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• W3094383433 abstract "Physical function can be assessed through physical examination with the use of performance-based measures and patient-reported outcome measures (PROMs). Each form of assessment provides a unique contribution to the understanding of the impact of rheumatologic conditions on the patient. PROMs of physical function (PF) are an important component of the assessment of children with arthritis and have been included in the recommended core set of measures for childhood arthritis and musculoskeletal conditions. These measures provide the child's or parent's perspective of function within the context of daily living. Measures of PF include both generic measures, which are designed for use across a spectrum of diseases and within healthy individuals, and disease-specific measures, which are developed intentionally for children with a rheumatologic or musculoskeletal condition. Most PF PROMs include items that relate to daily functional activities, but not all include aspects of daily living, play, and recreation, which are activities essential to the physical, social, and emotional development of children. The use of PROMs for children with arthritis is influenced by many factors. First, pediatric rheumatologic conditions are heterogeneous. For example, juvenile idiopathic arthritis (JIA) has seven established subtypes, including oligoarticular, systemic, polyarticular rheumatoid factor (RF)-positive, polyarticular RF-negative, psoriatic, enthesitis-related, and undifferentiated arthritis 1. Each subtype has distinct clinical features and differing ages of onset. Other diseases, such as juvenile idiopathic inflammatory myositis (IIM) and systemic lupus erythematosus (SLE), also vary in clinical presentation. In diseases with an early age of onset, children's cognitive abilities will limit the use of self-report, requiring the use of proxy respondents (parent or guardian). Additionally, the performance of PROMs within JIA subtypes is variable 2, and measures are less available for the transition from childhood to adulthood. Using the International Classification of Functioning, Disability, and Health developed by the World Health Organization, the measures 3-12 described below include the following domains: impairment (pain), activity limitations (activities of daily living [ADLs]), participation restriction, and overall health status 1, 2 for use in children with JIA, juvenile IIM, and other musculoskeletal conditions. Some of these PROMs are generic measures of PF (the Patient-Reported Outcomes Measurement Information System – Physical Function Scale [PROMIS-PF], Pediatric Outcomes Data Collection Instrument [PODCI], and Activity Scale for Kids [ASK]), whereas others have been developed specifically for children with juvenile arthritis (the Juvenile Arthritis Functional Assessment Scale [JAFAS], Child Health Assessment Questionnaire [C-HAQ], and CMAS) and for children with musculoskeletal conditions (the Knee Osteoarthritis Outcome Survey for Children [KOOS-Child] and International Knee Documentation Committee Subjective Knee Evaluation Form in Children [Pedi-IKDC]). Singh et al 8 developed the C-HAQ to examine functional health status in children (ages 1 to 18 years) with JIA. The C-HAQ has since been evaluated in a variety of conditions, including in children with chronic musculoskeletal pain, juvenile dermatomyositis (DM), juvenile IIM, and SLE 13-17. The C-HAQ is a core set measure recommended by the international research networks in pediatric rheumatology (the Paediatric Rheumatology International Trials Organization [PRINTO]) 18. The C-HAQ includes a disability index, which assesses the following eight domains of PF: dressing and grooming, arising, eating, walking, hygiene, reach, grip, and activities. The disability index is supplemented with two visual analog scales (VASs) as follows: one for pain (the discomfort index) and one for global assessment of overall well-being (the health status index). The disability index includes 30 items. The discomfort index and health status index add one item each to the tool. Each item within the C-HAQ disability index is scored on a four-point scale (0 = without any difficulty, 1 = with some difficulty, 2 = with much difficulty, and 3 = unable to do). Respondents are prompted to indicate if assistance or aids are needed to complete each talk. Reporting the use of assistance or aids within a domain sets the score to a minimum of two for that domain. Activities that the child is unable to do because he/she is too young are marked as not applicable (N/A) for age. Respondents are asked to consider the completion of tasks within the past week. There is no cost when using the tool for research purposes. The C-HAQ can be obtained by contacting Gurkirpal Singh (gsingh@leland.stanford.edu) or via websites such as http://www.niehs.nih.gov/research/resources/collab/imacs/diseaseactivity.cfm. The C-HAQ is typically administered via paper and pencil using self-report for children aged 8 years or older and proxy report (eg, parent or guardian) for children less than 8 years of age. The C-HAQ is sometimes administered via interview, particularly when it is being completed for research purposes 19. Geerdink et al 20 developed a digital version of the C-HAQ for the purpose of systematic monitoring in clinical settings. The digital version was found to be both reliable and user friendly 20. Within each of the eight domains, the item with the highest disability score determines the score for that domain. The global disability index is then obtained by calculating the mean of the eight functional domains, with a range of 0 to 3. The two VAS items (the discomfort index and the health status index) are measured on separate 15-cm scales. The distance from the left end of the scale to the respondent's mark is measured and multiplied by 0.2 to calculate the score, with a possible range of 0 to 3. Additional information on scoring can be found at https://www.niehs.nih.gov/research/resources/assets/docs/chaq_instructions_508.pdf. The disability index score ranges from 0 (no disability) to 3 (disabled). A higher score indicates a greater disability. This is a criterion-referenced test; however, Dempster et al 21 found that the median C-HAQ scores corresponding with mild, mild to moderate, and moderate disability were 0.13, 0.63, and 1.75, respectively. The time to complete the C-HAQ is 5 to 10 minutes. The administrative burden is low because no special equipment or training is needed to administer the C-HAQ. It takes approximately 2 minutes to score. Two alternate versions of the C-HAQ exist 22. Groen et al 23 studied one of these alternative versions of the C-HAQ, the C-HAQ-38, to address limitations related to ceiling effects when working with high-functioning patients with JIA. The C-HAQ-38 includes the addition of eight items, which ask respondents to indicate the amount of difficulty performing tasks more challenging than those included in the original list of 30 tasks. The other alternate version of the C-HAQ, the VASCHAQ, was modified from the C-HAQ-38 by removing the consideration for aids and devices or help, using response options in which questions are asked in relation to the child's peers, and using a 10-cm visual analog rating scale for each question. The C-HAQ has been translated and culturally adapted for use in more than 30 countries, including Argentina, Austria, Belgium, Brazil, Bulgaria, Chile, Croatia, Czech Republic, Denmark, Finland, France, Georgia, Germany, Greece, Hungary, Israel, Italy, Korea, Latvia, Mexico, Netherlands, Norway, Poland, Portugal, Russia, Slovakia, Spain, Sweden, Switzerland, Turkey, the United Kingdom, Yugoslavia 19, Arabic 24, and Costa Rica 25. The main limitation of the C-HAQ is the potential for a ceiling effect, particularly when assessing functional improvements among higher-functioning children (ie, those scoring closer to zero). Several authors have developed revised versions of the C-HAQ to address the ceiling effect. Recommendations to avoid a ceiling effect and improve discriminant validity include removing 12 redundant items 26, ignoring the domain structure and the use of aids and assistance 13, 26, 27, and using the C-HAQ-38, which includes eight additional items examining respondent's ability to complete more challenging tasks 23. Internal consistency has been demonstrated among children with JIA with Cronbach's α ranging from 0.88 to 0.96 8, 26, 28-30. Takken et al 26 evaluated shorter versions of the C-HAQ disability index and found good internal consistency for both the 29-item and 18-item versions (Cronbach's α = 0.93 for both). Among children with juvenile IIM, there were significant item-total correlations ranging from 0.35 to 0.81, with only four items with a correlation coefficient of less than 0.50. Each C-HAQ domain also correlated well with the total C-HAQ (r = 0.59-0.84) 14. For the test-retest reliability, which was studied at a 2-week interval, t tests revealed virtually identical disability index scores measured on the two occasions (0.96 versus 0.96; P > 0.9; Spearman rank correlation coefficient = 0.8; P< 0.002) 8. Stephens et al 31 examined test-retest reliability at 2 to 6 weeks among children with JIA and found very high reliability (intraclass correlation coefficient [ICC] 0.82, 95% confidence interval [CI] 3-1]). For patients with juvenile IIM and less than a 10% change in VAS of overall illness severity, the ICC was 0.96 17. Several studies have examined the correlation between C-HAQ disability index scores from questionnaires administered to parents and from questionnaires given to their children. All correlations were moderate to strong (r = 0.54-0.84; P < 0.05), demonstrating good interrater reliability 8, 21, 32, 33. The face validity of the instrument was first evaluated by a group of 20 health professionals and the parents of 22 healthy children 8. To establish convergent validity, C-HAQ scores were compared with a variety of other PF measures. Van Mater et al 34 conducted a systematic review of studies published between 1947 and 2010 that examined the validity of the C-HAQ and found moderate correlations of the C-HAQ with the active joint count (median correlation of 0.45 from seven studies) and limited range of motion (ROM) (median correlation of 0.49 from nine studies). The C-HAQ was most strongly correlated with the parent/patient assessment of global well-being (median correlation of 0.54 from six studies). Since this systematic review, Sontichai et al 35 identified a good correlation between the C-HAQ disability index and the patient's global assessment, physician's global assessment, and 27-joint Juvenile Arthritis Disease Activity Score in all JIA subtypes during active disease (P < 0.05) but a poor correlation between the C-HAQ disability index and disease activity variables during inactive disease. With regards to construct validity, Pouchot et al examined the validity of the C-HAQ in the following two age groups: children aged ten years and younger and children over ten years of age. They found that the difficulty of eight of 30 items of the C-HAQ depends on the responder's age. However, the impact of this age-related variation on the C-HAQ disability index score remained low (~0.25). As such, the authors concluded that the C-HAQ design and scoring system remove most of the expected bias related to physical development 36. C-HAQ responsiveness is variable in children with JIA, with effect sizes ranging from 0 to 0.5 27, 32, 37-40, and responsiveness is better among children with polyarticular JIA than those with oligoarticular JIA 34. In a study examining three versions of the C-HAQ, the C-HAQ, VASCHAQ, and C-HAQ-38 all demonstrated strong responsiveness when using self-report and proxy report. The VASCHAQ, however, was found to be approximately 25% more responsive than both the original C-HAQ-30 and the C-HAQ-38 41. In a study of children with juvenile IIM enrolled at diagnosis, the responsiveness coefficient was 0.90 17. Among 92 families with a child with JIA, the minimally clinical important difference (MCID) for improvement of the C-HAQ was 0.188 at most; the MCID for worsening was at most +0.125 42. The authors concluded that the C-HAQ is relatively insensitive to important short-term changes in children with JIA. In children with juvenile IIM considered by their physician to have improved over 6 months, the C-HAQ showed a standardized response mean (SRM) of 1.3 43. The C-HAQ has been validated for use with other disease conditions that impact PF among children, including juvenile DM 17, active juvenile SLE 16, juvenile IIM 17, and cerebral palsy (CP) 44, and with generalized musculoskeletal pain. The C-HAQ can be used to examine the natural history of disease as well as improvements in PF in children with JIA and juvenile IIM after participation in exercise training interventions 45. The C-HAQ's major strength is its multidimensionality, including eight domains of PF. In addition, the C-HAQ is brief, simple, and easy to administer and score. The C-HAQ is the most widely used measure by the rheumatology community and is included as a pediatric rheumatology core set measure for JIA, juvenile DM, and SLE. The C-HAQ has been culturally adapted for use in more than 30 countries and is useful for both clinical and research purposes. Bekkering et al 28 demonstrated no advantages of a performance test of PF as opposed to the C-HAQ to measure functional disability in children with JIA. The major limitation of the C-HAQ is the potential for a ceiling effect; the scale is less sensitive to milder levels of disability. Modified versions include eight high-level functional items to address the ceiling effect and have removed the items referring to the use of aids and devices for activities. The revised version allows for more normalized scores and demonstrated better psychometric properties. Dempster et al 21 suggested that clinicians as well as researchers consider a minimum improvement of 0.13 in C-HAQ scores to indicate functional improvement in children with arthritis. The C-HAQ is one of the most often used PROMs of PF among children with JIA and other pediatric rheumatology conditions. The C-HAQ and its revised versions demonstrate good reliability, validity, and responsiveness, suggesting its usefulness in clinical decision-making and in research. They are simple, brief, easy to use, and have been adapted for use in over 30 countries. The original C-HAQ is limited by its ceiling effect. The revised versions demonstrate better psychometric properties and, thus, are preferred to the original C-HAQ 13, 23, 26, 27. The JAFAS was developed by Lovell et al 5 as the first normalized measure to assess disability in children with JIA ages seven years and older in clinical settings. The JAFAS was developed for use in the US Bureau of Maternal and Children Health and Resources Development Project. The JAFAS requires the assessor to observe the child performing ten ADLs deemed difficult for children with arthritis to perform (eg, getting out of bed, dressing, picking an object up off the floor). The JAFAS includes ten items. The therapist observes the child performing activities and records the time it takes for the child to complete each task. Not applicable. There is no cost to use the JAFAS for research purposes. The JAFAS and its scoring manual can be obtained in the article by Lovell et al 5. The JAFAS is an observation measure that is to be administered by a physical or occupational therapist in a clinical or office setting. Activities are timed and compared with a criterion value noted on the form. The JAFAS is scored by hand. If a task is completed in less than or equal to the criterion time, then the task is scored as 0; if it is completed but requires longer than the criterion time, the task is scored as 1; if the patient unable to perform the task, the task is scored as 2. The scores for each task are then summed for a total JAFAS score. The possible range of scores is 0 to 20. A higher score indicates a greater level of disability. When the JAFAS when initially tested, control-group patients scored a mean of 0.43 (SD = 0.86) and patients with juvenile rheumatoid arthritis (JRA) scored a mean of 3.39 (SD = 3.42). It usually takes a child approximately 10 to 15 minutes to complete the activities. The JAFAS is relatively easy to administer and only takes 10 to 15 minutes. It does require a trained professional (training time is minimal) and standardized equipment, making the administrative burden higher than that of a paper-and-pencil questionnaire. The JAFAS has been culturally adapted for use among Indian children 46. The Indian version has internal consistency reliability similar to that of the C-HAQ. To date, no floor or ceiling effects have been reported for the JAFAS. Lovell et al 5 found that the mean interitem correlation of the JAFAS in the population with JIA was 0.36, indicating that the items capture different aspects of function. Internal consistency for the JAFAS varies from moderate to good, with a Cronbach's α ranging from 0.81 to 0.92 5, 28, 30. With regards to content validity, the JAFAS was developed from a range of tasks derived from the McMaster Health Index Questionnaire, the Arthritis Impact Measurement Scale, and the Health Assessment Questionnaire. An expert panel of pediatric physical and occupational therapists experienced in working with children with JIA reviewed items to ensure that the activities involved all aspects of the body during daily activities and were easy to measure objectively. Lovell et al 5 established convergent validity among a group of patients with JIA; they found that the JAFAS was significantly correlated with the number of involved joints (r = 0.40; P = 0.003), Steinbrocker functional class (r = 0.59; P = 0.0001), and disease activity (r = −0.32; P = 0.01). Bekkering et al 28 examined disability in 28 children with JIA and found that JAFAS and C-HAQ scores were positively correlated (r = 0.55; P < 0.01). The JAFAS was also correlated with measures of disease activity and joint counts, including swollen joints (r = 0.47; P < 0.05), physician's evaluation of disease activity (r = 0.41; P < 0.05), joint count on motion-restricted joints (r = 0.44; P < 0.05), and the pediatric Escola de Paulista de Medicina ROM scale 47 (r = 0.50; P < 0.01), demonstrating convergent validity. There was no significant association between JAFAS scores and erythrocyte sedimentation rate and joint count on tender joints. There does appear to be a floor effect when using the JAFAS in relatively high-functioning children. The ability of the JAFAS to capture change in children's PF was assessed in a study examining the impact of intra-articular injections in 92 children with JIA and was found to be moderate at the 6-week evaluation (SRM = 0.41; 95% CI 0.18-0.64) 48. Minimally important differences have not been reported for the JAFAS. Although the JAFAS was developed for children with JIA, it can be used to assess function and musculoskeletal involvement in children with SLE who have compromised PF. The JAFAS has been used in studies of exercise in children with JIA 49. The JAFAS provides reference values for the ten ADLs performed by the child and scores the child based on the time it takes to complete the activity. The JAFAS has clear, concise, and understandable directions for use and has been shown to correlate well with other measures of disease activity and movement. The biggest limitation is the need for a trained observer and standardized equipment in the clinical setting. The JAFAS also does not include play and recreation items and is limited to ten activities. There is no information on how to handle missing items. The JAFAS has been used in clinical trials of intra-articular joint injections in children with JIA. Bekkering et al 28 indicated the Juvenile Arthritis Functional Assessment Report (JAFAR) could be as useful as the JAFAS and has less administrative burden. Although the JAFAS has been shown to be reliable and valid, there are limited data on its ability to assess change following an intervention, and it requires the use of a trained observer. The JAFAS measures function as it relates to ten ADLs and may be best suited for children with limited ROM and strength deficits. The JAFAS does not provide an assessment of the child's ability to engage in play and recreation. Other existing measured such as the C-HAQ and JAFAR may be more efficient for use in clinical practice and research because the C-HAQ has the added benefit of having responsiveness data. The JASI assesses PF status and ADLs in children with JIA, ages 8 to 18 years 50. Items for the JASI were developed based on interviews of children, parents, teachers, and clinicians. The JASI Part I includes 100 items divided into five activity categories (self-care, domestic, mobility, school, and extracurricular). The JASI Part II is a priority function section in which children are asked to identify and score activities for which they want to see improvement 51. Part I includes 100 items, and Part II includes five items. A seven-point degree of difficulty rating scale is used for responses (6 = as well as friends/family without arthritis; 5 = it is a little difficult; 4 = it is very difficult; 3 = using special equipment; 2 = with a little help from someone; 1 = with a lot of help from someone; 0 = someone has to do it for me or I cannot do it because of my arthritis). The recall period of time is the current status. There is a fee for the training manual and software, which can be obtained from the developer. The JASI can be obtained from Dr. Wright at Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road, Toronto, Ontario M4G 1R8, Canada (vwright@hollandbloorview.ca). The child completes Part I on a computer; Part I takes approximately 20 to 45 minutes to complete. For Part II, the child is interviewed; the interview takes approximately 20 minutes to complete. Part I is automatically scored using computer software. Part II is scored by hand according to the test manual. The Part I range of scores is 0 to 600. The Part II range of scores is 0 to 30. Lower scores reflect greater disability. This is a criterion-referenced test. Time to complete is not reported in the literature. The test is relatively time-consuming, taking approximately 40 minutes to administer, and requires computer software and a test manual, which can be obtained from the authors who developed the tool. The JASI has not been translated or culturally adapted. The JASI has no reported floor or ceiling effects. To determine test-retest reliability, Wright et al 51 administered the JASI to 30 children with JRA between 8 and 19 years of age at baseline, 3 weeks, and 3 months 51. Reliability of the JASI Part I was excellent at 3 weeks (ICC = 0.98) and 3 months (ICC = 0.99). Reliability was lower for respondents with mild disease than those with polyarticular JIA. Test-retest reliability for the JASI Part II was fair (κ = 0.57). Seventeen clinicians reviewed the questionnaire and rated the index as a credible functional measure of JIA, establishing content validity 50. When tested for construct validity, JASI Part I scores correlated strongly with joint count (r = 0.51), grip strength (r = 0.64), hip synovitis (r = 0.64), timed walk and run (r = 0.83), and American College of Rheumatology functional class (r = 0.80) 51. Brown et al 32 examined the responsiveness of the JASI during a 4-year prospective study in which children with JIA were receiving intra-articular steroid injections and methotrexate treatment. The JASI demonstrated weak to moderate responsiveness to change, with an SRM of 0.36. Minimally important differences have not been established in the literature. The JASI is not appropriate for use in children aged 7 years or younger. Because of the time to administer, the need for training and special equipment, and its weak to moderate responsiveness, its use in clinical trials has been limited. The major strength of the JASI is that it examines function across a range of environments (eg, home, school, and play). The JASI was developed using rigorous methodology and involved patients, parents, clinicians, and teachers in the item generation. Limitations of the JASI include the length of time it takes for children to complete both portions of the JASI, the reliance on computer software for Part I, and although minimal, the cost for the software, which might deter some from using the JASI versus other valid and reliable assessments of functional status available for free. The JASI is also not appropriate for use in children aged 7 years or younger. JASI is a well-developed PF measure for children with arthritis. It provides a comprehensive picture of function across a spectrum of activities and allows the child to rank what the child perceives are the most important issues to change. Given its length and equipment/training needs, its use in daily clinical practice is limited. The POSNA PODCI, formerly known as the POSNA Pediatric Musculoskeletal Functional Health Questionnaire, assesses functional health outcomes, specifically musculoskeletal health (pain, participation in daily activities as well as vigorous activities) for both healthy children and adolescents and those with musculoskeletal conditions 52. The PODCI was developed as a patient-centered measure that could be used across a wide range of ages and musculoskeletal disorders for the clinical assessment of treatment effectiveness and musculoskeletal research. The PODCI has a child version to be completed by a parent/physician proxy and two surveys for adolescents (one that can be completed by a proxy and one that can be completed by self-report). For the purpose of this measure, a child is defined as being 2 to 10 years old, and an adolescent is between 11 and 18 years old. The PODCI includes the following subscales that examine upper extremity (UE) and PF, transfers and basic mobility (TBM), sports and PF (SPF), pain/comfort (PC), happiness (HAP), and a global function score (GFS). The original questionnaire included a treatment expectations scale 52, but this was excluded in later versions 53. The original questionnaire had a total of 114 items, and the average time to complete was approximately 15 minutes for the adolescent version and 10 to 12 minutes for parent versions. The newer version (PODCI) has 83 items and five subscales for the adolescent version and 86 for the parent versions. Within the five scales, the TBM has 11 items, the SPF has 21 items, the PC has three items, the UE has eight items, and the HAP subscale has five items. The response options vary, with some nominal items (yes/no) and some ordinal scales. The range for the ordinal scales is either a four-point or five-point scale, depending on the question. For the additional comorbidity scale, there is a list of diseases, and the proxy or adolescent responds to whether the child/adolescent has the condition, is receiving treatment for the condition, and whether it limits activity. For a few items, there is the option to select that the child is too young to do the activity. If this is selected for an item, the item is treated as missing and omitted from the score. The reference period is 1 week for all items except for one item that asks for recall over 1 year. There is no cost to use this questionnaire. The PODCI can be obtained from the American Academy of Orthopedic Surgeons (AAOS) website (http://www.aaos.org/research/outcomes/outcomes_peds.asp). The PODCI is a pen-and-paper survey. The survey provides clear instructions regarding the reference time period and response categories. A proxy (parent or guardian) completes the parent/child questionnaire for children aged 2 to 10 years. The parent/adolescent questionnaire can be completed either by the parent as a proxy or by the adolescent as self-report. A formula is provided and is used to compute a standardized score for each subscale using the raw score. In brief, all items in the subscales are converted so that the vales range from 0 to 5. Then, the scores for all items in a subscale are averaged for those items that are not missing. The mean of the subscales is multiplied by a constant value to generate a score range of 0 to 100 52. A minimum of 50% of the items in a scale must have a response for the scale score to be computed. When assessing a young child using the parent proxy, roughly 0% to 25% of items are often missing because of the inability to score the child in specific domains, including HAP and satisfaction. The GFS is calculated by taking the mean of the “mean of items” in the first four subscales. Comorbidity subscales and a comorbidity index, which computes an average of the responses, are calculated. The AAOS provides an excel file on its website to score the raw data. Each worksheet has the formula embedded for the specific subscale. Higher scores indicate more of the specific trait measured by the subscale. Haynes et al 53 used the questionnaire with 57 healthy children and 27 healthy adolescents and determined that a child scoring in the low 80s or lower is functioning at a different level than a healthy child. The AAOS has a large national database that uses the PODCI and provides access to normative data and enables analysis by age, sex, and comorbidity 54. Normative values exist for the PODCI 53, 55. To calculate a normative value for a patient, subtract the population standardized mean from the patient's score and then divide this value by the population SD and multiply the new value by 10 and add 50 to the final value. It takes approximately 15 minutes to complete 56. The administrative burden is low because no special equipment or training is needed. The scoring is calculated using the excel fil" @default.
• W3094383433 created "2020-10-29" @default.
• W3094383433 creator A5049380167 @default.
• W3094383433 creator A5071716940 @default.
• W3094383433 date "2020-10-01" @default.
• W3094383433 modified "2023-10-05" @default.
• W3094383433 title "Measures of Pediatric Function and Physical Activity in Arthritis" @default.
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