262 Chapter 9 Table 1. (continued) 7 Psychometrics of the pediatric PROMIS measures in hemophilia To assess the feasibility, measurement properties, and outcomes of eight PROMIS pediatric measures for boys with hemophilia. Boys (8-17y) treated for mild to severe hemophilia A or B in one of the Hemophilia Treatment Centers in the Netherlands Participants (N=77) were asked to complete the following measures online: • Socio-demographic questionnaire • PROMIS pediatric measures: v2.0 Pain Interference, v2.0 Fatigue, v2.0 Anxiety, v2.0 Depressive Symptoms, v2.0 Mobility, v2.0 Peer Relationships, v2.0 Anger 9a scale, and V1.0 Global Health scale (7+2) • Legacy instruments: Haemo-QOL and PedHAL • Floor and ceiling effects of the PROMIS pediatric measures were substantially less compared to the legacy instruments. • The number of completed items in the selected set of PROMIS pediatric measures was lower compared to the legacy instruments. • The reliability of the PROMIS pediatric measures was good, except for the PROMIS CAT Mobility. • HRQoL of boys with hemophilia is comparable to the Dutch general population, except for the domains Pain Interference and Mobility (more complaints). The PROMIS pediatric measures are valid alternatives to the well-known legacy instruments. Part 3. Patient Reported Experience Measures Chapter Short title Aim Participants Methods Main findings & conclusion 8 Systematic review PREMs To identify and synthesize evidence on the use of PREMs in pediatric health care settings and their characteristics. Not applicable PRISMA guidelines were followed during the conduct and reporting of this review: • A search strategy was applied to MEDLINE, EMBASE, PsychINFO, Cochrane Library, and CINAHL to identify relevant articles. • Gray literature was searched to capture real-word implementation of PREMs. • Articles were screened by two reviewers • Data was extracted, synthesized, and tabulated. • Risk of bias was assessed for all identified studies. • 83 studies reported on the use of PREMs in pediatrics. • Most included studies were conducted in the United States of America (48 studies). • 39 different PREMs were identified in the included studies and were used in different healthcare settings. • 10 additional PREMs were identified in gray literature. • Majority of the PREMs were generic (34/39 PREMs) • Most PREMs were designed to be completed by proxy (23/39 PREMs). • The number of items/domains in the identified PREMs ranged from 7 to 89 resp. 3 to 10. • Communication was the most prominent domain. This review provides an overview of the current PREMs available for use in pediatrics. These findings can guide clinicians and researchers to use appropriate PREMS to implement patient-centered care in pediatrics.
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