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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) θ)2)/nitems) 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 (%nPGH-7 = 73.8%, %nPedsQL = 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.

This study aimed to validate the PROMIS ® pediatric v2.0 Anger scale in the Dutch general population, provide reference data, and compare reliability and relative efficiency between the full-length scale, its short-form, computerized adaptive test (CAT), and Pediatric Quality of Life Inventory (PedsQL TM) emotional functioning (EF) subscale scores. Children (N = 1,328), representative of the Dutch population, were asked to complete the PROMIS pediatric Anger scale (8–18 years) and PedsQL TM (8–17 years). A graded response model (GRM) was fit to the data. Structural validity was assessed by checking item-fit statistics (S−X 2, p 0.50) was expected between the Anger scale and PedsQL TM EF subscale score. Dutch mean T score based on the U.S. model was calculated to provide reference data and cut-offs. Standard error of measurement (SE(θ)) was used to assess reliability (SE(θ) 2/N items) to compare how good the measures performed relative to the amount of items administered. In total, 527 children completed the PROMIS pediatric Anger scale, of which 482 completed the PedsQL TM. Structural validitywas sufficient as no items displayedmisfit (S−X 2 = 22.9–40.3, p >.001). The Anger scale score correlated moderately (Pearson’s r =.64) with the PedsQL TM EF subscale score. Dutch mean T score was 44.20 (SD = 11.39), with cut-offs of >52.2 for moderate and ≥62.3 for severe symptoms. Reliable measurements were obtained at the population mean and >2SD in the clinically relevant direction. CAT outperformed all other measures in efficiency. The PROMIS pediatric Anger scale displayed sufficient psychometric properties within the Dutch population and reference data are available.

Purpose During the COVID-19 pandemic in the Netherlands, governmental regulations resulted in a lockdown for adults as well as children/adolescents. Schools were closed and contact with other people was limited. In this cross-sectional, population-based study, we aimed to investigate the mental/social health of children/adolescents during COVID-19 lockdown. Methods Two representative samples of Dutch children/adolescents (8–18 years) before COVID-19 (2018, N = 2401) and during lockdown (April 2020, N = 844) were compared on the Patient-Reported Outcomes Measurement Information System (PROMIS) domains: global health, peer relationships, anxiety, depressive symptoms, anger, sleep-related impairment by linear mixed models and calculating relative risks (RR (95% CI)) for the proportion of severe scores. Variables associated with worse mental/social health during COVID-19 were explored through multivariable regression models. The impact of COVID-19 regulations on the daily life of children was qualitatively analyzed. Results Participants reported worse PROMIS T-scores on all domains during COVID-19 lockdown compared to before (absolute mean difference range 2.1–7.1 (95% CI 1.3–7.9). During lockdown, more children reported severe Anxiety (RR = 1.95 (1.55–2.46) and Sleep-Related Impairment (RR = 1.89 (1.29–2.78) and fewer children reported poor Global Health (RR = 0.36 (0.20–0.65)). Associated factors with worse mental/social health were single-parent family, ≥ three children in the family, negative change in work situation of parents due to COVID-19 regulations, and a relative/friend infected with COVID-19. A large majority (> 90%) reported a negative impact of the COVID-19 regulations on daily life. Conclusion This study showed that governmental regulations regarding lockdown pose a serious mental/social health threat on children/adolescents that should be brought to the forefront of political decision-making and mental healthcare policy, intervention, and prevention.

Purpose This study aimed to validate the PROMIS Pediatric item bank v2.0 Peer Relationships and compare reliability of the full item bank to its short form, computerized adaptive test (CAT) and the social functioning (SF) subscale of the Pediatric Quality of Life Inventory (PedsQL™). Methods Children aged 8–18 (n = 1327), representative of the Dutch population completed the Peer Relationships item bank. A graded response model (GRM) was fit to the data. Structural validity was assessed by checking item-fit statistics (S-X2, p 0.50) was expected between Peer Relationships and the PedsQL SF subscale. Cross-cultural DIF between U.S. and NL was assessed using logistic regression, where an item with McFadden’s pseudo R2 > 0.02 was considered to have DIF. Percentage of participants reliably measured was assessed using the standard error of measurement (SEM) 2)/nitems) was calculated to compare how well the instruments performed relative to the amount of items administered. Results In total, 527 (response rate: 39.7%) children completed the PROMIS v2.0 Peer Relationships item bank (nitems = 15) and the PedsQL™ (nitems = 23). Structural validity of the Peer Relationships item bank was sufficient, but one item displayed misfit in the GRM model (S-X2 R2 = 0.0253). The item bank correlated moderately high (r = 0.61) with the PedsQL SF subscale Reliable measurements were obtained at the population mean and > 2SD in the clinically relevant direction. CAT outperformed all other measures in efficiency. Mean T-score of the Dutch general population was 46.9(SD 9.5). Conclusion The pediatric PROMIS Peer Relationships item bank was successfully validated for use within the Dutch population and reference data are now available.

The aim of the study was to assess internalizing problems before and during the pandemic with data from Dutch consortium Child and adolescent mental health and wellbeing in times of the COVID-19 pandemic, consisting of two Dutch general population samples (GS) and two clinical samples (CS) referred to youth/psychiatric care. Measures of internalizing problems were obtained from ongoing data collections pre-pandemic (NGS = 35,357; NCS = 4487) and twice during the pandemic, in Apr–May 2020 (NGS = 3938; clinical: NCS = 1008) and in Nov–Dec 2020 (NGS = 1489; NCS = 1536), in children and adolescents (8–18 years) with parent (Brief Problem Monitor) and/or child reports (Patient-Reported Outcomes Measurement Information System®). Results show that, in the general population, internalizing problems were higher during the first peak of the pandemic compared to pre-pandemic based on both child and parent reports. Yet, over the course of the pandemic, on both child and parent reports, similar or lower levels of internalizing problems were observed. Children in the clinical population reported more internalizing symptoms over the course of the pandemic while parents did not report differences in internalizing symptoms from pre-pandemic to the first peak of the pandemic nor over the course of the pandemic. Overall, the findings indicate that children and adolescents of both the general and clinical population were affected negatively by the pandemic in terms of their internalizing problems. Attention is therefore warranted to investigate long-term effects and to monitor if internalizing problems return to pre-pandemic levels or if they remain elevated post-pandemic.

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.

Background To reduce the burden of completing Patient-Reported Outcome Measures (PROMs), PROMIS® Computerized Adaptive Tests (CATs) are being implemented in pediatric clinical practice. We aimed to develop recommendations for visual feedback options for PROMIS CATs on individual item and domain score level as an evidence-based feedback recommendation for PROMIS CATs is lacking. Methods Focus groups were held with clinicians who use the KLIK PROM portal. Literature-based feedback options were provided to initiate group discussion. Data was analyzed using thematic coding method. Additionally, a questionnaire was sent out to assess patients’ (12-18y) and parents’ (child 0-18y) preference for individual item feedback. Data was analyzed using descriptive statistics. Results Six focus groups were held (N = 28 clinicians). Regarding individual item feedback, showing the complete item bank, with only responses to administered items in traffic light colors was preferred. For domain scores, line graphs were preferred, including numerical (T-)scores, reference and cut-off lines, and traffic light colors. Separate graphs per domain, ranked in order of importance and harmonization of directionality (‘higher = better’) were considered important. Questionnaire results (N = 31 patients/N = 131 parents) showed that viewing their own item responses was preferred above receiving no item feedback by 58.1% of the patients and 77.1% of the parents. Conclusions Based on the outcomes and after discussion with the Dutch-Flemish PROMIS National Center, recommendations for PROMIS CAT feedback options were developed. PROMIS CATs can now be used in clinical practice to help clinicians monitor patient outcomes, while reducing the burden of completing PROMs for patients significantly.

The aim of the study was to assess internalizing problems before and during the pandemic with data from Dutch consortium Child and adolescent mental health and wellbeing in times of the COVID-19 pandemic, consisting of two Dutch general population samples (GS) and two clinical samples (CS) referred to youth/psychiatric care. In each sample, measures of internalizing problems were obtained from ongoing data collections pre-pandemic (NGS= 35,357; NCS= 4,487) and twice during the pandemic, in Apr.–May 2020 (NGS= 3,938; clinical: NCS= 1,008) and in Nov.–Dec. 2020 (NGS= 1,489; NCS= 1,536), in children and adolescents (8-18 years) with parent- (Brief Problem Monitor) and/or child reports (Patient-Reported Outcomes Measurement Information System®). Results show significantly greater proportions of worrisome internalizing problems (based on validated cut-offs) and significantly higher internalizing problems mean levels from pre-pandemic to pandemic measurements in the general population. These levels stabilized or decreased over the course of the pandemic. In the clinical sample, we found an increase in child-reported internalizing problems measures over the course of the pandemic, but parents reported no differences in internalizing problems measures over the course of the pandemic, nor from pre-pandemic to during the pandemic. Overall, the findings indicate that children and adolescents of both the general and clinical population were affected negatively by the pandemic in terms of their internalizing problems. Attention is therefore warranted to investigate what long-term effects this may cause and to monitor if internalizing problems return back to pre-pandemic levels or if they remain elevated post-pandemic.

Background: The COVID-19 lockdown increases psychological problems in children and adolescents from the general population. Here we investigate the mental and social health during the COVID-19 lockdown in children and adolescents with pre-existing mental or somatic problems. Method: We included participants (8-18 years) from a psychiatric (N = 249) and pediatric (N = 90) sample, and compared them to a general population sample (N = 844). Measures were assessed during the first lockdown (April-May 2020) in the Netherlands. Main outcome measures were Patient-Reported Outcomes Measurement Information System (PROMIS) domains: Global Health, Peer Relationships, Anxiety, Depressive Symptoms, Anger, and Sleep-Related Impairment. Additionally, socio-demographic variables, COVID-19-related questions, changes in atmosphere at home from a parent and child perspective, and children's experiences of lockdown regulations were assessed. Results: On all measures except Global Health, the pediatric sample reported least problems. The psychiatric sample reported significantly more problems than the general population sample on all measures except for Anxiety and Peer Relationships. Having a COVID-19 affected friend/relative and a COVID-19 related change in work situation negatively moderated outcome, but not in the samples with pre-existing problems. All parents reported significant decreases in atmosphere at home, as did children from the general population. Conclusion: We observed significant differences in mental and social health between three child and adolescent samples during the COVID-19 pandemic lockdown and identified COVID-19-related factors influencing mental and social health. Our findings contribute to current and future policies during pandemic related lockdowns regarding the mental and social health of children and adolescents.

ImportanceIt is unknown how a lockdown during the COVID-19 pandemic impacts children’s and adolescents’ mental and social health.ObjectiveTo compare mental and social health of children and adolescents during the COVID-19 lockdown versus before, identify associated factors, describe the change in atmosphere at home and qualitatively assess the impact of COVID-19 regulations on daily life.DesignCross-sectional study comparing two Dutch representative samples of children and adolescents (8-18 years); before COVID-19 (Dec2017-July2018) and during the COVID-19 lockdown (April/May 2020).SettingPopulation-basedParticipantsChildren and adolescents aged 8-18 years (M=13.4, 47.4% male), representative of the Dutch population on key demographics.Exposure(s)COVID-19 pandemic lockdownMain Outcome(s) and Measure(s)Patient-Reported Outcomes Measurement Information System (PROMIS®) domains: Global Health, Peer Relationships, Anxiety, Depressive Symptoms, Anger and Sleep-Related Impairment. Single item on atmosphere at home and open question regarding the impact of the regulations on the child/adolescent’s daily lifeResultsChildren and adolescents reported significantly worse PROMIS T-scores on all domains (absolute mean difference range, 2.1-7.1; absolute 95% CI range, 1.3-7.9) during the COVID-19 lockdown as compared to before COVID-19. More children reported severe Anxiety (during 16.7% vs. before 8.6%; relative risk 1.95; 95% CI 1.55-2.46) and Sleep-Related Impairment (during 11.5% vs. before 6.1%; relative risk 1.89; 95% CI 1.29-2.78). Fewer children reported poor Global Health (during 1.7 vs. before 4.6%; relative risk 0.36; 95% CI 0.20-0.65). More mental and social health complaints during the COVID-19 lockdown were found in children and adolescents growing up in a single-parent family, having ≥three children in the family, a negative change in work situation of parents due to COVID-19 regulations, and having a relative/friend infected with COVID-19. A small effect was found on atmosphere at home during the lockdown compared to before (mean difference, −3.1; 95% CI, −4.1 −−2.1). A large majority (>90%) reported a negative impact of the COVID-19 regulations on their daily life.Conclusions and RelevanceThis study showed that governmental regulations regarding lockdown pose a serious mental and social health threat on children and adolescents that should be brought to the forefront of political decision making and mental health care policy, intervention and prevention.Key pointsQuestionWhat is the impact of lockdown during the COVID-19 pandemic on mental and social health in children and adolescents compared to before COVID-19?FindingsThis population-based study shows that during the COVID-19 lockdown children and adolescents report lower mental and social health, especially on anxiety and depressive symptoms.MeaningIn proposing new COVID regulations (e.g., closing schools) governments should be mindful of the negative impact of a lockdown on mental and social health of children and adolescents.

Context Early treatment of primary congenital hypothyroidism (CH) prevents irreversible brain damage. Contrary to primary CH, outcome studies on central CH are scarce. Most patients with central CH have multiple pituitary hormone deficiencies (MPHD); these patients are also at risk for neonatal hypoglycemia. Objective To assess cognitive and motor outcome in patients with early-treated central CH detected by the Dutch neonatal screening. Methods In this cross-sectional study, primary outcome full-scale intelligence quotient (FSIQ) was measured in patients with MPHD and patients with isolated central CH born between January 1, 1995, and January 1, 2015, with siblings as controls. Secondary outcomes were intelligence test subscales and motor function. Linear mixed models were used to compare both patient groups and siblings, followed by post hoc tests in case of significant differences. Results Eighty-seven patients (52 MPHD; 35 isolated central CH) and 52 siblings were included. Estimated marginal means for FSIQ were 90.7 (95% CI 86.4-95.0) in patients with MPHD and 98.2 (95% CI 93.0-103.5) in patients with isolated central CH. While patients with MPHD scored lower FSIQs than siblings (mean difference –7.9 points, 95% CI –13.4 to –2.5; P = .002), patients with isolated central CH did not. Processing speed was lower in both patient groups than in siblings (mean differences –10.5 and –10.3 points). Motor difficulties occurred significantly more often in patients (33%) versus siblings (5%; P = .004). Conclusion In early-treated central CH, FSIQ is comparable with siblings in patients with isolated central CH, while patients with MPHD have a significantly lower FSIQ. This may be explained by disease-specific consequences of MPHD, such as neonatal hypoglycemia and more severe hypothyroidism.

Sleep problems have a high prevalence and negative daytime consequences in adolescents. Current sleep measures for this age group have limitations. The Patient-Reported Outcomes Measurement Information System (PROMIS®) developed sleep item banks for adults. In a previous validation study, these item banks were adapted to a shortened version for adolescents. The current study aimed to further explore the psychometric properties of the 11-item Sleep-Related Impairment and 23-item Sleep Disturbance item banks in Dutch adolescents. We investigated structural validity by testing item response theory assumptions and model fit; measurement invariance by performing differential item functioning analyses; performance as a computerized adaptive test; reliability by marginal reliability estimates and test–retest reliability (intraclass correlation coefficients and limits of agreement); and construct validity by hypothesis testing. Additionally, we provide mean values for the item banks. The study sample consisted of 1,046 adolescents (mean age 14.3 ± 1.6), including 1,013 high-school students and 33 sleep-clinic patients. The Sleep Disturbance-23 showed lack of unidimensionality, but had sufficient test–retest reliability, and could distinguish between adolescents with and without sleep or health issues. The Sleep-Related Impairment-11 showed sufficient unidimensionality and model fit and was thus tested as a computerized adaptive test, demonstrating an equal amount of reliable measures to the full item bank. Furthermore, the Sleep-Related Impairment-11 could distinguish between adolescents with and without sleep or health issues and test–retest reliability was moderate. The use of both item banks in the full form and the use of the Sleep-related Impairment-11 as a computer adaptive test is recommended.