The Effectiveness of Participation-focused Interventions on Body Functions of Youth With Physical Disabilities: An Interrupted Time Series Design
Phase: NA
Conditions: Cerebral Palsy, Spina Bifida, Muscular Dystrophies, Musculoskeletal Disorder
Sponsor: McGill University

Title: The Effectiveness of participation-focused interventions on body functions of 
youth with physical disabilities: An Interrupted Time Series Design  
Data of submission: September 27, 2016 
Data of approval for funding: March 23, 2017 
Date of approval by Ethics board: May 29, 2017 
  
Potential Impact 
Participation of youth with physical disabilities in community activities is restricted1, which 
is associate with poor health outcomes and undesired development targectories2. Traditional 
therapies for this population focus primarily on remediation of impaired body functions 
(e.g., muscle tone, joint mobility, balance) in order to reduce activity limitations and 
participation restrictions. However, activity-based goal-directed interventions that are client-
centered and implemented in the youth’s natural environment are currently considered 
recommended practice to improve daily activities3. It is unclear; however, whether 
interventions targeting activity and participation also result in improvement of body 
functions and participation - both key rehabilitation outcomes and meaningful outcomes for 
youth and their families. While research in exercise programs suggest that therapist-
prescribed exercise programs result in physical gains (e.g., postural control)4, the impact of 
participation in a chosen and meaningful, real-life activity (e.g., sledge hockey) on a range 
of body functions (i.e., motor, cognitive and affective) underlining the specific chosen 
activity has not been established. Moreover, effective methods for testing complex 
individual-based interventions and outcomes that are highly applicable to practice are 
lacking.  
 
This study aims to better understand the benefits resulting from intervention strategies that 
improve participation. It thereby tackles one of the pressing knowledge gaps in the field of 
pediatric rehabilitation3b and one of the urgent research priorities identified by both parents5 and 
clinicians6. To illustrate, in a worldwide survey of rehabilitation experts, social participation in 
leisure and recreational activities as well as movement-related components were ranked as the 
most relevant areas of functioning across all elements of the International Classification of 
Functioning Disability and Health (ICF)6. Aligned with this priority, this proposed project 
addresses outcomes at two key levels of the ICF, i.e., participation and body functions, with a 
single intervention strategy. These outcomes have not only been consistently identified as 
significant areas of restriction among children and youth with physical disabilities1, 7 but are also 
known to worsen with age 8, and further complicating the challenging transition to adulthood9. 
Youth with disabilities utilize healthcare services 5 times more than the typical adolescent 
population10. This, therefore, highlights the need to find better and more efficient methods of 
delivering healthcare services. It also emphasizes the importance of focusing on this 
developmental stage, i.e., youth, during which life-long habits can be established through 
positive experiences and opportunities for participation, capacity building and empowerment9.  

 
Interrupted Time Series design – a rigorous approach for studying complex interventions 
and outcomes 
Given the complexity and highly subjective nature of the outcome of participation, particularly 
when occurring in the community11, selecting pragmatic individual-based approaches that reflect 
and account for real-world clinical settings (e.g., variability of participants, their participation 
preferences/choices and their environmental characteristics) is critical 12. This pilot study will 
therefore employ a replicated individual-based multi-baseline experimental design across youth, 
termed Interrupted Time Series (ITS)13. In this design, the time-point in which the intervention is 
introduced for each youth is varied, and each youth serves as a unit of analysis and acts as its 
own control. By varying the baseline lengths across participants, extraneous variables are 
controlled for, which in turn strengthens the internal validity of the study allowing us to conclude 
with greater confidence that change in participation levels and body functions is due solely to the 
intervention. To further increase internal validity and to minimize potential bias, each youth is 
randomly assigned to the order (timing) of the intervention.    
Embedded in Comparative Effectiveness Research (CER)12 and in ITS designs14 we aim 
to achieve a broad and diverse sample of youth, as this provides an opportunity to replicate the 
intervention effect across different circumstances/environmental characteristics/community 
settings and, consequently, further supports the generalizability of results. ITS design is 
particularly relevant when targeting children with physical disabilities (e.g., CP) in which the 
variability in functioning is large15. It allows for heterogeneity within the studied sample and 
accommodates for complex cases, which is beneficial and meaningful in rehabilitation, as 
opposed to traditional Randomized Controlled Trials that employs strict exclusion criteria 
limiting the applicability of the findings to the clinical setting/reality. Furthermore, having a 
diverse sample allows for a better understanding of for whom and under what conditions the 
intervention is most and least effective – an important element of CER that can better inform 
clinical decision-making.  
To systematically evaluate the overall treatment effect of aggregated single individual 
intervention effects, we proposed an innovative statistical solution that involves a combination of 
segmented regression16 and mixed-effects Hierarchical Linear Modeling (HLM) – a technique 
found effective in a recent intervention study that was funded by CIHR and led by D. Anaby 
(NPA), targeting the outcome of participation. Notably, such an analytical approach can detect a 
change in outcomes that is clinically significant (e.g., the extent to which the intervention can 
result in a 2-point change on the activity performance scale of the Canadian Occupational 
Performance Measure) rather than estimate a general effect size and, therefore, provides 
meaningful evidence that can directly/better inform clinical decision-making. In summary, the 
proposed ITS design, accounting for intra-individual changes and involving innovative 
analytical solutions, is practical as it offers a rigorous alternative for efficacy studies and is 
considered most appropriate for studying participation-based interventions17.  
 
Anticipated impact for youth, clinicians and policy makers 
To date, only a few small-scale studies among children with physical disabilities have 
demonstrated that participating in mainstream, real-life, community-based activities/programs 
such as ice-skating and yoga leads to improvement of motor functions (i.e., balance, flexibility, 
posture, strength)18. Moreover, these studies do not document the impact of the above-mentioned 
activities on other body functions (e.g. self-esteem, attention span) and/or on participation 
outcomes itself (e.g., social interactions, developing friendships)18 . Concerted effort is therefore 
needed to evaluate the impact of interventions that are enjoyable, socially engaging, guided by 

youth preferences and occur within their natural environment across a range of body functions. 
Such interventions hold promise as they are perceived as motivating to the youth19 and can thus 
promote adherence to healthcare treatment and sustainability following their completion20.  
This early study in the area will build knowledge that can guide clinicians, families and 
policy-makers in appraising the benefits of participation-based therapies on improving functional 
capacities as well as actual performance of meaningful life activities. Findings can also 
encourage rehabilitation practitioners to consider additional intervention options for improving 
outcomes at the level of body function rather than solely focusing change on remediation of 
impairment. Increasing therapeutic options can contribute to customized care that is more 
responsive to the needs, resources and preferences of the youth and families. Furthermore, 
describing the multiple benefits potentially generated by one single intervention can facilitate the 
development of efficient youth-engaging therapies, therefore contributing to the improvement of 
the provision of pediatric rehabilitation services. Finally, in-line with CER, our study proposes a 
flexible client-centered intervention protocol using the ITS design which builds on a non-
concurrency principle – it does not require all participants to start the intervention 
simultaneously, which is a more accurate reflection of ‘real life’ practice.  
Scientific Merit 
 
With CIHR funding, we have established the effectiveness of the PREP intervention, i.e., 
Pathways and Resources for Engagement and Participation, in promoting youth participation21 22. 
The PREP23 is an environment-based approach aimed at improving participation in community 
activities by removing environmental barriers and coaching youth/parents. Using elements of the 
PREP, the goals of this study are to: 1) generate preliminary data of the effectiveness of youth 
engagement in a 6-week community-based activity program (e.g., sledge hockey) on underlying 
body functions (e.g., movement, attention, mood) and activity performance and 2) examine the 
feasibility and applicability of the proposed design and intervention protocol. Specifically, we 
aim: 1) to gather pilot data and explore the effectiveness of the intervention on change in 3 
relevant body functions: motor, cognitive and affective and to systematically replicate this 
effect across 8 youth with physical disabilities; 2) to estimate the optimal length and intensity of 
the intervention/community program, the relevancy of the proposed assessment kit in effectively 
capturing change in the three body functions and the feasibility of identifying and repeatedly 
collecting data on the specific 3 body functions underpinning each chosen activity; and 3) to 
examine the extent to which the outcomes vary within and across participants in order to 
estimate sample size required for a larger study. We anticipate: 1) a significant positive change 
in at least 2 of the 3 body functions within 6 of the 8 participants (75%) following the 
intervention; 2) that the proposed intervention protocol and study design will be feasible and 
applicable in at least in 6 out of the 8 cases; 3) obtaining a better understanding of whom and 
under what conditions/circumstances the intervention is most and least effective.  
 
Methods 
Eight youth, aged 15 to 24 years as defined by the United Nations24, will be purposefully 
selected from a pool of clients receiving services in two major rehabilitation centers in Greater 
Montréal from both the Anglophone and Francophone communities. Participants will be 
included if they have 1) a physical disability (e.g., cerebral palsy, spina bifida, musculoskeletal 
disorders, muscular dystrophy); 2) restricted mobility, such as an inability to navigate all 
surfaces and stairs independently and safely without the use of aids, physical assistance or 
external support. Multiple diagnostic categories will be used, as research among children and 

youth with physical disabilities shows that participation does not vary across specific diagnostic 
categories25. Moreover, such an inclusive approach reflects real-world clinical practice, where 
variability in functioning level is evident across patients, making the findings relevant to various 
conditions and, hence, highly applicable to practice. Youth who are recovering within the first 
year following a severe brain injury or an orthopedic surgery will be excluded, as their functional 
capacities are less likely to be stable.  
 
Intervention and Procedure  
Based on the 5-Ms or steps of the PREP approach23 found effective in improving youth 
participation21-22 (i.e., Make goals; Map out a plan; Make it happen; Measure the process and 
outcomes; Move forward), an Occupational Therapist (OT) will meet individually with each 
youth/family in their home. The intervention includes up to 12 hours of therapy time; the first 2-
hour session will encompass setting a new participation goal or activity that the youth would like 
to engage in yet finds difficult. The Canadian Occupational Performance Measure (COPM)26 
will be used to identify participation issues from the youth’s perspective. This process will lead 
to pinpointing a specific community-based activity that the youth will engage in for a period of 6 
weeks (e.g., ice skating, sledge hockey, boccia, yoga). Together with the youth and family (as 
needed), this activity will be analyzed using the Task Analysis approach27 to identify the specific 
underlying body functions that are required by the activity and that the youth finds most difficult 
and wants to improve on (e.g., posture, balance, strength, self-efficacy, attention). Three 
appropriate measures to monitor each corresponding function (motor, cognitive, affective) will 
be selected from a pool of 5 relevant scales. These 5 assessments, recommended by Majnemer28 
and guided by the ICF linking rules29 include: the Spinal Alignment and Range of Motion 
Measure (SAROMM), the Trunk Impairment Scale (TIS), the Functional Reach Test (FRT), the 
Jamar dynamometer for evaluating motor-related components, and the Behavioral Assessment 
System for Children (BASC-2) to assess cognitive and affective functions. To illustrate, if task 
analysis of sledge hockey indicates that trunk control or range of motion of upper extremity is 
required for activity engagement, TIS or the SAROMM will be used, respectively.   
Two weeks following the first session, the baseline period will start and the identified 
body functions will be repeatedly measured every week, as will the performance of the chosen 
activity by an assessor, independent of the intervention. During this baseline period, the OT will 
use the 5-Ms of the PREP protocol to search for the appropriate community program, to identify 
and remove potential environmental barriers for participation in that activity (e.g., accessibility, 
equipment) and to educate program instructors regarding the specific needs and abilities of the 
youth. This will set the stage for enrolment and engagement of the youth in a structured program 
offered at least once a week. Using a structured form, the therapist will document information 
about the program and any specific circumstances involved. The OT will also serve as a 
consultant and perform site visits during this 6-week program to ensure youth engagement. 
Based on our experience employing the PREP intervention, a 6-week duration is sufficient to 
observe change in activity performance21-22. This timeframe also permits the building of motor 
functions18a, 30 while considering aspects of program management and adherence that can 
potentially reduce dropout rates20.  
 
 
Study design  
Two blocks of an 18-week individual-based interrupted time series design with multiple 
baselines across 4 participants will be employed (Figure 1). To increase internal validity, each of 
the 4 participants will be randomly assigned to 4 different lengths of baseline: 2, 4, 6 and 8 

weeks. A 6-week intervention will then be implemented for each participant. Four outcome 
measures will be monitored weekly throughout the three phases of the study: baseline, 
intervention and follow up (week 16 and 18). Figure 1 illustrates the ITS design across 4 
participants; it will be replicated 2 times resulting in the examination of 8 participants. Three 
body functions: motor, cognitive and affective will be measured weekly, resulting in 3 individual 
trajectories of change – each based on 18 equally-spaced data points. The performance of each 
activity will also be monitored weekly using the performance scale of the COPM– a 10-point 
scale that is valid, reliable and sensitive-to-change26. This will result in 24 trajectories of change 
in body function (8 participants X 3 body functions) and 8 additional trajectories illustrating 
change in performance in the actual activity (8 participants X 1 activity). Thus, a total of 32 
trajectories, 4 per participant, representing 8 profiles of change will be plotted and analyzed. A 
combination of 8 cases measured on 18 occasions allows us to estimate the overall effectiveness 
of the intervention (Aim 1) as well as to determine aspects of feasibility and applicability (e.g., 
duration of intervention, optimal number and intervals of data points, etc) of this design (Aim 2) 
and assist in calculating a sample size for a larger clinical trial (Aim 3)31. 
 
 
A kit of outcome measures to assess body functions  
A kit of 5 measures will be available to assess motor, cognitive and affective body functions over 
time. Based on the task analysis, the therapist and youth will select one aspect of each body 
function (3 total) required to complete the chosen activity, while considering the existing 
impairments and strengths of the youth; 4 options of assessments will be available for the motor 
aspect and a single tool for both cognitive and affective functions with multiple sub-scales for 

each function. The therapist will match the assessment including specific sub-scales to the 
identified body functions by drawing on the ICF linking rules29. If more than one component of a 
specific body function is identified, the most impaired one will be selected by the youth. 
Assessors, independent of the intervention, will administer the assessments every week at the 
youth’s home (30-60 min). They will be blinded to the time point in which the intervention 
begins and to the actual chosen activity/program. 
 
To measure the affective (e.g., anxiety, social stress, self-esteem), and cognitive (e.g., 
attention problems, learning problems) aspects of body function, the self-report form or parent 
form of the BASC-2 will be used, depending on the youth’s ability. The BASC-2, completed in 
15-30 minutes, is a valid and reliable 4-point scale for evaluating behavior and self-perception of 
children; such as externalizing and internalizing problems, behavioral symptoms and adaptive 
skills/personal adjustment32. 
To measure motor-related body functions, four measures can be used: the SAROMM, 
the TIS, the FRT and the Jamar dynamometer. The SAROMM is administered by a trained rater 
and requires 15 to 30 minutes to complete; it measures active/passive range of motion of lower 
and upper extremities as well as spinal movements using a 5-point scale. The SAROMM has 
demonstrated good inter-rater and test-retest reliability (>.80) as well as sufficient construct 
validity33. The TIS assesses trunk control and includes 3 sub-scales; static sitting balance, 
dynamic sitting balance and coordination, and is administered in less than 20 minutes. It contains 
17 items rated on a 2-, 3- or 4-point scale. Total score ranges from 0 (low performance) to 23 
(high performance). The TIS was found to be reliable and valid among youth with CP34. The 
FRT assesses the maximum distance in inches the participant can reach forward while 
standing/sitting in a fixed position. It is a reliable, valid and responsive tool35 and takes 5 minutes 
to administer. The Jamar dynamometer measures grip strength; scores range from 0 to 200 
pounds of force and normative data has been established for youth36. 
All scores will be converted to z-scores based on available data of standard deviations and mean 
scores of this population; this will allow for comparison across trajectories and the examination 
of the overall effect of the intervention statistically (Aim 1). 
 
Anticipated output #1: A significant change in at least 2 of the 3 body functions will be 
observed in 6 of the 8 participants (75%) following the intervention.  
 
Two evaluators, both experts in analyzing multi baseline single-system replicated data, will 
analyze the data independently using a visual inspection approach following the guidelines of 
Hawkins et al37 to detect changes in body function over time. To minimize bias, experts will be 
blinded to the time point in which the intervention was introduced. Specifically, experts will 
indicate if/when a change in body function and activity performance has occurred, and the 
direction of that change (increase/decrease). Consensus between experts will be reached via 
discussion and consultation with a third expert. The number of trajectories indicating a 
significant positive change in outcomes will be counted.  
To complement visual inspection, the overall effect of the intervention will be 
statistically estimated within and across participants. Specifically, we will use an innovative 
analytical technique that combines segmented regression16 and mixed-effects HLM that was 
found useful in evaluating replicated individual-based ITS designs38. This meta-analysis of 
treatment effect uses a small-sample bias-correction method and accounts for autocorrelation and 
individual variance. Moreover, it can estimate the extent to which a change in outcomes (youth’s 
performance and functions) is clinically significant rather than solely reporting the effect size, as 
is common in traditional analytical approaches.  

 
Anticipated output # 2: Proposed intervention protocol and study design will be feasible and 
applicable in at least 6 out of the 8 cases. 
 
Information about the feasibility and applicability of the proposed approach in terms of length 
and duration of the program, length of baselines, number of completed data points/repeated 
measures, relevancy of assessments in capturing change in performance and body function will 
be recorded using a structured form/checklist. This form/checklist draws on the 
recommendations of Tickle-Degnen39 for examining feasibility elements. Two reviewers, 
independent of the study, will autonomously evaluate these elements for each case and any 
discrepancies will be resolved through a discussion until consensus is reached.  
 
Anticipated output # 3: To better understand to whom and under what conditions the 
intervention is most and least effective. 
 
The two experts will independently conduct a systematic classification process17. Each expert 
will detect similarities and differences in patterns of change within each case using Hawkins et 
al.37 guidelines. In this process, cases will be clustered based on aspects of change that reflect the 
extent of the intervention effect. Examples include: number of replicated effects across body 
function and level and trend of change. Once an agreement is reached and clusters are formed, 
group members/cases will be described in terms of age, sex, income, the characteristics of the 
community-based activity programs, the length, intensity and activity type (based on the 
therapist’s structured form) as well as functional issues (based on assessment of body functions). 
Such an analysis will allow us to identify the profiles of youth for whom the treatment is more 
effective and less effective as well as the conditions under which the change is observed or 
partially observed. Furthermore, this information, analyzed with the input of stakeholders, can 
inform the design of a larger clinical trial testing this intervention.   
 
Potential Challenges and ways to overcome them  
Like in many ‘real-life’ studies, youth may wish to continue participating in the chosen program 
beyond the 6-week period or decide to engage in an additional activity simultaneously. Such 
occurrences will be documented by the therapist and will be incorporated into the analysis. This 
information will assist in identifying specific circumstances that may influence the results 
(Anticipated output #3). It is plausible that specific programs prioritized by youth will not be 
available in their community at a certain time (e.g., seasonal sports). A discussion will take place 
to identify ways to engage in a similar activity while adhering to the area of interest that was 
expressed. The therapist will document this process. Additionally, some youth might prefer to 
start the intervention before completing the assigned baseline period (either 2, 4, 5, or 8 weeks). 
Through a discussion with the youth and their family, the reason for employing such procedure 
will be described. Furthermore, during the baseline period, youth are allowed to continue and 
receiving any ongoing rehabilitation services and this will not be affected by such a delay.  
Research team  
Our cross-province interdisciplinary team (occupational therapy, physical therapy and pediatric 
medicine) includes three researchers in the field of childhood disabilities, from two institutions: 
McGill University and McMaster University, and are all individually associated with the 
CanChild Research Centre and have full access to its resources including its vast networks and 
collaborative partnerships. All members have strong backgrounds in the development, 

functioning and participation of children and youth with physical disabilities and in developing 
and evaluating intervention programs and executing clinical trials. The research laboratory of Dr. 
Anaby, Nominated Principal Applicant, is located at a large rehabilitation center, ie., MAB-
Mackay Rehabilitation Centre of CIUSSS du Centre-Ouest-de-l’Île-de-Montréal, which provides 
service for individuals with disabilities, and is where she has formed strong collaborative 
research partnerships with clinicians and managers. To illustrate, two experienced healthcare 
professionals from this organization, who have delivered the PREP approach and are engaged in 
knowledge translation activities, have joined the team as Principal Knowledge Users. Dr. Anaby 
is a recipient of the FRQ-S Research Scholar Salary Award and the primary co–developer of the 
PREP approach and has led the examination of its effectiveness with funding she received from 
CIHR as a PI. She brings knowledge in the areas of participation-based interventions, 
collaborative knowledge translation initiatives, advanced statistical analysis as well as unique 
methodological approaches such as Interrupted Time Series (ITS) design. She will oversee the 
entire project from recruitment, implementation and evaluation of the intervention and will build 
upon her network with major rehabilitation centers, health networks, and research associations in 
Québec to attract additional stakeholders. A post-doc trainee from her research laboratory will be 
involved in the study to gain skills in patient-oriented research. Dr. Gorter, Principle Applicant, 
is a dual (pediatric and adult) trained specialist in physical medicine and rehabilitation 
(physiatrist), professor of pediatrics, holder of the Scotiabank Chair in Child Health Research, 
and Director of CanChild, a world-renowned center for Childhood Disability Research since its 
founding in 1989, and is the named Investigator of a SPOR-funded initiative in Chronic Disease 
(CHILD-BRIGHT). He has a remarkable track record in supervising graduate students including 
Post-doctoral trainees. Dr. Gorter brings extensive knowledge in the transition of youth with 
physical disabilities and their participation in physical activities as well as abundant experience 
in forming collaborative partnerships with families, practitioners and organizations. He will 
provide ongoing feedback throughout the entire study with a special focus on engaging 
stakeholders, analyzing and interpreting the data and will serve as a liaison to his extensive 
network in Ontario and around Canada for partner resources. He will also provide supervision 
for a PhD-level trainee who will be joining the team. Dr. Levin, a Principal Applicant and a 
senior researcher who has many years of experience in mentoring trainees, is an expert in motor 
control and motor learning of children with CP and brings abundant experience in conducting 
intervention studies and various types of clinical trials from single-case studies to RCT. She will 
serve as a consultant throughout the intervention phase and will advise about the evaluation and 
analysis of changes in body functions, in particular motor-related functions, methodological 
challenges and overall interpretation of the results. Rachel Teplicky, a collaborator, is a 
Knowledge Broker at CanChild and an occupational therapist. She is a co-developer of the PREP 
approach and the Participation Knowledge Hub and has extensive experience, of nearly 15 years, 
in knowledge translation, stakeholder engagement and implementation strategies. To illustrate, 
she is currently involved in the implementation of the Measure of Process of Care across the 
Applied Behavioural Analysis program in Ontario - a project funded by the Ontario Ministry of 
Children and Youth Services. She will facilitate the development of a consultation committee 
(described below) through building on her existing networks and will engage stakeholders in the 
research process. We are thus well-positioned to develop and systematically test the proposed 
intervention and to advance knowledge about innovative methods that can effectively test 
participation-based intervention strategies resulting in evidence that is highly applicable to 
practice and can lead to a multitude of benefits related to the youth’s development, function, 
health and social integration.  

Engagement and Partnership 
Drawing on elements of participatory action research40, we plan to fully engage relevant 
groups of stakeholders within the research process. Our team has established connections 
with seven key stakeholders in both Québec and Ontario. Our current partners include a 
youth/young adult (J. Hanes) and a family representative (L. Bonta), two healthcare 
professionals (A. Leduc, I. Cormier), a national NGO community organization that offers 
and advocates for leisure programs (J. Coulter) as well as two policy makers both mangers 
of large scale health care centre/college that provide rehabilitation and accessibility services 
(L. Turner, M. Aziz). Specifically, a Principle Knowledge User (M. Aziz), is an active 
member of a committee mandated to develop 3-year action plan related to social 
participation of individuals with disabilities across the MUHC – a major healthcare network 
in Quebec. Such a partnership will be pivotal in influencing and informing the direction and 
focus of rehabilitation services. Our partners will serve as knowledge brokers and will help 
develop networks by facilitating access to a range of potential knowledge users for on-going 
feedback and comprehensive input. Building upon their networks, a consultation committee 
including local representatives from both provinces (Québec, Ontario) and at the national 
level will be created to ensure inclusiveness and diversity of perspectives.  
The consultation committee will meet twice through a two-hour long web-based 
conference, and each will be followed by on-line interactive feedback. The first meeting will 
take place at the beginning of the study using the GoToMeeting program- an advanced 
videoconference tool that allows face-to-face discussion, screen sharing and an exchange of 
information across all attendees. During this meeting, the discussion will focus on elements 
of the intervention and fine-tuning according to the needs of youth/families, the clinical 
reality, the emphasis of current programs as well as the direction, vision and action plans of 
health and rehabilitation services that support participation. Specifically, representatives will 
be asked to advise about the optimal duration of program, applicability of the measurement 
kit and availability of local community participation programs, among others. They will also 
assist in identifying relevant target groups for collaboration including non-federal 
governmental resources interested in promoting the engagement of youth with disabilities in 
their community. Suggestions generated from the meeting will be integrated and circulated 
via FluidSurvey to all representatives who will then be asked to review the summarized 
information, provide comments and additional ideas. Responders will also have the 
opportunity to suggest other relevant stakeholders for further feedback. Input from all 
perspectives will be integrated to form a final comprehensive plan of the study. The second 
web-based conference meeting will take place during the later stages of the project once 
data collection is completed and initial analysis has been performed. During this meeting, 
stakeholders will advise about additional ways to examine the data, review and discuss 
preliminary findings and interpret the results to ensure meaningful recommendations are 
formulated and that subsequent knowledge meets their actual practice needs. Key 
recommendations will be then circulated to all representatives using a secondary online 
survey for final feedback.    
Such partnership activities will foster trust and result in a dedicated interdisciplinary 
research team that will jointly develop a strong and competitive large-scale research strategy 
to improve youth participation that is supported by partner funding. This research strategy 
will later be submitted to the SPOR multi-year iCT grant program.  

Mentoring and training 
Given that this project involves many stakeholder-researcher partnerships, it offers a unique and 
stimulating interdisciplinary learning experience in patient-oriented research. Trainees involved 
in this 1-year project will be benefit from the mentoring of researchers in the following areas: 
strategies for stakeholder engagement and partnership development, crafting individual-based 
youth-engaging interventions to promote the subjective outcome of participation as well as 
examining unique methods for designing clinical trials using the ITS approach. Specifically, we 
plan to invite two trainees in the field of pediatric rehabilitation: a post-doc who is currently 
being supervised by D. Anaby and a PhD student being supervised by JW Gorter, who will both 
work closely with these mentors throughout the process and will meet with them on a regular 
basis. The trainees will attend all meetings with the consultation committee and will assist in 
analyzing the interactive feedback provided by all parties. Specific learning goals will be jointly 
developed in the early stages of the study and will be monitored periodically, with a particular 
emphasis on gaining methodological skills related to Comparative Effectiveness Research, 
including alternative clinical trials as well as acquiring experience in collaborative approaches 
for fostering equitable and trustful partnerships. The trainees will also assist in analyzing the data 
and will be introduced to and apply innovative analytical solutions for conducting systematic 
analysis of replicated individual-based treatment effects for ITS design. This project will 
complement the trainees’ own area of interest and research focus, i.e., developing and testing 
intervention strategies for improving youth participation. Such an original learning opportunity 
will build capacity and foster additional merit for these young trainees, which can in turn 
facilitate further iCT patient-oriented initiatives in Canada.  
 
Timeline  
 
 
 
 
 
 
 
 
 
 
 
2017/18
April
April
Form consultation
committee &
meeting 1
Consultation
committee &
meeting 2
2 blocks of ITS
Data entry/Analysis
Ethics, training, recruitment
Report/KT
Activities
Figure 2 - Study Timeline

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(3), 270-5. 
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M., Toward the Development of the International Classification of Functioning Core Sets for 
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7. 
Tonkin, B. L.; Ogilvie, B. D.; Greenwood, S. A.; Law, M. C.; Anaby, D. R., The 
participation of children and youth with disabilities in activities outside of school: A 
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