Psychometric properties of the pediatric patient-reported outcomes measurement information system item banks in a Dutch clinical sample of children with juvenile idiopathic arthritis

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[theta]). Test-retest 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 0.001). 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.Transplantation and immunomodulatio

The effects of COVID-19 on child mental health:Biannual assessments up to April 2022 in a clinical and two general population samples

BACKGROUND: The COVID-19 pandemic has had an acute impact on child mental and social health, but long-term effects are still unclear. We examined how child mental health has developed since the start of the COVID-19 pandemic up to 2 years into the pandemic (April 2022).METHODS: We included children (age 8-18) from two general population samples (N = 222-1333 per measurement and N = 2401-13,362 for pre-covid data) and one clinical sample receiving psychiatric care (N = 334-748). Behavioral questionnaire data were assessed five times from April 2020 till April 2022 and pre-pandemic data were available for both general population samples. We collected parent-reported data on internalizing and externalizing problems with the Brief Problem Monitor and self-reported data on Anxiety, Depressive symptoms, Sleep-related impairments, Anger, Global health, and Peer relations with the Patient-Reported Outcomes Measurement Information System (PROMIS®).RESULTS: In all samples, parents reported overall increased internalizing problems, but no increases in externalizing problems, in their children. Children from the general population self-reported increased mental health problems from before to during the pandemic on all six PROMIS domains, with generally worst scores in April 2021, and scores improving toward April 2022 but not to pre-pandemic norms. Children from the clinical sample reported increased mental health problems throughout the pandemic, with generally worst scores in April 2021 or April 2022 and no improvement. We found evidence of minor age effects and no sex effects.CONCLUSIONS: Child mental health in the general population has deteriorated during the first phase of the COVID-19 pandemic, has improved since April 2021, but has not yet returned to pre-pandemic levels. Children in psychiatric care show worsening of mental health problems during the pandemic, which has not improved since. Changes in child mental health should be monitored comprehensively to inform health care and policy.</p

Parent Reported Outcomes: Measure development and implementation in pediatric clinical practice

This thesis focusses on parents of a child with a chronic disease or health condition. The main goals of the research reported in this thesis were 1) to get insight into Parent Reported Outcomes (anxiety, depression, Health-Related Quality of Life and distress), 2) the development of a Parent Reported Outcome Measure (ParROM, a questionnaire) and 3) the use Patient Reported Outcome Measures (PROMs) and ParROMs in clinical practice. 1) Results showed that parents, both mothers and fathers, of a child with a chronic disease are at risk for developing psychosocial problems, compared to parents of healthy children. 2) Therefore, it is important for healthcare professionals to know how parents are doing and whether they need or want support. To screen parental distress and everyday problems in an efficient and reliable way, we developed the Distress Thermometer for Parents (DT-P) and collected Dutch normative data. 3) In the last part of this thesis, implementation and feedback of PROMs and ParROMs in daily clinical practice using the KLIK portal (www.hetklikt.nu) are described. Healthcare professionals should assess both mothers and fathers on an individual level, structurally monitor their well-being and ask about concrete, everyday problems instead of overall functioning. This could be achieved by implementing ParROMs like the DT-P in pediatric clinical practice. ParROMs can be administered online using the KLIK PROM portal. Using the DT-P, the ultimate goal in supporting parents in pediatrics can be achieved: offering the right interventions at the right time by the right professional

Health related quality of life in Dutch infants, toddlers, and young children

Contains fulltext : 174753.pdf (publisher's version ) (Open Access)BACKGROUND: The purpose of this study is to provide Dutch normative data and to assess internal consistency and known-groups validity for the TNO AZL Preschool Children Quality of Life (TAPQOL) and the acute version of the generic Pediatric Quality of Life Inventory (PedsQL 4.0) in Dutch young children aged 0-7 years. METHODS: Participants were selected from a panel of a large Dutch market research agency. A sample of 794 parents (response rate 61%, 39% fathers) of children (53% boys) from the general Dutch population, completed an electronic version of the TAPQOL (N = 227 infants aged 0-1 years) or PedsQL 4.0 (N = 293 toddlers aged 2-4 years and N = 274 young children aged 5-7 years). RESULTS: Except for the 'stomach' scale (alpha = .39), the TAPQOL showed acceptable to excellent internal consistency (alpha = .60-.88). The PedsQL 4.0 showed acceptable to excellent reliability in children aged 2-4 years (alpha = .60-.88) and in children aged 5-7 years (alpha = .76-.90). Children with a chronic health condition had lower scores than healthy children on 3 out of 12 domains of the TAPQOL (p = .001-.013) and on 2 out of 6 domains of the PedsQL 4.0 for children aged 2-4 years (p = .016-.04). The PedsQL 4.0 differentiated on all domains (p < .05) between children aged 5-7 years with and without a chronic health condition. CONCLUSION: In Dutch children aged 0-7 years old, HRQoL can be relialy measured with the TAPQOL and the PedsQL 4.0. However, it remains unclear whether these HRQoL instruments can distinguish between healthy children and children with a chronic health condition under the age of 5

Collaboration between practice, policy and research in local public health in the Netherlands

OBJECTIVE: The collaboration between policy, practice, and research in local public health was studied in a multiple case study. The assumption is that collaboration will result in more solid evidence and higher quality standards in public health. METHODS: First, collaboration barriers were studied by analysing the work cycles of the three domains, which are considered to operate as niches. Actors at the administrative, institutional, and individual levels were identified. Theories that describe processes of the convergence of the three niches through practical strategies were sought. Finally, the application of the practical strategies in six cases was evaluated. RESULTS: When administrative, institutional, and individual changes develop in a similar fashion and in parallel with each other, the likelihood of successful collaboration that goes beyond the initial period is greater. The findings suggest that organisational development (OD) strategies that address collaboration at the institutional level make a relatively strong contribution. CONCLUSIONS: Top level consultations just after local elections, investments in OD strategies and a new kind of accountability in public health are recommended. The assumption that successful collaboration contributes to enhanced effectiveness, efficiency, and efficacy of public health could not yet be unequivocally confirmed. AD - Academic Collaborative Centre of Public Health Limburg, Maastricht, The Netherlands. [email protected]

Samenwerking tussen beleid, praktijk en onderzoek in de publieke gezondheidszorg; resultaten van een multiple-case studie.

Collaboration between practice, policy and research in local public health: results of a multiple case studyto find the right method of working within the academic collaborative centres for public health a multiple case study was implemented. Six cases of intended collaborations between public health policy, practice and research are included. The study focuses on the questions what barriers are preventing an interlinked development, how these barriers can be overcome, and whether collaboration will result in more solid evidence in public health. The research method contains 1. An analysis of work cycles; 2. A description of stakeholders; 3. A decision on practical strategies based on theory and experts’ opinion; 4. An evaluation of the application of practical strategies in six cases. The results showed that successful collaboration between the niches can be achieved when various practical strategies are applied at three system levels, i.e. The administrative, institutional and individual level. Successful collaboration seems to contribute to enhanced public health evidence. We conclude that coherence between the three system levels of the three niches is necessary. Coherence means that there are horizontal connections between the actors of policy, practice and research at each system level and vertical connections between the actors of the system levels. Keywords: local public health policy, collaborative networks, evidence-based public health