure a single overall construct
(11,41). Because questions relating to use of wheelchairs
J Pediatr Orthop, Vol. 20, No. 6, 2000
may not be appropriate for community ambulators, for
non-wheelchair users, a score of 4 was assigned to items
relating to wheelchair use. Finally, the SBSQ was piloted
on 15 children with spina bifida and scoliosis to deter-
mine its sensibility, ease of use, and comprehensibility.
The final formatted version of the questionnaire is avail-
able from author upon request.
Reliability testing
Reliability was determined by administering the ques-
tionnaire at a 2-week interval to a sample of 28 patients
with spina bifida and scoliosis. Written and verbal in-
structions were given to the parents to let their child
answer the questions. Although parents were allowed to
read the questions to the child, it was explained that the
responses should mainly come from the child. The ques-
tionnaire was administered at the spina bifida clinic and
in the child’s home. Before the second administration of
the SBSQ, it was verified that the child’s condition re-
mained stable over the 2-week period. Reliability was
analyzed using the intraclass correlation coefficient
(ICC). The ICC, an index of concordance, is the ratio of
the between-subject variance and total variance. The ICC
ranges from 0 to 1, with ICC values >0.75 indicating
excellent reliability (14).
Validity testing
Construct validity was assessed as there are no gold
standards (i.e., criterion validity) for disability related
to scoliosis. Three hypotheses were tested in 80 children
with spina bifida and scoliosis. First, it was hypothesized
that the SBSQ would correlate well with an alternative
measure of physical disability in children, the Activities
Scale for Kids (ASK) (42). Second, it was hypothesized
that (i) children’s and parents’ global assessment of their
disability related to scoliosis would be more strongly
related to the SBSQ than with the ASK and (ii) chil-
dren’s and parents’ global assessment of their overall
physical disability would be more strongly related with
the ASK than with the SBSQ. Finally, it was hypoth-
esized that the SBSQ would be able to discriminate
among children with different sitting and ambulation
ability, which are often considered the primary activities
affected by spinal deformity (26,29). Stable sitters were
defined as those children who could sit upright unsup-
ported and able to reach and shift weight in two direc-
tions (i.e., transfer all their weight onto one ischial tu-
berosity without the use of their hands). Poor sitters were
defined as those who were able to sit upright but could
not shift their weight. Finally, unbalanced sitters were
those children that could not sit upright without the use
of their hands. Ambulation level was defined according
to the Hoffer ambulation scale (20).
Pearson’s correlation coefficient was employed to test
the strength of relationship between the SBSQ and other
measures of disabilities. One-way analysis of variance
was employed to determine if the mean SBSQ scores
for different groups of sitters and ambulators were dif-
ferent.
 ASSESSING PHYSICAL DISABILITY 767

TABLE 1. Summary of patient characteristics matted in the SBSQ. Except for minor wording changes
from the pilot testing, the final instrument (Table 2) was
Questionnaire Reliability Validity
development testing testing the same as the original pilot.
Characteristic (n ⳱ 57) (n ⳱ 30) (n ⳱ 80)
Reliability
Age (mean ± SD) 12.6 ± 3.6 12.7 ± 2.5 12.5 ± 2.7 Thirty children completed the questionnaire 2 weeks
Male gender 42.1% 40.0% 47.5%
Ambulation
after the initial administration. The reliability of the
Non 52.6% 53.3% 56.3% SBSQ was excellent with an intraclass correlation coef-
Exercise 14.0% 10.0% 11.3% ficient of 0.88.
Household/community 33.3% 36.7% 32.6%
Previous spine surgery 31.6% 36.7% 31.3% Validity
Neurologic level Table 3 lists the correlations between the SBSQ and
T12 or higher 45.6% 43.3% 48.8%
L1–L3 19.3% 16.7% 16.3%
other measures of disability used for the construct valid-
L4 or L5 17.5% 20.0% 18.8% ity testing. There was excellent correlation between the
Sacral 17.5% 20.0% 16.3% SBSQ and the ASK (r ⳱ 0.86). As well, the SBSQ
marginally correlated better than the ASK with parents’
RESULTS (r ⳱ 0.25 vs. 0.21) and children’s (r ⳱ −0.23 vs. −0.17)
assessment of the disability related to the back. As an-
The characteristics of the children who participated in ticipated, the ASK correlated better with the global as-
the three stages of the SBSQ are outlined in Table 1. The sessments of overall physical function (r ⳱ −0.51 and
mean scoliosis of the patients was 37° (range, 10°–110°). −0.54).
Questionnaire development One-way analysis of variance demonstrated that the
Seventeen children and their families were inter- mean SBSQ score for children with different ambulating
viewed in the item-generation phase and 88 separate (F ⳱ 21.8, p ⳱ 0.0001) and sitting (F ⳱ 17.4, p ⳱
items were generated. The expert panel reviewed 45 0.0001) ability were significantly different. Figure 1 out-
items with the highest impact scores. After elimination of lines the median SBSQ score for children with different
redundant items, the remaining 25 questions were for- levels of ambulation and sitting.
TABLE 2. The Spina Bifida Spine Questionnaire—individual items and scoring
Scoring
Not hard A little Moderately Very I can’t
Item: Last week how hard was it for me to . . . at all hard hard hard do it at all NA
1. Walk 4 3 2 1 0 Delete
2. Walk without a body brace 4 3 2 1 0 Delete
3. Keep up with my friends when walking 4 3 2 1 0 Delete
4. Wheel my wheelchair 4 3 2 1 0 4
5. Keep up with my friends in my wheelchair 4 3 2 1 0 4
6. Move to and from the tub (or shower) from my wheelchair 4 3 2 1 0 4
7. Move to and from the toilet from my wheelchair 4 3 2 1 0 4
8. Move to and from the car from my wheelchair 4 3 2 1 0 4
9. Put on my braces myself 4 3 2 1 0 Delete
10. Put on my shoes and socks myself 4 3 2 1 0 Delete
11. Put on my pants myself 4 3 2 1 0 Delete
12. Get clothes to fit me 4 3 2 1 0 Delete
13. Look good in my wheelchair 4 3 2 1 0 Delete
14. Do my enema myself 4 3 2 1 0 Delete
15. Insert the catheter myself 4 3 2 1 0 Delete
16. Take a bath or shower by myself 4 3 2 1 0 Delete
17. Balance so I don’t feel like I’m falling when sitting 4 3 2 1 0 Delete
18. Sit straight in my wheelchair 4 3 2 1 0 Delete
19. Bend over to pick something up from the floor 4 3 2 1 0 Delete
20. Turn to reach while sitting 4 3 2 1 0 Delete
21. Go from sitting to standing (with or without braces) 4 3 2 1 0 Delete
22. Go up and down stairs 4 3 2 1 0 Delete
23. Play wheelchair sports 4 3 2 1 0 Delete

Not bad A little Very Extremely

Last week, how bad was . . . at all bit bad Bad bad bad NA
24. Feeling uncomfortable when sitting in my wheelchair 4 3 2 1 0 Delete
25. The pain when wearing a body brace 4 3 2 1 0 Delete
Raw score ⳱ sum of item’s score ⳱
Number of items answered ⳱ 25 − number of deleted items ⳱
Total score ⳱ (raw score/number of items answered) × 25 ⳱

NA, not applicable.

J Pediatr Orthop, Vol. 20, No. 6, 2000

768 E. K. WAI ET AL.
TABLE 3. Construct validity—correlation matrix of measures of
physical disability
Variable
SBSQ
ASK
Parents’ rating of back disability
Children’s rating of back disability
Parents’ rating of overall disability
Children’s rating of overall disability
DISCUSSION
The SBSQ is a reliable and valid disease-specific self-
administered questionnaire assessing children with spina
bifida and scoliosis. The SBSQ was developed from the
viewpoint of the children and their families rather than
from the viewpoint of the health care provider. An ex-
haustive approach was employed to ensure that all items
that the children and families thought was relevant to
their disease was represented in the questionnaire devel-
opment. Furthermore, the use of the impact score en-
sured that items that were important to the children were
included in the final instrument. Finally, the wording of
children when discussing their symptoms and disability
were used in constructing the individual items.
The SBSQ did not vary substantially when assessed
over a 2-week interval administered in home and clinic
settings. This suggests that the SBSQ is a reliable ques-
tionnaire that can be used in various settings. The SBSQ
discriminated among groups of children with different
levels of ambulation and sitting. Further construct valid-
ity of the SBSQ was demonstrated by significant corre-
lations with an overall assessment of physical disability
(the ASK). Moreover, the SBSQ correlated better with
global ratings of perceived disability that arises from the
spinal deformity than the ASK, suggesting that it may be
a more useful discriminator of spine-specific disability.
FIG. 1. Median SBSQ scores for children with different levels of
ambulation and sitting. Whiskers (lines on each side of median
scores) represent 75th and 25th percentile score. * Signifies that
group means were significantly different (p = 0.0001) with one-
way analysis of variance.
J Pediatr Orthop, Vol. 20, No. 6, 2000
Pearson’s correlation coefficient
(p value in parentheses)
SBSQ ASK
1 (0)
0.85 (0.0001) 1 (0)
−0.25 (0.032) −0.21 (0.072)
−0.23 (0.051) −0.17 (0.15)
−0.48 (0.0001) −0.51 (0.0001)
−0.52 (0.0001) −0.54 (0.0001)
Future studies will need to compare the responsiveness
of the SBSQ with other instruments.
Many generic instruments have been developed to as-
sess physical disability in children including the ASK
and the Pediatric Outcomes Data Collection Question-
naires (PODCQ). The PODCQ is part of the American
Academy’s Musculoskeletal Outcomes Data Evaluation
Management Systems (MODEMS) (1). These scales
have been reviewed elsewhere with a description of their
advantages and disadvantages (43). The main advantages
of these instruments is that they are designed to assess a
wide spectrum of children and, as such, are useful for
comparing across different populations of children. The
main disadvantage of these general or generic measures
is that they may not address those aspects of disability
that are important to a specific population or disease.
Furthermore, they may not be as responsive to change in
following intervention. The intent of the MODEMS in-
strument was that they should serve as the core instru-
ment and should be supplemented by additional subs-
cales focusing on the specific disease or condition of
interest. Scales that focuses on the concerns of specific
populations have been called disease-specific, or condi-
tion-specific, scales. Thus, disease-specific instruments
that take into account these specific aspects of disability
add to a generic instrument in the assessment of a dis-
ability caused by a specific disease or condition.
Several disease-specific outcome scales have been de-
veloped for the assessment of spina bifida or neuromus-
cular disease (12,26,30). These scales have several po-
tential disadvantages. First, many of these scales do not
focus on those aspects of physical disability that are re-
lated to spinal deformity. For example, the Spina Bifida
Health-Related Quality of Life Questionnaire (HRQOL)
is a well-validated 50-item questionnaire designed as a
discriminative measure of a subject’s overall well-being,
consisting of subdomains in social, emotional, intellec-
tual, financial, medical, independence, environmental,
physical, recreational, and vocational domains (30). Be-
cause the items in this questionnaire assess primarily
how a subject fits into their societal role given the con-
sequences of their spina bifida and related disabilities, it
is a measure of the child’s handicap. However, the prin-
cipal effect of spinal deformity, as well as the focus of
treatment, is the physical disability that arises from the
deformity. Thus, a questionnaire such as the HRQOL,
which assesses handicap, is probably not the most ap-
 ASSESSING PHYSICAL DISABILITY
propriate for assessment of the physical disability related
to spinal deformity. For example, one of the questions
asks whether the child feels that his/her present wash-
room is suitable. The answer to this question requires not
only an evaluation of the child’s physical disability but
the environment in which he/she lives. Therefore, this
questionnaire, although important for quality of life, as-
sesses factors unrelated to the spinal deformity.
Other instruments are geared toward younger children
and therefore are not appropriate for assessment of sco-
liosis, which affects primarily older children. For ex-
ample, the Pediatric Evaluation of Disability Inventory
(PEDI) is a functional assessment instrument for the
evaluation of disabled children that was originally vali-
dated in children with spina bifida (12). However, not
only is the PEDI a long questionnaire with 197 items, but
it was intended for children aged 6 months to 7 years.
Similarly, the Inventory of Developmental Guidelines
for Children with Myelodysplasia is quite long at 166
items and is aimed at assessing the developmental status
of younger children as opposed to their disability (37).
Seven studies assessed disability in children with
spina bifida and scoliosis (3,10,21,26,27,29,36). These
studies focused on the assessment of specific aspects of
disability, such as sitting and pressure sores, identified as
important issues by clinicians. This approach to the as-
sessment of disability is problematic for two reasons.
First, and most important, this type of assessment is cli-
nician centered and may not take into account items that
are important to the children with the disease or their
families. The concerns of clinicians need to be assessed
in the evaluation of any treatment, but in addition, a
child-centered questionnaire would specifically address
the concerns of the children and their families. Second, it
does not take into account the relative importance of the
specific aspect of disability in relationship to the con-
struct of overall physical disability. For example, sitting
balance is often the focus of many studies; however, it is
unclear how important sitting balance is to overall physi-
cal disability.
Mazur et al. (26) developed a scale for the assessment
of disability in children with spina bifida and scoliosis.
This scale contains 10 subscales (consisting of motor
level, sensory level, cerebral function, activities of daily
living, mobility, seating, school, urinary, skin break-
down, and back pain). The reliability of this scale has not
been tested, and there are potential problems concerning
its validity. For example, cerebral function is part of the
scale; however, it is questionable whether it is affected
by spinal deformity. Finally, the scale was developed by
a clinician and potentially does not include items that are
important to spina bifida children and their families.
In conclusion, the SBSQ had good measurement prop-
erties and was useful as a discriminative instrument. It
was developed as a disease-specific measure of physical
function, taking into account items that are important to
children with spina bifida and scoliosis. The SBSQ is
potentially useful in the evaluation of the effectiveness of
therapeutic interventions in children with these condi-
tions.
769
Acknowledgment: The first author is supported by a post-
doctoral fellowship from the Easter Seals Research Society of
Canada. The senior author is the Robert B. Salter Chair of
Pediatric Surgical Research and is supported as a Medical Re-
search Council of Canada Scientist. This research was sup-
ported by a grant from the Spina Bifida Association of Canada.
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