Item Bank Development for a Revised Pediatric Evaluation of Disability Inventory (PEDI) Helene Dumas Maria Fragala-Pinkham Stephen Haley Wendy Coster Jessica Kramer Ying-Chia Kao Richard Moed ABSTRACT. The Pediatric Evaluation of Disability Inventory (PEDI) is a useful clinical and research assessment, but it has limitations in content, age range, and efficiency. The purpose of this article is to describe the development of the item bank for a new computer adaptive testing version of the PEDI (PEDI-CAT). An expanded item set and response options were reviewed by clinician experts and examined at parent and clinician focus groups. Eleven parents participated in 32 cognitive interviews to examine content, format, and comprehension of items and responses. A set of 76 self-care, 78 mobility, and 64 social function items with pictures and a four- point “Difficulty” scale were developed. The PEDI’s Caregiver Assistance scale was replaced by a “Responsibility Scale” with 53 items. Content validity was established incorporating input from clinicians and parents. The new item bank covers a broad range of functional activities for children of all ages and abilities. Helene Dumas, MS, PT, and Maria Fragala-Pinkham MS, PT are affiliated with Franciscan Hospital for Children, Research Center, Boston, Massachusetts. Stephen Haley, PhD, PT, FAPTA, is affiliated with Boston University School of Public Health, Health & Disability Research Institute, Boston, Massachusetts. Wendy Coster, PhD, OTR/L, FAOTA, is affiliated with Boston University Sargent College of Health and Rehabilitation Sciences, Department of Occupational Therapy and Department of Physical Therapy and Athletic Training, Boston, Massachusetts. Jessica Kramer, PhD, OTR/L, and Ying-Chia Kao, MA, OTR, are affiliated with Boston Univeristy Sargent College of Health and Rehabilitation Sciences, Department of Occupational Therapy, Boston, Massachusetts. Richard Moed, is affiliated with CREcare LLC, Newburyport, Massachusetts. Address correspondence to: Helene Dumas, MS, PT, Franciscan Hospital for Children, Research Center, 30 Warren Street, Boston, Massachusetts 02135, USA (E-mail: [email protected]). 168 Physical & Occupational Therapy in Pediatrics, Vol. 30(3), 2010 Available online at http://informahealthcare.com/potp C 2010 by Informa Healthcare USA, Inc. All rights reserved. doi: 10.3109/01942631003640493 Phys Occup Ther Pediatr Downloaded from informahealthcare.com by Boston University on 02/10/12 For personal use only.
Transcript
Item Bank Development for a Revised PediatricEvaluation of Disability Inventory (PEDI)
Helene DumasMaria Fragala-Pinkham
Stephen HaleyWendy CosterJessica KramerYing-Chia KaoRichard Moed
ABSTRACT. The Pediatric Evaluation of Disability Inventory (PEDI) is a usefulclinical and research assessment, but it has limitations in content, age range, andefficiency. The purpose of this article is to describe the development of the item bank fora new computer adaptive testing version of the PEDI (PEDI-CAT). An expanded itemset and response options were reviewed by clinician experts and examined at parentand clinician focus groups. Eleven parents participated in 32 cognitive interviewsto examine content, format, and comprehension of items and responses. A set of76 self-care, 78 mobility, and 64 social function items with pictures and a four-point “Difficulty” scale were developed. The PEDI’s Caregiver Assistance scale wasreplaced by a “Responsibility Scale” with 53 items. Content validity was establishedincorporating input from clinicians and parents. The new item bank covers a broadrange of functional activities for children of all ages and abilities.
Helene Dumas, MS, PT, and Maria Fragala-Pinkham MS, PT are affiliated with Franciscan Hospitalfor Children, Research Center, Boston, Massachusetts.
Stephen Haley, PhD, PT, FAPTA, is affiliated with Boston University School of Public Health,Health & Disability Research Institute, Boston, Massachusetts.
Wendy Coster, PhD, OTR/L, FAOTA, is affiliated with Boston University Sargent College ofHealth and Rehabilitation Sciences, Department of Occupational Therapy and Department of PhysicalTherapy and Athletic Training, Boston, Massachusetts.
Jessica Kramer, PhD, OTR/L, and Ying-Chia Kao, MA, OTR, are affiliated with Boston UniveristySargent College of Health and Rehabilitation Sciences, Department of Occupational Therapy, Boston,Massachusetts.
Richard Moed, is affiliated with CREcare LLC, Newburyport, Massachusetts.Address correspondence to: Helene Dumas, MS, PT, Franciscan Hospital for Children, Research
Center, 30 Warren Street, Boston, Massachusetts 02135, USA (E-mail: [email protected]).
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Physical & Occupational Therapy in Pediatrics, Vol. 30(3), 2010Available online at http://informahealthcare.com/potp
KEYWORDS. Child, computer adaptive testing, computers, outcome assessment,Pediatric Evaluation of Disability Inventory, test development
The Pediatric Evaluation of Disability Inventory (PEDI) is a comprehensive func-tional assessment designed for use by physical and occupational therapists, as well asother rehabilitation and educational professionals. The PEDI is administered by struc-tured interview with the child’s caregiver(s) and/or via observation of the child. Theoriginal version of the PEDI measures self-care, mobility, and social function capabilityin daily activities with 197 items in three Functional Skills scales. The Caregiver Assis-tance scale includes 20 items that measure the amount of caregiver assistance providedwhen the child is performing multistep self-care, mobility, or social function activities.Standardized on a sample of 412 children between the ages of six months and 7.5 yearswho were typically developing, the PEDI can also be used to assess capability andperformance of older children if their functional abilities fall below that expected of a7.5-year-old child with no disability. Thus, the PEDI can be used for the determinationof eligibility for disability-related services (with norm-referenced standard scores) andfor evaluating change following intervention (with criterion referenced scores) (Haley,Coster, Ludlow, Haltiwanger, & Andrellos, 1992).
Since its publication in 1992, the PEDI has been used with children with a widevariety of disabling conditions (Danielsson et al., 2008; Dolva, Lilja, & Hemmingsson,2007; Dumas, Haley, Ludlow, & Rabin, 2002; Dumas, Haley, & Steva, 2002; Eisenberg,Zuk, Carmeli, & Katz-Leurer, 2009; E. Ho, Curtis, & Clarke, 2006; C. Ho & Karol,2008; Rodger et al., 2003; van der Net et al., 2008; Van Empelen et al., 2005; Verhooget al., 2008), in varied clinical settings (Ahl, Johansson, Granat, & Brogren Carlberg,2005; Daichman, Johnston, Evans, & Tecklin, 2003; Dumas, Haley, Ludlow et al.,2002; Novak, Cusick, & Lowe, 2007; Stiller, Marcoux, & Olson, 2003), and to evaluatesurgical (C. Ho & Karol, 2008; Nordmark et al., 2008; Van Empelen et al., 2005),pharmacological (Daichman et al., 2003; Lowing, Astrom, Oscarsson, Soderhall, &Eliasson, 2007; Moore et al., 2008; Scheinberg, O’Flaherty, Chaseling, & Dexter, 2001),and rehabilitation interventions (Casady & Nichols-Larsen, 2004; Daichman et al., 2003;Dumas, Haley, & Steva, 2002; Fragala-Pinkham, Dumas, Barlow, & Pasternak, 2009;Jones, McEwen, & Hansen, 2003; Kelly, MacKay-Lyons, Berryman, Hyndman, &Wood, 2008; Ketelaar, Vermeer, Hart, van Petegem-van Beek, & Helders, 2001; Knox& Evans, 2002).
Psychometric properties of the PEDI have been examined including: reliability (Berg,Jahnsen, Froslie, & Hussain, 2004; Erkin, Elhan, Aybay, Sirzai, & Ozel, 2007; Ha-ley et al., 1992; Nichols & Case-Smith, 1996), validity (Bourke-Taylor, 2003; Erkinet al., 2007; Feldman, Haley, & Coryell, 1990; Gannotti & Cruz, 2001; Haley, Coster,& Faas, 1991; Nichols & Case-Smith, 1996; Wright & Boschen, 1993; Ziviani et al.,2001), and responsiveness (Dumas, Haley, & Ludlow, 2008; Dumas, Haley, & Steva,2002; Haley et al., 1992). The “minimally important difference” (MID), the smallestdifference in score perceived as beneficial, has been established on the basis of clinicianreport for each of the six PEDI scales and is, on average, 11 points (Iyer, Haley, Watkins,& Dumas, 2003).
While the PEDI continues to be a clinical and research assessment used worldwide,it has limitations. With more than 200 items, it is time consuming to administer all threedomains for the Functional Skills and Caregiver Assistance scales, and thus, its use islimited in many practice settings (Custers et al., 2002). The other major limitations of the
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PEDI are that the normative scores cover a small age range (6 months to 7.5 years) andthe content may not be broad enough for children with minimal restrictions in activityor participation (Kothari, Haley, Gill-Body, & Dumas, 2003; McCarthy et al., 2002;Ostensjo, Bjorbaekmo, Carlberg, & Vollestad, 2006). The ideal functional measurewould cover a broad range of functional activities and content areas for children of allages and abilities, while at the same time minimizing respondent burden. Computeradaptive testing (CAT) has been proposed as an alternative to the current fixed formatof the PEDI to alleviate these limitations (Jette & Haley, 2005).
CAT uses a computer algorithm that selects questions from a very large set of items(item bank) that consistently scale along a continuum of low to high functional profi-ciency so that every test administration can be adapted to the unique ability level of thechild. All respondents answer the same first question in the middle of the ability range,and on the basis of the response to the first question, a score and confidence intervalare estimated. Then, the next optimal item is presented and a response is recorded.With administration of each subsequent item, the score is re-estimated along with aunique confidence interval, and the computer algorithm determines whether the stop-ping rule has been satisfied. If satisfied, the assessment ends. If not satisfied, new itemsare administered until the stopping rule is satisfied. The CAT program then displays theresults instantly. This allows for fewer items to be administered than with a fixed-formassessment and avoids the potential for gathering information on items irrelevant for aparticular child, while gaining precise information regarding an individual’s placementalong a continuum of functional ability. For example, if a parent indicates the childwalks up one flight of stairs without difficulty, questions about crawling up stairs wouldnot be asked as the computer-based algorithm would account for walking being a higherfunctional skill than crawling. Studies have highlighted the promise of CAT in pediatricrehabilitation (Coster, Haley, Ni, Dumas, & Fragala-Pinkham, 2008; Haley, Ni, Dumas,Fragala-Pinkham, 2009; Haley, Ni, Fragala-Pinkham, Skrinar, & Corzo, 2005; Haley, Ni,Ludlow, & Fragala-Pinkham, 2006; Haley, Raczek, Coster, Dumas, & Fragala-Pinkham,2005; Jacobusse & van Buuren, 2007; Tucker et al., 2009; Tucker et al., 2009).
The process for adapting the original PEDI to a PEDI-CAT has involved the devel-opment of new items to create an item bank in each of the three functional domainsof self-care, mobility, and social function and for a newly developed ResponsibilityScale. Two important methods for item bank development are focus groups and cog-nitive interviewing (Cella, Gershon, Lai, & Choi, 2007; Walsh, Irwin, Meier, Varni, &DeWalt, 2008). Focus groups help to determine both general themes and specific ideasof participants about particular issues, products, and/or services and can, thus, be usedto identify functional activities for new test items (Krueger & Casey, 2008; Walsh et al.,2008). Cognitive interviewing is a specialized form of structured individual interviewused to provide insights into the respondents’ thought processes as they read or hear andrespond to test questions (Willis, 2005). The primary goal of cognitive interviewing isfor test developers to know whether or not the respondents understand questions con-sistently, easily and as intended (Willis, 2005). The purpose of this article is to describethe process, including focus groups and cognitive interviewing, used to develop the itembank for a new computerized adaptive test version of the PEDI (PEDI-CAT).
METHODS
The process of developing an item bank for a new computerized adaptive test versionof the PEDI included two phases. Phase I, Development of New Items and Response
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FIGURE 1. Process for development of PEDI-CAT item bank.
Phase I-Development of New Itemsand Response Options
Phase II-Cognitive Testing for Item Revision and Finalization
Options, included generating an expanded set of items and corresponding response op-tions using a review of existing measures, expert review, and parent and clinician focusgroups. Phase II, Item Revision, included a series of cognitive interviews (Figure 1).The project team included three of the PEDI’s original authors, as well as two additionalphysical therapists, two additional occupational therapists, a nurse and a statistician. In-stitutional Review Board approval was obtained from the Franciscan Hospital for Chil-dren, Boston University Medical Center, and New England Institutional Review Boards,Boston, Massachusetts, USA. Clinicians and parents provided informed consent.
Phase I—Development of New Items and Response Options
A comprehensive review of more than 60 existing performance-based and stan-dardized and non-standardized pediatric and adult measures in the content domainsof self-care, mobility, and social function was conducted. Measures such as the Wee-Functional Independence Measure (Wee-FIM) (Msall et al., 1994), Pediatric Qualityof Life Inventory (PedsQL) (Varni, Seid, & Rode, 1999), Pediatric Outcomes DataCollection Instrument (PODCI) (Daltroy, Liang, Fossel, & Goldberg, 1998), Test ofGross Motor Development (Ulrich, 2000), Vineland Adaptive Behavior Scales (Sparrow,Domenic, Cicchetti, & Balla, 2009), and the Children’s Assessment of Participation andEnjoyment (CAPE) (King et al., 2004) were examined for content not contained in theoriginal PEDI, age equivalents, item wording, response option type (e.g., frequency,level of difficulty, amount of assistance), and number of response option points.
Self-care was defined as the ability of a child to carry out activities of daily livingsuch as eating, dressing, and grooming. Mobility was defined as the ability of a child tomove in different environments such as in their home (getting in and out of own bed) orin the community (getting on and off a public bus or school bus). Mobility items rangefrom the basic motor ability of rolling over to more advanced skills of jumping, running,or carrying heavy objects. Mobility using equipment such as a wheelchair or walkingdevice were also included in this domain. Social function was defined as the ability tolive with others in a community and participate in one’s family and culture. This wouldinclude skills needed to function safely and for effective social exchange. We recognized
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that if we wanted to extend the upper age range of the PEDI, then content areas relevantfor older children such as cooking, managing health needs, and time management hadto be addressed.
The project team developed an expanded set of items for the functional domainsof self-care, mobility, and social function and revised the response options from atwo-point (unable/capable) to a four-point scale. In addition, the project team replacedthe Caregiver Assistance scale with a ‘Responsibility Scale’ to assess the extent towhich a young person is managing life tasks that enable independent living. This newscale indicates the amount of responsibility a parent and young person each take forcarrying out particular multistep tasks versus the existing scale that measures how muchassistance is needed.
The expanded set of items were sent via electronic mail to 12 physical and occupa-tional therapists active in clinical practice and having expertise in child development,measurement of children’s daily activities in home and community contexts, instrumentdesign, validation, and score construction. In addition, these experts were experiencednational and international users of the PEDI. Via electronic questionnaire, we collectedfeedback regarding content coverage, content relevance, and individual item clarity.
Focus groups were also held with parents to review the expanded item bank. Con-venience sampling, by means of personal contacts, was used to recruit six parents ofchildren (ages infant through 21 years) with disabilities, who were English speaking, toparticipate by telephone in one of the two focus groups. During the group conferencecalls, parent participants were asked to provide feedback on the expanded set of PEDIitems and response options that they were provided via e-mail. Parents were asked ifthere were other important functional skills in each of the three content domains thatshould be addressed. Parents were also asked if items were written clearly for parentsto understand and respond to. For the response options, parents were asked: (a) Arethe definitions of each rating clear? (b) Do the ratings reflect meaningful distinctionsin management of daily life tasks? (c) Will parents be able to make these distinctionsin their child’s management of daily skills? and (d) Do you have a preference for a“Difficulty” (respond with how difficult) versus an “Easy” (respond with how easy)scale? Calls were facilitated by one member of the project team who took notes torecord the parents’ input. In addition, telephone calls were audiotaped. Each call lastedapproximately 60 minutes. Participants provided written informed consent prior to thecalls and were provided with an honorarium by mail following the call. Table 1 providesa description of the participants.
Two focus groups of three and six clinicians were held at a local pediatric hospital.Clinicians with four or more years of experience evaluating children with disabilitiesand who were English speaking were recruited through personal contacts. Each grouplasted up to 90 minutes and was led by two facilitators from the project team experiencedin conducting focus groups. Clinicians were provided with the expanded list of itemsand asked to respond to the following questions: (a) Are there other important functionalskills in each domain that should be addressed? (b) Are the items written clearly forparents and/or clinicians to understand and respond to? and (c) Given the expandedcontent of the item bank, what do you think would be the clearest and most appropriatetitle for each scale? For the response options, clinicians were asked: (a) Are the defini-tions of each rating scale point clear? (b) Do the rating scale points reflect meaningfuldistinctions in management of daily life tasks? (c) Will parents and/or clinicians be ableto make these distinctions in a child’s management of daily skills? and (d) Do you havea preference for a “Difficulty” (respond with how difficult) versus an “Easy” (respond
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TABLE 1. Demographics of Participants
Phase I—Parent Focus Groups (n = 6)Relationship to child 100% MothersRace/ethnicity 83% White/Non-HispanicChildren’s ages 3–12 yearsChildren’s diagnoses Joubert’s Syndrome/Blindness
Cerebral Palsy with HemiplegiaMitochondrial DisorderAsperger’s Syndrome (n = 2)Myelomeningocele
with how easy) scale? The discussion was audiotaped and the facilitators took notesthroughout. The clinician participants provided written informed consent before partic-ipation and were provided with an honorarium following the group. Table 1 provides adescription of the participants.
Phase II—Item Revision
Following additions and revisions to the expanded item bank based on the Phase Ifeedback, a convenience sample of 11 parents (six parents of children with disabilitiesand five parents of children without disabilities) were recruited through personal contactsand the clinical services departments at a pediatric hospital to participate in cognitiveinterviews. To be eligible for inclusion, participants had to be the parent of a child(infant to 21 years of age), over 18 years of age themselves, and able to speak andread English. Once the participant was identified as having met the eligibility criteriaand provided informed consent, the cognitive interviewing session(s) were scheduled.Because of the large number of items to be tested, each parent was eligible to participatein up to three interviews and a total of 32 interviews to examine content, format, andcomprehension of items and responses were completed. Table 1 provides a descriptionof the participants.
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Project staff had been trained in previous projects to conduct cognitive interview-ing through collaboration with the Center for Survey Research at the University ofMassachusetts, Boston. Cognitive interviewing sessions were conducted individually ina quiet, distraction-free environment with adequate space for the interviewer to recordnotes. Procedures for cognitive interviewing generally include asking the respondentsto read a test item and to verbally explain to the interviewer what they understood theitem to mean (e.g., “In your own words, please describe what this question is asking.”).Cognitive interviewers often use tools such as directed probes to help explore specificdefinitions or concepts within a test item. For example, the probe “What do you thinkthey mean by childproof medicine containers.” may be used for the item, “Opens child-proof medicine or vitamin containers.” Cognitive interviewers also use “think aloud”strategies in which respondents read an item and verbally explain their thought pro-cess while contemplating the meaning of the test item. In addition, the test item’sresponse option can be simultaneously probed (e.g., “For this item, you responded,‘hard’. Can you describe what ‘hard’ means to you?”). The interviewer can also observeand record the amount of time a respondent considers a question and the respondent’snonverbal response to the item (e.g., facial expression) to gather data about each testitem.
Parents were instructed in the procedures and reminded not to focus on answer-ing the question as it relates to their own child/children but rather to discuss whatthey understood the item to mean, their opinion on the wording of the item andwhether the response choices were adequate and appropriate for the question. Par-ents were reminded of these purposes throughout the interview. Notes were takenthroughout the interview by the interviewer and included the parents’ thoughts, ques-tions, and/or concerns about the items. Each interview consisted of examining ap-proximately 30 items and lasted up to 60 minutes. All interviews were conducted inEnglish and an honorarium was provided to all participants at the conclusion of eachinterview.
After each cognitive interview was completed, the interviewer typed the item-specificfeedback into a master spreadsheet with all items. After 15 interviews, at least one parenthad provided feedback on each item and all feedback was reviewed by the project team.All items (including newly added line drawings for the self-care and mobility items) wereretested in a second set of 17 cognitive interviews with additional parent participants,which allowed all unchanged items to be tested once more or revised items to be testedat least twice in their revised format. Final revisions to the items were made followingthe second round of interviews.
Data Analysis
For Phase I, data analysis was conducted at a series of project team meetings byanalyzing the responses to the questions specific to the items and the questions specificto the response options provided by the expert clinicians and in the parent and clinicianfocus groups. General themes were identified and revisions for individual items wereconsidered. For Phase II, after each round of cognitive interviews, the project team com-piled a list of item- and domain-specific feedback. During this process, we categorizedthe item feedback in order to identify common issues and the need for item-specificrevisions.
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RESULTS
Phase I—Development of New Items and Response Options
The responses from clinicians and parent and clinician focus groups yielded similarpositive feedback on domain content and concerns about item redundancy, clarificationof content, item wording and response options. All participants indicated the itemsencompassed a wide range of daily activities and the clinicians also indicated thatthe items encompassed a much wider range of functional activities than the originalPEDI. The feedback yielded valuable information for clarifying content with suggestedformatting and changes in wording of items. Revisions to quantify capability or clarifyexpectations were made (e.g., “thoroughly” was added to “Wipes nose with a tissue”).All participants indicated that separate items for wheelchair and walking aid use wereneeded in the mobility domain. All participants responded very favorably to the conceptand content of the Responsibility Scale.
In general, parents and clinicians preferred the use of a “Difficulty Scale” to an“Easy Scale” for responding to items, as it was reported to be a more typical way thatparents and clinicians report on children’s function. All were in favor of expanding thescale to four responses from the two response options (unable/capable) of the originalPEDI Functional Skills scales. All participants reported that the distinctions between the“difficulty” responses were clear and all participants reported favorably on the responseoptions for the Responsibility Scale. On the basis of the feedback from Phase I, a setof 76 self-care, 104 mobility (including walking aid and wheelchair items), 69 socialfunction, and 50 responsibility items were prepared for cognitive interviewing.
Phase 2—Item Revision
The results of the cognitive interviews indicated that changes were needed for itemclarity and comprehension including item wording, the addition of examples, clari-fying ambiguous items, and adding qualifiers (e.g., time, distance). In addition, itemredundancy and domain fit were addressed. Parents participating in the first round ofinterviews strongly suggested the addition of pictures to assist with comprehension ofitem meaning. Table 2 provides examples of common issues identified and the suggestedchanges. In addition, parent feedback indicated that the “difficulty” response option wastoo wordy; parents had to re-read the response choices for each item. Lastly, we receivedfeedback on the presentation of the items indicating that the response options shouldaccompany each item on each page and that key words in the response options shouldbe underlined or bolded. On the basis of the results of the cognitive interviewing, thefinal item set included 76 self-care, 105 mobility (including walking aid and wheelchairitems), 64 social function, and 53 responsibility items. Table 3 provides examples offinal items and Table 4 provides the final response options.
DISCUSSION
This PEDI-CAT is being designed to expand content within each domain, whilereducing respondent burden. The content of the PEDI-CAT is intended to measurefunctional skills in the domains of self-care, mobility, and social function as well asassess the extent to which a young person can manage life tasks independently. Items
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TABLE 2. Examples of Parent Concerns and Suggested Changes During CognitiveTesting
Problematic item(s) Suggested change(s)
Item clarity Prints or writes own name legibly Specify first and/or last nameOpens cardboard food boxes Specify if box is sealed or has
already been openedItem wording Stirs to mix up foods when cooking Change “foods” to “ingredients”
Recognizes numbers on everydayobjects such as a clock or phone
Remove “everyday objects such as ”
Need for (additional) examples Can handle stimulating situationslike a shopping mall for 1–2 hourswithout losing control
Add another example such asbirthday party to broadenapplicability
Fixing snacks and simple meals thatdo not involve cooking (includes:identifying what is available to eat;selecting the needed food andutensils; preparing by mixing,pouring, etc.)
Add examples such as cereal and/ora sandwich
Ambiguous items Rides tricycle or bicycle with trainingwheels
Separate into two items
Walks and carries a full glass orplate without spilling
Separate into two items
Need for qualifiers Stands in a moving vehicle (bus,train, trolley, boat/ferry)
Stands while holding on in a movingvehicle (bus, train, trolley,boat/ferry)
Item redundancy Making healthy choices to maintainhealth and well-being (includes:nutrition, exercise, avoidingsubstance use or exposure toenvironmental hazards) andEating and drinking appropriatefoods to maintain health andenergy (includes: regulatingamount of food eaten, avoidingundernourishment anddehydration
Remove “nutrition” from first itemand focus on other lifestylechoices
Domain fit Lets home, school, or job know whenhe or she will be late or absent
Move from social function toresponsibility scale
Item Comprehension–Need forPictures
Fastens belt buckle Add picture to indicate pants buckleand not car seat belt
Sits on infant playground swing whileswing is pushed
Add picture to show what an infantswing looks like
now represent functional skills throughout the age range from birth to 21 years of age.For instance, in the self-care domain, the item “Puts on socks” remains from the PEDI;however, a new item “Puts on tights or pantyhose” has been added that is applicable toolder girls. Additional self-care items for older children and young adults include “Putson and ties a tie”, “Shaves face (or legs) using electric or safety razor”, and “Openschildproof medicine or vitamin containers”. In the PEDI, items in the social functiondomain pertaining to safety include “Knows not to accept rides, food or money fromstrangers” and “Crosses busy street safely without an adult”. Here we have expanded
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TABLE 3. Examples of Final Items in all Domains
Domain Item
Self-care Removes a single bill from wallet
Self-care Inserts laces into sneakers or boots
Self-care Tightens loose screws using a screwdriver
Mobility Sits on infant playground swing while swing ispushed
Mobility Gets on and off an adult-sized toilet
(Continued on next page)
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TABLE 3. Examples of Final Items in all Domains
Domain Item
Mobility Moves across monkey bars
Mobility–walking aid Opens and closes door to enter and exit home, while walking with walking aid(e.g., cane, crutches, walker)
Mobility–wheelchair Goes up and down curbs with wheelchair
Social Function Participates in role-playing activities such as playing school or acting out famouscharacters
Social Function Greets new people appropriately when introducedSocial Function Writes short notes or sends text messages or emailResponsibility Putting items and objects away after use
Includes: knowing where objects are stored, organizing belongings and objects sothey can be found when needed
Responsibility Planning and following a weekly schedule so all activities get done when neededIncludes: identifying what needs to be done during a week, determining how much
time each activity will need and when it should be done, carrying out plan,making necessary adjustments due to unexpected delays or events
Responsibility Buying clothing at a store, from a catalog or onlineIncludes: purchasing clothing, including outerwear and undergarments
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TABLE 4. Final Response Scales
Difficulty ScaleTo be used for Self-care, Mobility, and Social Function scales� Unable = Cannot do, does not know how or is too young.� Hard = Does with a lot of help, extra time, or effort.� A little hard = Does with a little help, extra time or effort.� Easy = Does with no help, extra time or effort, or child’s skills are past thislevel.� I do not know.Responsibility Scale� Adult/caregiver has full responsibility; the child does not take anyresponsibility.� Adult/caregiver has most responsibility and child takes a little responsibility.� Adult/caregiver and child share responsibility about equally.� Child has most responsibility with a little direction, supervision or guidancefrom an adult/caregiver.� Child takes full responsibility without any direction, supervision or guidancefrom an adult/caregiver.
the items to include content applicable to younger children such as this, “Keeps unsafeobjects and household materials out of mouth”.
Participants confirmed that the items included in each functional domain were currentand meaningful in the context of modern daily life. The expanded content includes itemsrelated to use of a computer, the Internet, videogames, automated teller machines (ATM),and cell phones, most of which were not applicable in 1992. In the mobility domain,there remain items related to stair climbing with and without a handrail, but itemsrelated to escalator use, climbing up the ladder of a slide, and walking up and downbleacher stairs in a gym or stadium have been added. In the social function domain,new item content includes friendship (e.g., Maintains friendships that involve give andtake, compromises, and loyalty), functional reading and writing (e.g., Prints first andlast name legibly), behavior regulation/behavior management (e.g., Accepts advice orfeedback from a teacher, coach, or boss without losing temper), and interaction withadults and people in authority (e.g., Uses language appropriate to the situation such asformal language at a job interview or informal language when hanging out with friends).Additional items have been added to expand the age range and content in areas suchas functional communication, interaction with peers, time orientation, safety, problemsolving, and play with objects.
The Responsibility scale was created to meet the growing need for assessmentsthat can plan for and track a young person’s growing independence and successfultransition to adulthood. Where the Caregiver Assistance scale measured amount ofassistance, the Responsibility scale measures the extent to which the parent or childtakes responsibility for managing complex, multistep life tasks. For example, the item“Traveling safely within the community” includes identifying and following a safe route;using available methods of transportation (e.g., walking, driving, public transportation).This is a multistep functional task aimed at older children and adolescents that requirescapability in multiple functional domains. All items in the Responsibility scale combinegross and fine motor, cognitive, and social skills in one multi-step task that is relevantfor independent daily living or life situations.
Using focus groups to inform the item development process allowed us to get inputfrom the stakeholders, the parents and clinicians, who will be using the PEDI-CAT.
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180 PHYSICAL & OCCUPATIONAL THERAPY IN PEDIATRICS
The children of the parent participants had a wide variety of diagnoses, helping us toincorporate content for children with physical, intellectual, and behavioral disabilities.The use of cognitive interviewing was particularly critical for the development of theitems, since fewer items are administered in a CAT than in a traditional assessment, andthus, each item must be interpreted with as much clarity and consistency as possible.Cognitive interviewing participants assisted in making the items understandable andeasy to respond to. The addition of pictures to the self-care and mobility items isanticipated to be a valuable addition to the PEDI-CAT adding to reliability, validity, andaccuracy of results. The research team determined, however, that it would be difficult todepict the social function and responsibility items in a line drawing, so drawings werenot created for these domains.
During the process of developing an expanded item bank, we employed severalstrategies to enhance the cross-cultural validity of the PEDI-CAT. Invited internationalusers were asked to participate as expert clinician reviewers and provide input on whetherthere were any important items missing in the content domains. We strived to use lessculturally specific examples in the items for the PEDI-CAT. For example, we avoideddescribing whether children required a specific tool (e.g., fork) for specific tasks. Wealso hope that providing illustrations for the self-care and mobility domains will alsoallow international users to translate PEDI-CAT items more easily. As the PEDI-CATis translated into different languages, cross-cultural validation will be necessary andnorms modified as applicable.
This research has several limitations. First, the number of cognitive interviews peritem may be considered small. While we received feedback on each item from two tothree parents, it has been suggested that new items be tested at least 10 times (Willis,2005). On the basis of the consistent feedback from respondents and the previous clinical,measurement design and cognitive interviewing experience of the project team, we feltcomfortable proceeding with this limited number of cognitive interviews. Our parentand clinician focus group participants and cognitive interview parent participants wererecruited through personal contacts, which may have biased feedback. All participantswere from a small geographic region of the USA, primarily Caucasian and highlyeducated, which may have influenced our results. We also were forced to limit the finalnumber of items in all domains for future field testing to be feasible.
CONCLUSIONS
An item bank, response options, and a Responsibility scale for a computer-adaptedtesting version of the PEDI (PEDI-CAT) were developed on the basis of feedback fromexpert clinicians and parents. Computer-adapted testing has potential for shortening thetime needed to complete the measure as fewer items are administered. Normative-baseditem calibrations for the PEDI-CAT will be developed by collecting general populationdata for creating scoring algorithms and score reports. When calibrations are completed,the PEDI-CAT will be evaluated for reliability, validity, and precision. Our aim is tocreate an assessment for children and youth that will improve individual service deliveryand the evaluation of outcomes of rehabilitation interventions.
Declaration of interest: Dr. Haley and Mr. Moed own founders stock in CREcare,LLC, which distributes the PEDI and PEDI-CAT products.
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