Dutch–Flemish translation of nine pediatric item banks from the Patient-Reported Outcomes Measurement Information System (PROMIS)®

Purpose: The Patient-Reported Outcomes Measurement Information System (PROMIS®) is a new, state-of-the-art assessment system for measuring patient-reported health and well-being of adults and children. It has the potential to be more valid, reliable, and responsive than existing PROMs. The items banks are designed to be self-reported and completed by children aged 8–18 years. The PROMIS items can be administered in short forms or through computerized adaptive testing. This paper describes the translation and cultural adaption of nine PROMIS item banks (151 items) for children in Dutch–Flemish. Methods: The translation was performed by FACITtrans using standardized PROMIS methodology and approved by the PROMIS Statistical Center. The translation included four forward translations, two back-translations, three independent reviews (at least two Dutch, one Flemish), and pretesting in 24 children from the Netherlands and Flanders. Results: For some items, it was necessary to have separate translations for Dutch and Flemish: physical function—mobility (three items), anger (one item), pain interference (two items), and asthma impact (one item). Challenges faced in the translation process included scarcity or overabundance of possible translations, unclear item descriptions, constructs broader/smaller in the target language, difficulties in rank ordering items, differences in unit of measurement, irrelevant items, or differences in performance of activities. By addressing these challenges, acceptable translations were obtained for all items. Conclusion: The Dutch–Flemish PROMIS items are linguistically equivalent to the original USA version. Short forms are now available for use, and entire item banks are ready for cross-cultural validation in the Netherlands and Flanders

Professional functioning of young adults with congenital coagulation disorders in the Netherlands

Introduction and Aim: Suboptimal health-related quality of life and lowered employment rates found in a previous study in young adults (YA) with congenital coagulation disorders (CCD) in the Netherlands underline the need for more insight into professional functioning of YA with CCD and into determinants of professional functioning. Methods: Young adults (18-30 years) with CCD participated in a cross-sectional study. Professional functioning was assessed with the Work Productivity and Activity Impairment questionnaire (WPAI). Potential determinants were assessed with the Course of Life Questionnaire (CoLQ), Pediatric Quality of Life Inventory Young Adult version (PedsQL_YA), Illness Cognition Questionnaire (ICQ) and Haemophilia Activities List (HAL). Logistic regression analyses were performed in the complete sample of YA with CCD, and in YA men with haemophilia separately, to examine determinants of WPAI outcomes. Results: Ninety-four YA (77 men; mean age 24.1 years, SD 3.5 and 17 women; mean age 24.5 years, SD 3.8) with CCD (74% haemophilia A/B) participated. 74.5% of YA wer

Validation of PROMIS Profile-29 in adults with hemophilia in the Netherlands

Background The Patient-Reported Outcomes Measurement Information System (PROMIS) Profile-29 questionnaire is widely used worldwide, but it has not yet been validated in the Netherlands, nor in persons with hemophilia. Objective To validate the Dutch-Flemish version of the PROMIS-29 Profile v2.01 in adults with hemophilia. Methods Dutch males with hemophilia (all severities) completed questionnaires that contained sociodemographic and clinical characteristics, the PROMIS-29, RAND-36, and the Hemophilia Activities List (HAL). Structural validity of each subscale was assessed with confirmatory factor analysis (CFA). Internal consistency was calculated for each subscale with sufficient model fit in CFA. Construct validity was assessed by testing hypotheses about (1) correlations of each PROMIS-29 subscale with corresponding scales of RAND-36 and domains of HAL, and (2) mean differences in T-scores between subgroups with different hemophilia severities, self-reported joint impairment, and HIV infection status. We considered &gt;= 75% of data in accordance with the hypotheses evidence for construct validity. Results In total, 770 persons with hemophilia participated in this cross-sectional study. CFA revealed sufficient structural validity for five subscales: Physical Function, Depression, Sleep Disturbance, Ability to Participate in Social Roles and Activities, and Pain Interference. Internal consistency was high and Cronbach's alpha ranged from 0.79 for Sleep Disturbance to 0.96 for Pain Interference. Differences between clinical subgroups were in the expected direction. Construct validity was confirmed for Physical Function, Anxiety, Depression, Fatigue, Sleep Disturbance, and Pain Intensity. Conclusion This study revealed sufficient evidence for structural validity, internal consistency, and construct validity for most PROMIS Profile-29 subscales among people with hemophilia in the Netherlands.</p

Psychometric Properties and CAT Performance of the PROMIS Pediatric Sleep Disturbance, Sleep-Related Impairment, and Fatigue Item Banks in Dutch Children and Adolescents

This study’s aim is to evaluate the psychometric properties of the pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) sleep disturbance (SD), sleep-related impairment (SRI), and fatigue item banks in Dutch children and adolescents since they are yet to be validated in this population. Children and adolescents aged 8–18 years old (n = 1,325), representative of the Dutch general population, were invited. The following psychometric properties of both item banks were assessed: structural validity by fitting a graded response model (GRM) for which assumptions were checked and assessing item fit, reliability, and efficiency for the full-length item bank, short forms, and computerized adaptive test (CAT). Mean T scores and cutoff scores for mild, moderate, and severe scores were determined. A total of 527 children (response rate 39.7%) were included. SD did not meet the assumption of unidimensionality. The SRI and fatigue item banks showed sufficient structural validity. Three items showed GRM misfit; SRI item w026c and fatigue items 3224R1r and 4191R1r. Both item banks measured reliable (>.90) at the mean of the population and 2SD in the clinical direction. CATs outperformed short forms in efficiency. Mean T scores for the Dutch population were: SRI 47.5 (SD = 10.0) and fatigue 39.8 (SD = 12.4). Cutoffs included SRI minimal ≥ 34.7, moderate ≥ 55.6, severe ≥ 63.2 and fatigue minimal ≥ 23.9, moderate ≥ 49.9, severe ≥ 61.3. PROMIS pediatric SRI and fatigue item banks, short forms, and CAT showed sufficient structural validity and reliability in the Dutch population. Dutch reference values are provided. More research is needed for the PROMIS SD item bank

Advances in measuring pediatric overall health: the PROMIS® Pediatric Global Health scale (PGH-7)

In this cross-sectional study, we aimed to assess the reliability, validity, and efficiency of the Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Global Health scale (PGH-7) to reduce patient burden when assessing overall health in clinical practice. In total, 1082 children (8–18), representative of the Dutch population, completed the PGH-7 and the Pediatric Quality of Life Inventory (PedsQL™ 4.0), a common legacy instrument used in clinical practice to assess overall health. The assumptions for fitting an item response theory model were assessed: unidimensionality, local independence, and monotonicity. Subsequently, a model was fitted to the data to assess item fit and cultural differential item functioning (DIF) between Dutch and US children. A strong correlation (>.70) was expected between the PGH-7 and PedsQL, as both instruments measure physical, mental, and social domains of health. Percentages of participants reliably measured (> 0.90) were assessed using the standard error of measurement (SE(θ) < 0.32). Efficiency was calculated ((1 − SE(θ) 2)/n items) to compare how well both measures performed relative to number of items administered. The PGH-7 met all assumptions and displayed good structural and convergent (r =.69) validity. One item displayed cultural DIF. Both questionnaires measured reliably (%n PGH-7 = 73.8%, %n PedsQL = 76.6%) at the mean and 2SD in clinically relevant direction. PGH-7 items were 2.6 times more efficient in measuring overall health than the PedsQL. Conclusion: The PGH-7 displays sufficient validity and reliability in the general Dutch pediatric population and measures more efficiently than the PedsQL, the most commonly used legacy instrument. The PGH-7 can be used in research and clinical practice to reduce patient burden when assessing overall health.What is Known:• Generic instruments which validly and reliably assess overall pediatric health are scarce.• Brief instruments are required for implementation of self-report patient-reported outcomes in clinical practice.What is New:• The PROMIS Pediatric Global Health (PGH-7) can be used in research and clinical practice to briefly assess overall pediatric health, while providing valid and reliable measurements.• The PGH-7 provides more efficient assessment of pediatric overall health than the Pediatric Quality of Life Inventory