Maher et al. BMC Pediatrics 2014, 14:31 http://www.biomedcentral.

com/1471-
2431/14/31

A pedometer based physical activity self-

management program for children and
adolescents with physical disability design and
methods of the StepUp study
Carol Maher1*, Angela Crettenden2, Kerry Evans2, Myra Thiessen3, Monica Toohey2 and Jim Dollman4

Abstract
Background: Physical activity affords a wide range of physiological and psychological benefits for children and
adolescents, yet many children with physical disabilities are insufficiently active to achieve these benefits. The
StepUp program is a newly developed 6-week pedometer-based self-management program for children and
adolescents with physical disability. Participants use a pedometer to undertake a 6-week physical activity challenge,
with personalised daily step count goals set in consultation with a physiotherapist. The study aims to evaluate the
effectiveness of the StepUp program, using a randomised control trial design.
Methods/design: A target sample of 70 young people with physical disabilities (aged 817 years, ambulant with or
without aid, residing in Adelaide) will be recruited. Participants will be randomly allocated to either intervention or
control following completion of baseline assessments. Assessments are repeated at 8 weeks (immediately post
intervention) and 20 weeks (12 weeks post intervention). The primary outcome is objective physical activity
determined from 7 day accelerometry, and the secondary outcomes are exercise intention, physical self-worth,
quality of life and fatigue. Analyses will be undertaken on an intention-to-treat basis using random effects mixed
modelling.
Discussion: This study will provide information about the potential of a low-touch and low-cost physical activity
intervention for children and adolescents with cerebral palsy.
Trial registration: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12613000023752.
Keywords: Physical activity, Disability, Intervention

Background health conditions such as asthma [5] and heart disease [6],
Physical activity affords wide-ranging physiological and and these are common comorbidities in children with
psychological benefits for children and adolescents, physical disabilities [7].
regardless of disability status [1]. However, regular Up to 3.7% of Australian children have a physical
participation in physical activity appears to hold important disability [7], in many cases affecting their ability to
additional benefits for individuals with physical participate in everyday life. Therapy and health services for
disabilities. For example, evidence is emerging that young people with disabilities have traditionally focussed
physical activity is vital for prevention of deterioration in on secondary prevention. A focus on physical activity, per
physical function and independence in young and middle se, for young people with physical disabilities is a
aged adults with cerebral palsy [2-4]. Furthermore, relatively fledgling field of research. Recent research has
physical activity plays a key role in the management of shown that young people with cerebral palsy and other
chronic physical disabilities are less physically active than their
non-disabled peers [8,9].
Maher et al. BMC Pediatrics 2014, 14:31 Page 2 of 8http://www.biomedcentral.com/1471-2431/14/31
It is also clear that young people with disabilities tend to
participate in lower intensity physical activities compared with
* Correspondence: [email protected]
1 children without disabilities [10].
Health and Use of Time Group, School of Health Sciences, University of
South Australia, GPO Box 2471, Adelaide, South Australia 5001, Australia 2014 Maher et al.; licensee BioMed
Full list of author information is available at the end of the article Central Ltd. This is an Open Access article
distributed under the terms of the Creative
Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided
the original work is properly cited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data
made available in this article, unless otherwise stated.
To date, just a handful of physical activity interventions Committee and the study protocol has been registered with
for young people with disabilities have been reported in the the Australian and New Zealand clinical trials registry and
scientific literature [11-14]. Ideally, such programs need to assigned the protocol number: ACTRN12613000023752.
be flexible, in order to accommodate the wide range of
participants gross motor abilities and interests. Study sample
Additionally, young people with physical disabilities are The study will aim to enrol 5070 participants. Participants
often geographically dispersed and face transport barriers, are being recruited through Novita Childrens Services, the
therefore programs which can be undertaken without major provider of community-based therapy, equipment
intensive face-to-face contact with therapists or fitness and family support services to young people with
instructors are advantageous. Furthermore, programs disabilities and special needs aged 018 years in the state
requiring minimal equipment and staffing resources offer of South Australia. Novita clients are eligible to participate
considerable potential to be incorporated into ongoing if they (1) have a physical disability, (2) are aged 817
services provided by therapists and health providers. years, (3) have mild-to-moderate levels of physical
Pedometers are small devices, typically worn on the disability (able to ambulate in the community with or
waist band which measure step counts [15]. without assistance; Gillette Functional Assessment
Pedometerbased interventions are a simple and effective Questionnaire levels 7, 8, 9 or 10 [18]), (4) live in or near
means of increasing physical activity, with a recent Adelaide, Australia, and (5) are considered by their parent
systematic review of pedometer-based interventions in to have cognitive ability to understand the program.
youth without disabilities finding that 12 out of 14 studies Exclusion criteria are (1) recent or planned medical and/or
produced significant increases in physical activity [16]. orthopaedic intervention (e.g. surgery or botulinim toxin
Furthermore, development of self-management skills is injections) impacting ability to be physically active, and (2)
believed to enhance well-being, self-determination and injury impacting on ability to partake in physical activity.
participation in health care, ultimately leading to improved Recruitment is taking place on a rolling basis from June to
health outcomes, as well as reduced health care utilisation December 2013.
(and associated costs) [17]. To address these issues, we
have developed a six-week selfmanagement, pedometer- Procedure
based physical activity program for young people with Potential participants identified from the Novita client
physical disabilities, titled StepUp. database are being sent an informative invitation letter.
This study aims to evaluate this new six-week Participants and their parents are required to give written
pedometerbased self-management program for ambulant informed consent to be involved in the study.
children and adolescents with physical disabilities.
Specifically, it aims to determine (a) whether the program Outcome measures
is effective in increasing physical activity over the course Assessments are being conducted at three data collection
of the 6 week intervention and at longer-term follow up, (b) time points (baseline, week 8 and week 20). The baseline
whether the program impacts physical self-worth, exercise assessment is conducted face-to-face at four sites located
intention, pain and fatigue and quality of life, and (c) the throughout metropolitan Adelaide, while the 8 week and 20
programs acceptability and engagement. week assessments are conducted via the post. Assessments
are delivered by non-blinded research personnel, however,
Methods/design there is minimal potential for bias given that the outcome
Study design measures are self-administered (i.e. surveys) by
The StepUp study is a two group (StepUp intervention participants. Research personnel have been trained in the
versus standard care) randomised controlled trial with data need to deliver the outcome measures in an impartial
collection at three time points; at baseline, end of manner. Participants who complete all three assessments
intervention (8 weeks post baseline) and follow up (20 will receive $50 honoraria in recognition of the time and
weeks post baseline; 12 weeks post end of intervention). effort involved in undertaking the accelerometry and
Ethical approval for the study has been granted by the survey assessments.
University of South Australia Human Research Ethics
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At each assessment point, participants will complete the to correlate with physical fitness test scores to
following measures: varying degrees (r = 0.23 - 0.57) [24] in
adolescents without disability.
1. Primary outcome: objective physical activity. c. Quality of life (QOL) is being assessed using
Objective physical activity is being assessed using theKINDL [25], a generic QOL instrument
Actigraph GT3X + accelerometers (ActiGraph, designed for children aged 816. This 24 item
Pensacola, FL). The accelerometer is worn at the waist scale records QOL in six dimensions, with the
on an elasticized belt, on the right mid-axillary line. subscale scores combining to produce a total
Participants are requested to use a wear-time log sheet score. The KINDL has been shown to have
to record time the device is put on and removed, as moderate-to-high internal consistency (0.63 < <
well as sleep and nap times. Since other studies have 0.84), moderate convergent validity with other
reported problems with meeting minimum-wear-time QOL instruments [25].
requirements with a waking hours protocol (i.e. daily d. Fatigue is being assessed using the
instrument removal for sleep), participants are PedsQLMultidimensional Fatigue scale [26]. This
encouraged to wear the accelerometer 24 hours per generic instrument for children aged 518 contains
day for 7 consecutive days. Accelerometers are 18 items assessing fatigue in three dimensions
initialized using ActiLife software [19], with an epoch (general fatigue, sleep/rest and cognitive fatigue),
length of 1 second and sampling rate of 80 Hz. with subscales tallied to produce an overall fatigue
Accelerometers are returned to the study site by reply- score. It has been demonstrated to have excellent
paid mail, at which time the research team verify the reliability and construct validity in a variety of
data for completeness using ActiLife software. Sixty paediatric patient populations [26-28].
minutes of consecutive zeros is being used to define
invalid minutes (i.e. minutes in which the The surveys (outcome measures 2a-2d) are being
accelerometer was not worn). The minimal amount of delivered in pen and paper format.
accelerometer data that is considered acceptable is 4
days, including at least one weekend day, with at least Randomisation
10 hours of valid wear time per day. If accelerometer Random allocation to the intervention or control condition
data are incomplete, participants are asked to wear the will take place after participants have completed all aspects
accelerometer for an additional 7 days (to a maximum of their baseline assessment.
of 14 days) to ensure that the minimal data Since age is recognised to impact childrens activity
requirements are met. Accelerometers have been levels [29], and impairment level is associated with activity
shown to accurately measure physical activity in level in children with physical disabilities [9], a stratified
children with physical disabilities (e.g. see [20,21]). randomised allocation procedure is being used to ensure an
2. Secondary outcomes: even balance of age and impairment levels between groups.
a. Exercise intention is being assessed using Given the recognised effect of season on physical activity
theLEAP II Exercise Intention Scale [22]. This [30], blocking is being employed to ensure a close balance
scale was originally designed for 5th 8th grade of participants in the intervention and control conditions
children. It examines intention to be physically throughout the study period, as recommended by
active, and consists of four items rated on a 5- CONSORT [31].
point scale, which are averaged to produce a Randomisation is being achieved using four sets of
single Exercise Intention score, ranging between opaque envelopes (Set 1: ages 812 years, Gillette level 7
1 and 5, with a higher score indicating higher or 8; Set 2: ages 1317 years, Gillette level 7 or 8; Set 3:
intention to be active. The factorial validity of this ages 812 years, Gillette level 9 or 10; Set 4: ages 1317
scale has been confirmed [22] and the scale has years, Gillette level 9 or 10). Each set includes six
been used previously with children with cerebral envelopes, with three containing control allocation, and
palsy [11]. three containing intervention allocation. Randomisation is
b. Physical self-worth is being assessed using the being undertaken by CM, who is provided with the
Physical Self-Worth Scale [23]. The scale contains participants ID number, age, and Gillette level, and who
6-items, each scored from 1 to 4 (with 1 = very has no direct contact with participants.
low self-worth and 4 = very high self-worth).
Test-retest in 7th and 8th graders has been shown
to be high (ICC = 0.86). The scale has been shown
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Description of the intervention

The StepUp intervention is a 6-week pedometer-based
physical activity program for children with physical
disabilities. It comprises two face to face visits and
fortnightly phone follow ups with the physiotherapist,
provision of a pedometer and StepUp handbook. There are
two versions of the handbook - one for 812 year olds, and
one for 1317 year olds. The core content of the handbooks
is the same, however the amount and complexity of the
written content vary between the two age groups to
accommodate the wide range of reading skills and
ageappropriate content between the groups. Graphic design
of the handbook has been undertaken by M Thiessen, who
has expertise in the design and presentation of written
information for children with reading difficulties,
supplemented by illustrations from a professional
illustrator. Further details of the intervention components
and materials are provided in Table 1 and Figure 1. Week
1 of the StepUp program is being used to determine
baseline activity levels (note this is distinct from the
baseline outcome measurement period, which used an
accelerometer to measure physical activity, and takes place
prior to the participant being assigned to either the
intervention or control group). Progressive daily targets are
then negotiated by telephone between the physiotherapist
and participant on a fortnightly basis.

Control condition
Participants randomised to the control condition are being
told that their health will be monitored for 20 weeks, and
are placed on a waiting list and provided with the full
StepUp program at completion of the study.

Program evaluation
Participants experiences and views regarding the StepUp
program are being evaluated using a purpose-designed
feedback survey (Additional file 1). At the end of the
intervention, participants in the intervention group are
invited to complete a 13-item feedback form, containing a
combination of Likert-scale and open-ended items
regarding what they thought of the various elements of
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Components Description

Contact with therapist Week 1 face to face visit to introduce StepUp program
Week 2 and week 4 5 minute phone call to negotiate weekly step count goals
Week 6 - face to face visit to debrief re the StepUp program, and counsel re future
plans for physical activity

Pedometer MP-100 pedometer (Yamasa Corp; Chiba, Japan)

Step count targets Step count targets for each week are negotiated with the therapist during the fortnightly phone
call. Where the average daily step counts is < 6000 in the preceding week, the progressive goal
aims to increase daily step counts by 10% compared with the previous week. Where the average
daily step counts is > 6000 in the preceding week, the progressive goal aims to increase daily step
counts by 5% compared with the previous week. Note that the 6,000 step cut off was based upon
our previous research with children with cerebral palsy [9,11].
StepUp handbook educational info & weekly Background info on using a pedometer, dealing with fatigue/pain/injuries, and how to
topic contact the physiotherapist.
Week 1 why be physically active
Week 2 how much is enough?
Week 3 Screen time
Week 4 Staying motivated
Week 5 Myth busters
Week 6 Step it up!

StepUp challenges The StepUp handbook contains a number of mini challenges which participants can complete,
such as Half Hour Hero (for taking 2000 steps in 30 minutes), Early Bird (1000 steps before
school),
Nature Lover (5000 steps going for a nature walk), Shopaholic (2000 steps at a shopping centre)
etc.
Tourist circuit Steps are tallied at the end of each week, and young people can see how far they have walked
(e.g. 55,000 steps = Mad Marathon (approx. 42 km); 450,000 steps = Euro Tripper
(walking approx. 343 km, the distance from London to Paris).
Wall chart Young people are encouraged to hang the wall chart in a prominent place (e.g. the fridge or
their bedroom) and mark off, or use provided stickers, to chart when they have met their daily
step goal, and when they have earned badges for the challenges and tourist circuit.
Rewards Participants are encouraged to negotiate rewards with their parents for meeting their daily
step count target. The parent booklet gives many ideas for rewards (including rewards
which have no cost).
Parent booklet Parents receive a booklet with information for supporting their child in the StepUp program
including negotiating rewards, ideas for encouraging the child and the whole family to be active,
and the physiotherapists contact details.
Table 1 Description of the StepUp program two groups, an alpha-level of 0.05 and power of 80%. The
the program, and what they liked, disliked and ideas for change in outcomes from baseline to 8 weeks and 20
improvement. Participants daily step counts throughout weeks, within and between groups, will be analysed using
the 6-week program are collected by the physiotherapist random-effects mixed-modelling, on an intention-to-treat
during the phone call and face-to-face appointments, and basis. The relationship between
will be used to determine engagement and adherence with
the program.

Analysis
A priori power analyses indicate that a sample of 42 will be
required to detect a medium size within-between group
interaction (f = 0.20), while a sample of 74 will be required
to detect a small-medium size within-between group
interaction (f = 0.15), assuming three repeated measures,
Maher et al. BMC Pediatrics 2014, 14:31 Page 6 of 8http://www.biomedcentral.com/1471-2431/14/31

primary and secondary outcomes and demographic includes researchers with expertise in physical activity
variables will be assessed and where relationships exist the measurement, physical activity intervention, childhood
demographic variables will be used as covariates. physical disability, the development of written materials
Data from the feedback survey and engagement data will for children with learning difficulties, as well as highly
be analysed descriptively. In addition, sub-group analysis experienced clinicians (physiotherapists and a
will be undertaken to determine whether the intervention psychologist). The program has been specifically designed
effectiveness is related to engagement/adherence. to be low-cost and low-touch in nature, so that if it is found
to be effective, it can be readily incorporated into ongoing
Discussion clinical services. A strength of the study is that it involves
Physical activity is important for physical and a rigorous randomised controlled trial design,
psychological health, as well as for maintenance of incorporating high quality outcome measures, including
physical function and independence in young people with objective measurement of physical activity. The StepUp
physical disabilities. Despite this, there have been few study is a single-site study. For budgetary and feasibility
rigorous studies aimed at intervening on physical activity reasons, the study can only sample from a finite population
in this population. (young people with physical disabilities meeting the
This project will evaluate the effectiveness of a novel eligibility criteria, including residing in Adelaide). We
pedometer-based physical activity self-management intend to invite the entire eligible population, and anticipate
program for young people with physical disability. 4070 participants will join the study, with a priori power
Strengths and weaknesses of the StepUp study warrant analyses suggesting a sample of this magnitude should be
discussion. The StepUp intervention has been carefully sufficient to detect small to moderate effects, should they

designed by a team of researchers and clinicians, which be present.

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an Australian Postdoctoral Research Fellowship from the Australian improve physical fitness of adolescents and young adults with spastic
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doi:10.1186/1471-2431-14-31
Cite this article as: Maher et al.: A pedometer based physical activity self-
management program for children and adolescents with physical disability
design and methods of the StepUp study. BMC Pediatrics 2014 14:31.