http://informahealthcare.com/pdr ISSN: 1751-8423 (print), 1751-8431 (electronic) Dev Neurorehabil, Early Online: 1–15 ! 2015 Informa UK Ltd. DOI: 10.3109/17518423.2015.1004763

Exploring suitable participation tools for children who need or use power mobility: A modified Delphi survey Debra A. Field1,2,3, William C. Miller1,2,4, Stephen E. Ryan5,6,7, Tal Jarus1,4, & Lori Roxborough3

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1

Graduate Programs in Rehabilitation Sciences, University of British Columbia (UBC), Vancouver, British Columbia, Canada, 2Rehabilitation Research Program, GF Strong Rehabilitation Centre, Vancouver, British Columbia, Canada, 3Sunny Hill Health Centre for Children, Therapy, Vancouver, British Columbia, Canada, 4Department of Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, British Columbia, Canada, 5Holland Bloorview Kids Rehabilitation Hospital, Bloorview Research Institute, Toronto, Ontario, Canada, 6Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, Ontario, Canada, and 7Graduate Department of Rehabilitation Sciences, University of Toronto, Toronto, Ontario, Canada Abstract

Keywords

Objectives: To identify suitable tools for measuring important elements of participation for children, aged 18 months to 12 years, who need or use power mobility, and to indicate which tools should be considered for inclusion in a measurement toolkit. Methods: Parents, therapists and researchers with expertise in paediatric power mobility and participation (n ¼ 70) completed an online modified Delphi survey, with consensus set a priori 480% agreement. Existing tools were matched against participation elements ranked most important for those in early childhood (18 months–5 years) and of school-age (6–12 years) by the panel. Results: Six out of 13 tools demonstrated potential, meeting at least three elements each, although none addressed all elements deemed important to measure by the panel. Only the Participation and Environment Measure for Children and Youth (PEM-CY) reached consensus for inclusion in a participation measure toolkit. Conclusion: Further evaluation of these tools with this population is warranted.

Rehabilitation outcome, measurement, paediatrics, mobility limitation, wheelchair

Introduction For children who have difficulty walking and keeping up with their family and peers, participating in everyday life situations can be challenging [1]. Participation restrictions are disabling [2, 3] and may lead to decreased quality of life [4]. Promoting participation is an important rehabilitation goal and one of the most meaningful goals for children with disabilities and their families [5, 6]. Power wheelchairs and other power mobility (PM) interventions are recommended to facilitate participation in everyday life situations, enabling children to move about independently and engage in activities they want or need to do [7, 8]. As occupational therapists and physical therapists strive to integrate evidence-informed strategies into their clinical practice, they look to the literature as a resource for goalsetting, decision-making and programme evaluation [9, 10]. However, limited empirical evidence exists to support the role that PM plays in optimising participation of children with mobility limitations [11, 12], despite recognition of the importance of participation-related outcomes [6, 13–17]. The lack of validated participation measurement tools for this population is likely a contributing factor [11, 15, 18, 19].

Correspondence: Ms Debra A. Field, Sunny Hill Health Centre for Children, Therapy, 3644 Slocan St, Vancouver, British Columbia V5M 3E8, Canada. E-mail: [email protected]

History Received 27 October 2014 Revised 26 December 2014 Accepted 3 January 2015 Published online 27 March 2015

Prior to investigation of PM outcomes, appropriate tools need to be identified and validated [15, 17]. As a number of paediatric participation tools exist, the question arises as to which tools are most appropriate for use with this population. Reviews of paediatric participation tools are plentiful [20–31], with many focusing on children with specific diagnoses [25–31]. Given that children who use PM have a range of diagnoses [7, 8], the question arises regarding the relevance of tools for those with diagnoses other than those investigated. Other considerations are also important: (i) some tools have been developed for use with individuals who have a particular diagnosis [32–36], requiring further testing before reliability and validity can be estimated for other populations [26]; (ii) although tool evaluation may have included children using PM, wheelchair use is not expressly described in the literature, leaving one to question the tools’ validity for those individuals [15, 17]; (iii) some tools include items requiring gross motor or fine motor skills beyond abilities of children who use PM [1, 37], rendering the items inappropriate or limiting the tools’ ability to detect functional change for this group of children; and (iv) scoring may be punitive against use of assistive technology, putting these children at a disadvantage [15, 17]. Another challenge to identifying tools suitable for children who use PM arises when comparing and selecting tools that are based on differing theoretical constructs or differing operational definitions of participation [5, 13, 15, 21, 38]. Some tools (e.g. Pediatric Evaluation of Disability Inventory

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(PEDI) [39], Functional Independent Measure for Children (WeeFIM) [40], School Function Assessment (SFA) [41], Assessment of Life Habits (LIFE-H) [1], Activities Scale for Kids (ASK) [42] and Lifestyle Assessment Questionnaire (LAQ) [32, 33]) predate the adoption of the International Classification of Functioning, Disability and Health (ICF) [2, 3], yet remain relevant with a body of empirical evidence supporting their use [21, 25, 27, 28, 38]. Other tools (e.g. Children’s Assessment of Participation and Enjoyment (CAPE) [43], Preferences for Activities of Children (PAC) [43], Child and Adolescent Scale of Participation (CASP) [35], Participation and Environment Measure for Children and Youth (PEM-CY) [44], Assessment of Preschool Children’s Participation (APCP) [45], Children Participation Questionnaire (CPQ) [46], Short Child Occupational Profile (SCOPE) [47], Preschool Activity Card Sort (PACS) [48], Child Occupational Self Assessment (COSA) [49] and Frequency of Participation Questionnaire (FPQ) [34]) have been developed more recently [20, 22, 23, 26, 29, 31] and therefore have used current definitions of participation. Some tools include participation-related items among other constructs being evaluated [39, 40], others explore one aspect of participation in depth, (e.g. Children Helping Out: Responsibilities Expectations and Supports (CHORES) [50], SFA [41], School Outcome Measure (SOM) [51], Pediatric Community Participation Questionnaire (PCPQ) [52], Pediatric Interest Profiles (PIP) [53]), while still others are more open-ended, being dependent on individualised client-centred outcomes (e.g. Canadian Occupational Performance Measure (COPM) [54] and Goal Attainment Scaling (GAS) [55]). Tools vary by who the respondent is, what dimensions of participation are evaluated, where participation takes place, and how developmental change is measured [5, 13, 21, 38]. How the child’s participation is carried out also varies between tools. Finally, given that participation is influenced by many factors [2, 3, 6, 13, 14, 56, 57], some tools address barriers and facilitators of participation, while others do not [5, 13, 15, 21, 38]. Given the variations across measurement tools, it’s imperative that therapists and researchers identify those elements that are important to measure for their particular situation. Prior research To identify suitable tools that are relevant for children who use PM, our previous work identified elements of participation that were most important to measure for our population [58] (i.e. children who use PM between the ages of 18 months and 12 years). We refer to those using PM as those currently using PM along with those needing but not yet having such equipment. We define elements of participation as the ‘who, what, where and how’ of measuring participation, including: who should be the focus of the evaluation, whose views should be sought, what kinds of participation (objective and subjective dimensions) should be evaluated, where it takes place and how participation should be measured [58]. Participation is operationalised to include domestic life, interpersonal interactions and relationships, major life areas, community and social and civic life [2, 3]. We employed a four-round modified Delphi survey (Figure 1) to engage key stakeholders in a consensus-building process [58] to

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synthesise and strengthen evidence inherent in clinical practice [9, 59] and to advance participation measurement for our population [60, 61]. In this article, our primary objective is to report on the fourth and final round of the Delphi survey. Specifically to (a) use the identified important elements to distinguish suitable tools for measuring participation in children who use PM, and (b) identify which tools should be considered for inclusion in a measurement toolkit for clinical and research applications.

Methods A modified Delphi survey technique [62, 63] was used to promote an efficient, economical method of knowledge exchange and creation with a geographically diverse panel, allowing participants the opportunity to reflect on their answers individually and collectively while providing nonbiased disclosure [62, 63]. The local university research ethics board provided approval. Participants Participants were a purposive, volunteer sample, recruited using both direct and indirect strategies [58]. Inclusion and exclusion criteria were set to identify those with significant experience living or working with children who use PM or with expertise in measuring participation for children who have physical disabilities [58]. Those who completed at least two of the three earlier rounds were invited to complete the fourth online survey. Procedures Development of the fourth round was informed by data analyses of the third round [62] and used FluidSurveyß software [64]. We focused our investigation on two age groups: 18 months–5 years and 6–12 years [58]. Eighteen months is an age when competent wheelchair driving skills have been reported to emerge, between 5 and 6 years is often a transition time for beginning school and after 12 years is typically the transition to adolescence. A five-member advisory committee (representative of the sample) pilot tested the survey, with revisions made based on co-authors’ and advisory committee’s feedback. Participants received an email inviting them to participate in the fourth round 1 week prior to survey commencement. They indicated their consent by activating the personalised survey link, provided in another email sent the day the survey was initiated. A summary of the previous round’s results, along with survey questions and background information to assist participants with their decision-making, were included. Questions were organised similarly for the two age groups of children. This survey was available online 24 h/day for a 3-week period and was designed to take less than 1 h to complete. Reminders to encourage completion were emailed after 1 and 2 weeks. In preparation for the fourth round, a systematic review of participation tools in the paediatric rehabilitation literature (to January 2013) was conducted with 22 tools identified for consideration. Tools were excluded from consideration if less than 85% of their items did not relate to participation, or if they addressed elements that were not identified as

Paediatric power mobility participation tools

Identifying important elements to measure participation in everyday life

3

Round One Socio-demographic information Identification of important elements for measuring participation

Round Two Summary of Round One results Confirmation of important elements for measuring participation

Round Three Summary of Round Two results Ranking top 10 important elements that reached consensus for each of two groups

Round Four Identifying suitable participation tools

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DOI: 10.3109/17518423.2015.1004763

Summary of Round Three results Description of 13 paediatric participation tools under consideration Identification of suitable participation tools, matched against top ranked elements Familiarity with participation tools under consideration Agreement with considering tools for inclusion in measurement toolkit

Figure 1. Four round modified Delphi survey process for identifying and reaching consensus on important elements to measure participation in everyday life for children who need or use PM, and the participation tools that address these elements.

third-round priorities. A comparison was made of candidate tools’ reported characteristics (from the literature) that met the top-ranked important elements from the third round. We chose to limit the number of tools under consideration to focus on measures that demonstrated high concordance with the important elements (selected by consensus through the previous Delphi rounds) and reduce respondent burden [65]. Descriptive information about each tool under consideration was provided to participants including: name of tool; intended ages for use; intended respondent(s); settings evaluated; number and examples of items; objective and/or subjective dimensions evaluated (number, frequency, satisfaction, importance); supports and barriers to participation; brief description of scoring and reported administration time; and how the tool aligned with the top-ranked consensus elements for each age group established previously. A chart enabled comparison of all tools under consideration for each age group using the top-ranked participation elements. In addition, this chart included ratings of measurement properties using the McMaster Outcome Measure Rating Form [66]. The McMaster Outcome Measure Rating Form [66] has been used in other systematic reviews of measurement tools [25, 67] and includes scoring criteria to evaluate internal

consistency, inter-rater and test–retest reliability, content and construct validity and responsiveness. To be transparent with decision-making, a third chart listed tools that were excluded from consideration along with a brief explanation of reasons for exclusion. A reference list for all tools was provided to enable those interested to seek further information. Participants were instructed to indicate their degree of familiarity with each of the tools under consideration along with their degree of agreement that the tool be included in a participation measurement toolkit. Response options for indicating familiarity included a four-point ordinal scale ranging from 1 (very familiar, used several times) to 4 (not heard of it until now). The response options for indicating agreement used a five-point Likert scale ranging from 1 (strongly agree) to 5 (strongly disagree). Participants were given the opportunity to provide comments on the tools and the selection process within text boxes. Data analyses Descriptive statistics were calculated for each age group across all study variables. Consensus was set a priori as480% agreement [9, 62, 63].

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Table 1. Socio-demographic characteristics of participants in Round 4 (n ¼ 70/74 from Round 1).

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Parents (n ¼ 13/14) Sex Male Female Age (in years) 20–29 30–39 40–49 50–59 60–65 Region North America South America Australasia Asia Middle East Europe Occupational Therapist Physical therapist Sex of Children Male Female

Parent drop out (n ¼ 1/14)

Clinicians (n ¼ 39/40)

Clinician drop out (n ¼ 1/40)

Researchers (n ¼ 18/20)

Researcher drop out (n ¼ 2/20)

Total (n ¼ 70/74)

Total drop out (n ¼ 4/74)

3 10

1

2 37

1

1 17

2

6 64

4

0 3 10 0 0

1

2 9 17 7 4

1

0 2 10 2 4

2

2 14 37 9 8

4

13

1

25 1 2 0 3 8

1

8 0 3 1 0 6

1

46 1 5 1 1 14

3

25 14

1

10 8

2

35 22

3

12 1

1

1

1

Abbreviations: n ¼ sample size.

Results Of the 74 stakeholders who participated in the initial Delphi round [58], 70 (95%) responded to the invitation to complete the final round of consultation. Participants included 13/14 (93%) parents, 39/40 (98%) clinicians and 18/20 (90%) researchers. Of the 70 respondents, 1 parent, 2 clinicians and 3 researchers submitted incomplete surveys. Table 1 describes the socio-demographic characteristics of participants in this round. From the 22 tools identified in the literature, no single tool addressed all elements deemed important to measure for each age group (i.e. priorities from third-round) [58]. Table 2 presents the 13 tools under consideration [1, 34, 41, 43–46, 48–50, 52–54]. All met the highest-ranked element of participation (evaluating participation in a combination of settings) and addressed at least 2 of the remaining highest ranked elements for each age group (5 elements in total for the younger age group and 7 elements in total for the older group). Table 3 provides a comparison of the tools under consideration for those in early childhood (most promising tools [44, 46, 48, 54]), while Table 4 provides a comparison of the tools under consideration for those of school age (most promising tools [1, 43, 44, 48, 54]). Appendix A summarises the nine tools not selected for consideration [32, 33, 35, 39, 40, 42, 43, 47, 51, 55]. Figure 2 summarises participants’ familiarity with the 13 tools under consideration. The COPM [54] was most familiar to our panellists, with the SFA [41] and then the CAPE [43] following next. Figure 3 presents the degree of agreement for each tool being considered for inclusion in the proposed toolkit. None of the tools reached consensus for being included in the toolkit for the younger group and only the PEM-CY [44] reach consensus for school-aged children. The three tools with the highest agreement in the early childhood

group were PACS, [48], COPM [54] and PEM-CY [44]. The three tools with the highest agreement in the school-age group were PEM-CY [44], COPM [54] and CAPE [43]. The PEM-CY [44] and COPM [54] had the highest agreement among participants across both age groups.

Discussion An online Delphi survey with an expert panel of parents, therapists and researchers nominated suitable tools for measuring key elements of participation in children who use PM. The selection of tools was based on how each matched important elements for measuring participation, as determined in earlier Delphi rounds [58]. Of the 22 tools identified in a literature review of participation tools for children with mobility limitations, 13 tools matched elements of participation deemed important to measure by the panel. No single tool met all elements deemed important to measure, however, four tools addressed at least three of the most important elements for the early childhood group, whereas, five tools addressed at least three of the most important elements for the school age group. Although no tools reached consensus for inclusion in a participation toolkit for the younger group, one tool – the PEM-CY [44] – achieved over 80% consensus for inclusion in a toolkit for school-aged children. Considering the complexity of measuring participation [5, 6, 13, 14, 21, 38] researchers have suggested consensus building as a way to move forward in understanding the measurement requirements for specific populations [60, 61], including individuals who use mobility devices [68]. Others recognise that a knowledge gap exists concerning the participation of children and youth with severe disabilities [13, 23]. Our research has established consensus on important elements to measure participation for children who use PM (typically including those with severe disabilities [1]), and identified

58 items (short form) Accomplishment 10 pt scale Amount of assistance 4 pt scale Parent satisfaction 5 pt scale

48 items, including three parent identified Diversity # items answered yes Frequency 7 pt scale (total frequency/actual # participated in) Intensity 7 pt scale (total frequency/total # activities listed) Up to 5 goals related to self-care, productivity or leisure Importance 10 pt scale Satisfaction 10 pt scale

25 items Child’s perceived competence 4 pt scale* Child’s perceived importance 4 pt scale* *Can use 2 pt scale for younger children or those with intellectual disabilities 34 items + parent’s importance & satisfaction performance # items

5–13 years

2–5 years, 11 months

Less than 8 years (for parent responder) 8 years or older (for child responder)

6–17 years

6–11 years

Assessment of Preschool Children’s Participation (APCP) [45]

Canadian Occupational Performance Measure (COPM) [54]

Child Occupational Self Assessment (COSA) [49]

Children Helping Out: Responsibilities Expectations

Test items and scoring

Assessment of Life Habits (LIFE-H) [1]

Measurement tool

Age of children evaluated

Table 2. Participation tools considered.

Home School Community

Home Community

Could be home, school, community, depends on client

Home School Community

Home

Parent-report

Semi-structured interview with child &/or parent

Child-report Paper & pen format* vs card sort *(text format vs stars & happy faces for anchors on rating scale)

Parent-report

Settings evaluated

Parent interview

Source of participation information Reliability ratings: Internal consistency E Inter-rater reliability [na] Test–retest reliability E Validity ratings: Content validity: E Construct validity: A Responsiveness: A Reliability ratings: Internal consistency P-E Inter-rater reliability [na] Test–retest reliability [na] Validity ratings: Content validity: E Construct validity: A Responsiveness: [na]

Measurement properties McMaster OMRF ratings* E ¼ excellent A ¼ adequate P ¼ poor [na] ¼ no evidence found

Reliability ratings: Internal consistency E Inter-rater reliability 480% agreement with parent goals Test–retest reliability numerous studies cited Validity ratings: Content validity: E Construct validity: E Responsiveness: E Reliability ratings: Internal consistency E Inter-rater reliability [na] Test–retest reliability [na] Rasch Analyses confirmed hierarchical structure Validity ratings: Content validity: A Construct validity: E Responsiveness: [na] Reliability ratings: Internal consistency E Inter-rater reliability [na] Test–retest reliability A-E

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(continued )

Not reported

30 min

10–15 min

30–40 min

30–45 min

Reported time for administration

DOI: 10.3109/17518423.2015.1004763

Paediatric power mobility participation tools 5

6–21 years

4–6 years

7–13 years

6–9 years (KPP) 9–12 years (PTP) 13–21 years (ALIP)

Children’s Assessment of Participation and Enjoyment (CAPE) [43]

Children’s Participation Questionnaire (CPQ) [46]

Frequency of Participation Questionnaire (FPQ) [34]

Pediatric Interest Profiles (PIP) [53] including [Kid Play Profile (KPP), Preteen Play Profile (PTP), Adolescent Leisure Interest Profile (ALIP)]

and Supports (CHORES) [50]

Measurement tool

Age of children evaluated

Home School Community

Home Community

Child report

Home School Community

Parent-report

Parent interview

Home Community

Settings evaluated

Child-report (paper & pen format or interview)

Source of participation information

Reliability ratings: Internal consistency [na] Inter-rater reliability [na] Test–retest reliability [na] Validity ratings: Content validity: P Construct validity: P Responsiveness: [na] KPP Reliability ratings: Internal consistency E Inter-rater reliability [na] Test–retest reliability P-E Validity ratings: Content validity: A Construct validity: [na] Responsiveness: [na]

Reliability ratings: Internal consistency P-A Inter-rater reliability na Test–retest reliability A-E Principal Component Analysis to determine domains Validity ratings: Content validity: E Construct validity: E Responsiveness: [na] Reliability ratings: Internal consistency A-E Inter-rater reliability [na] Test–retest reliability E Validity ratings: Content validity: A Construct validity: A Responsiveness: [na]

Validity ratings: Content validity: E Construct validity: A Responsiveness: [na]

Measurement properties McMaster OMRF ratings* E ¼ excellent A ¼ adequate P ¼ poor [na] ¼ no evidence found

10 min reported for 30-item pilot version of KPP

Not reported

Not reported

30–45 min

Reported time for administration

D. A. Field et al.

KPP 50 predetermined items + 5 items child identified PTP 59 predetermined items + 5 items child identified Participation # items answered yes With whom 3 pt scale

44 items, including 5 parent identified Diversity # items answered yes Intensity 6 pt scale Independence 6 pt scale Enjoyment 6 pt scale Parent’s satisfaction 6 pt scale 14 items Frequency 6 pt scale

answered yes assistance 7 pt scale parent’s importance 6 pt scale + open ended question parent’s satisfaction 6 pt scale + open ended question 55 items Diversity # items answered yes Intensity 7 pt scale (total frequency/total # activities listed) Location 6 pt scale With whom 5 pt scale Enjoyment 5 pt scale

Test items and scoring

Table 2. Continued

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19 items Degree of difficulty participating 6 pt scale

85 items Participation 6 pt scale Involvement 10 pt scale Discussion of importance, frequency & parent’s satisfaction Discussion of barriers & facilitators 6 items for Part I Participation Participation 6 pt scale 21 items for Part II Task Supports Assistance & adaptations 4 pt scale

8–20 years

3–6 years

5–12 years

Paediatric Community Participation Questionnaire (PCPQ) [52]

Preschool Activity Card Sort (PACS) [48]

School Function Assessment (SFA) [41]

Home School Community

Home Community

Home (Pre) School Community

School

Parent-report

Child interview Face to face or telephone administration

Semi-structured interview with parents; uses cards with photos of specific activities

Teacher or therapist report

PTP Reliability ratings: Internal consistency A Inter-rater reliability [na] Test–retest reliability P-E Validity ratings: Content validity: A Construct validity: [na] Responsiveness: [na] Reliability ratings: Internal consistency A-E Inter-rater reliability [na] Test–retest reliability P-E Validity ratings: Content validity: A Construct validity: A Responsiveness: [na] Reliability ratings: Internal consistency E Inter-rater reliability [na] Test–retest reliability [na] Validity ratings: Content validity: A Construct validity: A Responsiveness: [na] Reliability ratings: Internal consistency [na] Inter-rater reliability [na] Test–retest reliability [na] Validity ratings: Content validity: E Construct validity: A Responsiveness: [na] Reliability ratings: Internal consistency E Inter-rater reliability [na] Test–retest reliability E Validity ratings: Content validity: E Construct validity: A Responsiveness: A

McMaster OMRF ¼ McMaster Outcome Measure Rating Form [66]; pt ¼ point; # ¼ number; & ¼ and; + ¼ plus. *Ratings based on evidence as of January 2013.

25 items Frequency 8 pt scale Involvement 5 pt scale Desired change 6 pt scale Supports & barriers 3 & 4 pt scales

5–17 years

Participation and Environment Measure for Children and Youth (PEM-CY) [44]

Enjoyment/interest 3 pt scale *Competency 3 pt scale *Frequency 3 pt scale *For PTP only

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Not reported

Not reported

5 min

20–25 min

DOI: 10.3109/17518423.2015.1004763

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Table 3. Comparison of tools under consideration for children 18 months to 5 years of age. Top ranked elements for children 18 months to 5 years (in descending order)

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Participation in a combination of settings (e.g. home & community) is most critical A combination of family participation and child participation is most critical The child’s engagement in participation is most critical Barriers and facilitators of participation are critical The child’s enjoyment of participation is most essential Total number of top ranked elements addressed

APCP

LIFE-H (social roles)

possible

3

3

possible

3

3

X

X

X

X

X

X

Part II only

X

X

X

X

3/5 possible (depends on client)

2/5

2/5

1/5

PEM-CY

PACS

CPQ

COPM

3

3

3

3

3

3

3

3

3

3

X

3

3

X

X

X

3

4/5

4/5

3/5

X 3

possible

SFA (Part I & II only) X

school only

3 Element addressed in tool; X Element not addressed in tool. PEM-CY ¼ Participation and Environment Measure for Children and Youth [44]; COPM ¼ Canadian Occupational Performance Measure [54]; PACS ¼ Preschool Activity Card Sort [48]; CPQ ¼ Children Participation Questionnaire [46]; LIFE-H ¼ Assessment of Life Habits [1]; SFA ¼ School Function Assessment [41]; APCP ¼ Assessment of Preschool Children’s Participation [45].

tools that can now be validated with our population to learn more about how these children participate in everyday life. The idea of creating a toolkit [29, 69] of participation measurement tools is substantiated given that no single tool met all elements deemed important to measure by the panel. One may argue that developing a new tool that addresses all the important elements for our population might be a better option [23], however, this would take significant time, effort and funding. Furthermore, the number of elements addressed in one tool would need to be balanced against the complexity of the tool, and amount of respondent and administrative burden. A toolkit, on the other hand, offers a choice of tools depending upon the measurement purpose, as well as the ages, functional abilities and environmental contexts being considered for evaluation [69]. As our findings demonstrate, several tools met the top-ranked elements with each having a somewhat different focus to measuring participation along with influencing personal and environmental factors [13, 14, 56, 70, 71]. A toolkit might better handle the multidimensional nature of participation for children with physical disabilities [13, 14, 56] and for those benefiting from PM [11, 70, 71]. Only one tool – the PEM-CY [44] – achieved 80% consensus for inclusion in a toolkit. This recently developed tool addresses several elements deemed essential for children who use PM. The COPM [54], the second choice for both age groups, elicits information about what is meaningful from parents’ and children’s perspectives [6]. The importance of eliciting these subjective perspectives has been recognised in the literature [5, 6, 13, 15, 16] and confirmed by our expert panel, especially for school-age children. There may be several explanations as to why more tools did not achieve consensus. Many of the tools under consideration were not well known to participants. Although the COPM [54] was familiar to nearly half of the panellists, the others were not. This may offer an explanation as to why participation tools have not been used more readily for paediatric PM interventions [12, 13].

Several tools did not fully address the selected age range for each developmental stage; this was most notable for the early childhood group where only one tool [54] addressed the entire age range while three tools [1, 41, 44] were for 5 years old only. Similarly for the older age group, two [46, 48] were for 6 years only, while another [50] did not address the entire range. Perhaps because of the limited age range, panellists might have hesitated to agree with their suitability for toolkit inclusion. Another possible reason tools were not selected for the toolkit might have to do with their reported measurement properties. Evidence of psychometric rigour is extremely valuable when determining suitability of a specific tool for a specific population [10, 25, 26]. Although some tools [1, 41, 43, 54] under consideration have established measurement properties for use, others have limited evidence of acceptable levels of reliability and validity. It is crucial that tools have sound measurement properties for their intended application so one has confidence in interpreting measurement findings [10, 13, 16, 17, 69]. We recommend further testing of selected participation tools with our population before adopting them to evaluate the efficacy and effectiveness of PM interventions. Study limitations The success of a Delphi survey rests in the selection of an appropriate expert panel [62]. Our recruitment process yielded a panel with a diverse range of backgrounds, experiences and perspectives. It was expected that some might have limited knowledge of measurement tools. Although information was provided to assist in decision-making, the amount of information might have been too dense and the presentation method overwhelming, influencing their capacity (e.g. level of understanding or time available) to evaluate the relevance of information. However, the response and completion rates across stakeholder groups demonstrated their strong commitment to the tasks at hand. It may be that we were too conservative in selecting 80% as our level of agreement for

3 X

3 3 3 3

3 X

3 3 3 3 X 5/7 4/5

Participation in a combination of settings (e.g. home, school & community) is most critical

A combination of a parent’s report of the child’s participation and the child’s self report of participation is most essential

The child’s engagement in participation is critical

Barriers and facilitators of participation are critical

A combination of family participation and child participation is critical

A combination of objective and subjective information is critical

The child’s satisfaction with his/her participation is most essential

Total number of top ranked elements addressed

Total number of top ranked elements addressed (if delete # 6 & #7 to make similar to early childhood group)

4/5 possible

5/7 possible

possible

X

possible

possible

X

possible

possible

COPM

2/5

3/7

X

3

3

X

X

X

not school

CAPE

2/5

3/7

X

3X

3

X

X

X

3

LIFE H (social roles)

2/5

2/7

X

X

3

X

X

X

3

COSA X

2/5

2/7

X

3

3

X

X

X

home only

CHORES

2/5

2/7

X

X

3

X

X

X

3

FPQ

2/5

2/7

X

X

3

X

X

X

3

PCPQ

1/5

2/7

X

3

3

X

X

X

X

PIP

X

1/5

1/7

X

X

X

part II only

X

X

school only

SFA (Part I & II only)

3 Element addressed in tool; X Element not addressed in tool. Abbreviations: PEM-CY ¼ Participation and Environment Measure for Children and Youth [44]; COPM ¼ Canadian Occupational Performance Measure [54]; PACS ¼ Preschool Activity Card Sort [48]; CAPE ¼ Children’s Assessment of Participation and Enjoyment [43]; LIFE-H ¼ Assessment of Life Habits [1]; SFA ¼ School Function Assessment [41]; PIP ¼ Paediatric Interest Profiles [53]; COSA ¼ Child Occupational Self Assessment [49]; CHORES ¼ Children Helping Out: Responsibilities Expectations and Supports [50]; PCPQ ¼ Paediatric Community Participation Questionnaire [52]; FPQ ¼ Frequency of Participation Questionnaire [34].

4/5

5/7

X

PACS

PEM-CY

Top ranked elements for children 6–12 years of age (in descending order)

Table 4. Comparison of tools under consideration for children 6–12 years of age.

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Figure 2. Participant’s familiarity with participation tools under consideration. EC, early childhood age group; SA, school age group.

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Figure 2. Continued. PEM-CY COPM PACS CAPE

Measurement tools

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CPQ Most promising tools for Early Childhood (18 mo-5 yr)

LIFE- H SFA PIP

Most promising tools for School Age (6-12 yr)

COSA APCP Other potential tools

CHORES PCPQ FPQ 0%

10%

20%

30%

40%

50%

60%

70%

80%

90% 100%

Percentage agreement for inclusion in toolkit*

Figure 3. Percentage agreement of participation tools being considered for inclusion in a measurement toolkit.

inclusion in a toolkit, as other studies have used a broader range of thresholds for Delphi consensus [60, 61]. There may be debate about the nine tools not selected for consideration by the panel, depending on how one defines participation and classifies test items [2, 3, 5, 21]. However, in order to mitigate this, we shared excluded tools with panellists so these could be considered alongside nominated tools. There is a possibility that some tools were missed in the literature review due to the search strategy or inclusion criteria (e.g. restrictions of English language, peer-reviewed publications with evidence supporting use with children). The limited number of participation tools for the younger age group is acknowledged, but this is an area of recent and continuing development [13, 22, 45, 72]. One tool not considered because of its Dutch language, was the PART [19], a newly developed measure of parental perceptions of preschool children’s participation (for 2–5 years). In addition, this tool uses comparison with age-related peers [19], an

element not chosen by the panel as being important for children who use PM. Another tool, not published at the time of the Delphi survey – the Young Children’s Participation and Environment Measure (YC-PEM) [73] – might be worthy of future consideration as it is modelled similarly to the PEMCY [44] for children under 5 years [73]. We excluded adult participation tools designed for individuals with mobility limitations [15–17, 68] because they lacked psychometric evidence for use with children. Although their content and language might be too sophisticated for a paediatric population, how they handle the interaction between the individual, the mobility device and environmental demands may be relevant [15–17, 68]. These measures could be adapted and re-evaluated to determine their concordance with important elements of participation in children who use PM in future investigations. However, we elected not to include this alternative approach to make the identification and selection of candidate measures more manageable.

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Conclusions Six participation tools [1, 43, 44, 46, 48, 54] were identified as having potential for use with children aged 18 months to 12 years with mobility limitations who need or use PM. Selection of potential participation tools considered elements of participation deemed important to measure for these children [58]. This research advances the measurement of participation for children who use PM by stimulating discussion and contributing knowledge garnered by an expert panel regarding available participation tools. Further tool development and evaluation should be considered prior to investigations of effectiveness of PM in improving children’s participation in everyday life to impart confidence that the tools we are using with our population in fact provide desired information, are appropriate for use and have evidence of acceptable measurement properties with this population. Only one tool – the PEM-CY [44] – having the support of greater than 80% of the panel for inclusion in a measurement toolkit suggests a gap in tool options for children who use power mobility, especially for children in the early stages of development.

Acknowledgements The authors would like to recognise the contributions and commitment of our participants, as we would not have reached consensus without their dedication. We also value the efforts of all who assisted us with recruitment – there were many from around the globe assisting in identifying suitable candidates. We are grateful to the Rehabilitation Research Program at GF Strong Rehabilitation Centre as well as Sunny Hill Health Centre for Children in Vancouver BC for their assistance and support with staff and resources. We’d like to acknowledge the significant contributions of Mark Meheriuk, Rei Ahn and Jason Tong. Finally, a special thank-you to Lori Fullerton, Cathy Clancy-Benfey, Patricia Mortenson, Beth Ott and Brodie Sakakibara for their time and input as our advisory committee. Thanks also go to 21st Century SCIENTIFIC Inc. for use of their photo for recruitment (photo source http://www.wheel chairs.com/photos/narrowhframe/kidsandbike2.jpg).

Declaration of interest The authors report no declarations of interest. The first author acknowledges financial support from the Canadian Institutes of Health Research (CIHR) Fellowship Award, and the Canadian Occupational Therapy Foundation (COTF) Blake Medical Doctoral Scholarship Award. The authors alone are responsible for the content and writing of this paper.

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Appendix A Description of excluded tools with reasons for exclusion

Tools not selected for consideration in Round Four Activities Scale for Kids (ASK) [42] The ASK is a 30 item, self-report of a child’s capability (what he/she could do) or performance (what he/she usually does do) for those aged 5–15 years. (Parent report is also acceptable). Items include personal care, dressing, other skills, play, locomotion, standing skills and transfers. Activities could be performed in home, school or community settings. Some items may involve other family members. There are two versions: the ASKp (measuring performance) captures the frequency of an item over the last week rated using a 5 point scale ranging from all of the time to none of the time, + not applicable, while the ASKc (measuring capability) captures the degree of difficulty with item in last week rated using 5-point scale ranging from with no problem to I could not. This tool was not selected as 585% of items were related to participation. Child and Adolescent Scale of Participation (CASP) [35] The CASP is a 20 item, parent report of a child’s participation in home, school and community settings for children and youth aged 3–22 years. Some items ask about participation with others including family or friends, and there are open-ended questions to illicit information about barriers and facilitators to participation. This tool was not selected because the response scale compares the child or youth’s participation to same-aged peers only (ranging from age expected, somewhat limited, very limited, unable or not applicable); an element that was not selected as being important in the Round 1 survey. We also thought that the tool would be less likely to demonstrate change over a shorter period of time (e.g. before and after receiving a new power wheelchair). Functional Independent Measure for Children (Wee FIM) [40] The WeeFIM is an 18 item, therapist rating of observed behaviour or caregiver (e.g. parent or teacher) interview about the functional independence of children and youth. It was initially developed for those ages 6 months–7 years however it has been revised and extended from 7 to 18 years. Items include self-care, sphincter control, transfers, locomotion, communication, social cognition. Independence is rated on a 7-point scale ranging from complete independence to total assistance needed. This tool was not selected as 585% of items were related to participation. Goal Attainment Scaling (GAS) [55] GAS is an individualised method of rating accomplishment of goals. It is useful for all ages. Through a semi-structured interview with parent and/or child an individualised number of goals are established and measurement criteria set. Goals could include home, school or community settings and could address barriers or facilitators. Accomplishment of goals is rated using a 5-point scale from 2 to +2, with 0 being the desired outcome. This tool was not selected because it was not specifically related to participation, and it was reported to take a longer period of time to administer compared to others. Lifestyle Assessment Questionnaire (LAQ) [32, 33] There are two different versions of the LAQ. The LAQ-CP is a 46 item, parent report of impact of disability developed for children aged 3–10 years who have cerebral palsy. The LAQ-CP was developed first and includes items of physical independence, mobility, clinical burden, economic burden, schooling and social integration. The LAQ-G is a 53 item, tool developed for children 5–7 years who have a variety of diagnoses. The LAQ-G has slightly different items: communication, mobility, self care, domestic life, interpersonal interactions & relationships, community & social life. This tool was not selected as 585% of items were related to participation. Paediatric Evaluation of Disability Inventory (PEDI) [39] The PEDI is a 3-part tool developed for children aged 6 months–7½ years, although it can be used with older children if they have not reached a maximum functioning level. Part I evaluates 197 functional skills on 2-point scale with 1 being capable of performing item in most situations and 0 being unable or limited in capability to perform in most situations. Part II evaluates the amount of caregiver assistance on 20 items, rated on a 6-point scale ranging from independent to total assistance. Part III rates 20 items related to modifications required for performance using a 4-point scale ranging from no modifications to extensive modifications. Each part of the tool addresses three domains: self-care, mobility and social function. This tool was not selected as 585% of items were related to participation. (continued )

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Appendix Continued

Preferences for Activities of Children (PAC) [43] The PAC is a 55 item self report of a child’s preference for activities, designed for use with children and youth aged 6–21 years. It is a companion to the CAPE and represents the same categories of activities: formal and informal activity domains, as well as five different types of activities – recreational, social, active-physical, skill-based and self-improvement in home or community settings. The child/youth is asked to rate his/her preference for an activity based on a 3-point scale from I would really like to do to I would not like to do at all. If the child is unable to indicate their preferences a parent proxy is acceptable. Although child preference was one of the statements that reached consensus for the 6–12 age group in Round 2, it was not a highly ranked statement in Round 3. In addition, because the rating was on a 3-point scale of what the child would like to do, (instead of what his/she actually did) we thought the tool would be less likely to demonstrate change over a short period of time (e.g. before and after receiving a new power wheelchair). School Outcome Measure (SOM) [51] The SOM is a 28 item, therapist rating of children and youth aged 3–18 years who attend school. Assistance required is rated on a 6-point scale for selfcare and mobility items and 4-point scale for all other items. Items include self care, mobility, assuming student role, expressing learning behaviour. This tool was not selected as 585% of items were related to participation.

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Short Child Occupational Profile (SCOPE) [47] The SCOPE is a 25 item, therapist rating of areas of childhood occupation that impact participation for children and youth aged 2–21 years. The therapist uses a 4 point rates volition, habituation, communication & interaction skills, process skills, motor skills and environment. This tool was not selected as 585% of items were related to participation. + ¼ plus; e.g. ¼ example; & ¼ and; 5¼ less than; % ¼ percentage.