Patient‐Reported Outcomes Measurement Information System Tools for Collecting Patient‐Reported Outcomes in Children With Juvenile Arthritis

Brandon, Timothy G.; Becker, Brenda D.; Bevans, Katherine B.; Weiss, Pamela F.

doi:10.1002/acr.22937

Cited by 48 publications

(65 citation statements)

References 30 publications

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“…11,12 The domain and sum scores as reported in the present study in Dutch children were higher than previous reported data in UK, Romania and Lithuania. Differences between child and parent proxy scores were also reported in other paediatric PROMs, and the recommendation is to measure both perspectives.…”

Section: Comparison With Other Studiescontrasting

confidence: 83%

The Paediatric Haemophilia Activities List (pedHAL) in routine assessment: changes over time, child‐parent agreement and informative domains

et al. 2019

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Introduction The Paediatric Haemophilia Activities List (pedHAL) assesses self‐reported limitations in activities and participation in children with haemophilia. Aim To assess longitudinal changes, child‐parent agreement and to identify which pedHAL domains yielded most information in boys with access to early prophylaxis. Methods The pedHAL (53 items, 7 domains, optimum 100) was completed annually at the Van Creveldkliniek by boys aged 4‐18 years with moderate/severe haemophilia and their parents. Development of the pedHAL in relation to bleeds, changes per domain over 3‐5 years, child‐parent agreement (% difference child‐parent≤|5|) per domain and domain scores (limitations defined as ≤ 95) were determined. Results Seventy‐three patients and their parents (92% severe haemophilia, median age 13.1 years [range 5.4;18.0]) completed ≥1 pedHAL. Median (IQR) pedHAL sum score was 99.5 (95.2;100.0) for children and 99.6 (95.8;100.0) for parents. If patients scored >95 and had no joint and/or muscle bleed, 90.9% of the patients scored >95 at the next assessment. The median change in sum score was 0.0 for both the 3‐ and 5‐year interval. Child‐parent agreement varied between domains from 92% (‘self‐care’) to 71% (‘sitting/kneeling/standing’). Most limitations were reported in the domains ‘sitting/kneeling/standing’, ‘functions of the legs’ and ‘leisure activities and sports.’ Conclusion In routine clinical practice in Dutch children on prophylaxis, pedHAL scores were high and remained stable in 3‐5 years at group level. In individual patients without joint and/or muscle bleeds, pedHAL scores remained high after 1 year. Child‐parent agreement was not optimal which indicated that both child report and parent proxy should be reported.

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Section: Comparison With Other Studiescontrasting

confidence: 83%

The Paediatric Haemophilia Activities List (pedHAL) in routine assessment: changes over time, child‐parent agreement and informative domains

et al. 2019

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“…In recent years, the focus of health care has been drifting toward the inclusion of health-related quality of life (HRQoL) outcomes for patients in research and daily clinical practice by administering patient-reported outcome measures (PROMs) (1)(2)(3)(4)(5)(6). Previous studies have shown that rheumatology could benefit greatly from the use of patient-reported outcomes, as patients experience a wide array of problems (7) for which there is a disconnect between patient-reported outcomes and outcomes reported | 1781 by parents or clinicians (8). In clinical practice, there are often multiple PROMs available to measure the same construct/domain that differ in content, length, and scoring methods.…”

Section: Introductionmentioning

confidence: 99%

Psychometric Properties of the Pediatric Patient‐Reported Outcomes Measurement Information System Item Banks in a Dutch Clinical Sample of Children With Juvenile Idiopathic Arthritis

Luijten

Terwee

Oers

et al. 2020

Arthritis Care & Research

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Objective. To assess the psychometric properties of 8 pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) item banks in a clinical sample of children with juvenile idiopathic arthritis (JIA). Methods. A total of 154 Dutch children (mean ± SD age 14.4 ± 3.0 years; range 8-18 years) with JIA completed 8 pediatric version 1.0 PROMIS item banks (anger, anxiety, depressive symptoms, fatigue, pain interference, peer relationships, physical function mobility, physical function upper extremity) twice and the Pediatric Quality of Life Inventory (PedsQL) and the Childhood Health Assessment Questionnaire (C-HAQ) once. Structural validity of the item banks was assessed by fitting a graded response model (GRM) and inspecting GRM fit (comparative fit index [CFI], Tucker-Lewis index [TLI], and root mean square error of approximation [RMSEA]) and item fit (S-X 2 statistic). Convergent validity (with PedsQL/C-HAQ subdomains) and discriminative validity (active/inactive disease) were assessed. Reliability of the item banks, short forms, and computerized adaptive testing (CAT) was expressed as the SE of theta (SE[θ]). Testretest reliability was assessed using intraclass correlation coefficients (ICCs) and smallest detectable change. Results. All item banks had sufficient overall GRM fit (CFI >0.95, TLI >0.95, RMSEA <0.08) and no item misfit (all S-X 2 P > 0.001). High correlations (>0.70) were found between most PROMIS T scores and hypothesized PedsQL/ C-HAQ (sub)domains. Mobility, pain interference, and upper extremity item banks were able to discriminate between patients with active and inactive disease. Regarding reliability, PROMIS item banks outperformed legacy instruments. Post hoc CAT simulations outperformed short forms. Test-retest reliability was strong (ICC >0.70) for all full-length item banks and short forms, except for the peer relationships item bank. Conclusion. The pediatric PROMIS item banks displayed sufficient psychometric properties for Dutch children with JIA. PROMIS item banks are ready for use in clinical research and practice for children with JIA.

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“…If the computer network was down or the participant preferred paper, static eight‐item short forms were used. A previous study in children with juvenile arthritis found equivalence between the PROMIS Pediatric CAT and short forms . Each question's recall period was “the past 7 days,” and the questions had five response categories.…”

Section: Methodsmentioning

confidence: 99%

“…A previous study in children with juvenile arthritis found equivalence between the PROMIS Pediatric CAT and short forms. 22 Each question's recall period was "the past 7 days," and the questions had five response categories. The PROMIS Pediatric scores were on a T-score metric with mean of 50 (standard deviation of 10) in the original calibration sample.…”

Section: Methodsmentioning

confidence: 99%

Expanding construct validity of established and new PROMIS Pediatric measures for children and adolescents receiving cancer treatment

Reeve

McFatrich

Mack

et al. 2020

Pediatric Blood & Cancer

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Background The Patient‐Reported Outcomes Measurement Information System (PROMIS) Pediatric measures were designed to assess symptoms and functioning in children and adolescents. The study goal was to evaluate the validity and responsiveness of the PROMIS Pediatric measures in a diverse cohort of children with cancer. Methods Children (7‐18 years) from nine pediatric oncology hospitals completed surveys at 72 hours preceding treatment initiation (T1) and at follow‐up (T2) approximately 7 to 17 days later for chemotherapy, and 4+ weeks later for radiation. Children completed PROMIS Pediatric measures (Mobility, Pain Interference, Fatigue, Depressive Symptoms, Anxiety, Psychological Stress), Memorial Symptom Assessment Scale (MSAS), and global impressions of change (GIC) questions on their symptoms and functioning at T2 reflecting on T1. Parents completed the Lansky Play‐Performance Status (PPS) scale and medication list for their child. Results The children (n = 482) were average age 12.9 years, 46% female, 60% Caucasian, and had diverse cancers and treatments. There were moderate to strong correlations between PROMIS Pediatric and MSAS, supporting convergent validity. In support for known‐groups validity, the PROMIS Pediatric average scores were statistically different (P < 0.05) for most domains by PPS and if the child was on a medication (or not) for controlling a symptom. The PROMIS Pediatric measures were responsive over time in association with the GIC. Conclusions In a large, diverse sample of children and adolescents with cancer, there was strong evidence for the construct validity and responsiveness of the PROMIS Pediatric measures. This evidence supports PROMIS Pediatric measure use in pediatric oncology trials.

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Patient‐Reported Outcomes Measurement Information System Tools for Collecting Patient‐Reported Outcomes in Children With Juvenile Arthritis

Cited by 48 publications

References 30 publications

The Paediatric Haemophilia Activities List (pedHAL) in routine assessment: changes over time, child‐parent agreement and informative domains

The Paediatric Haemophilia Activities List (pedHAL) in routine assessment: changes over time, child‐parent agreement and informative domains

Psychometric Properties of the Pediatric Patient‐Reported Outcomes Measurement Information System Item Banks in a Dutch Clinical Sample of Children With Juvenile Idiopathic Arthritis

Expanding construct validity of established and new PROMIS Pediatric measures for children and adolescents receiving cancer treatment

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