Deze eindrapportage van het project ‘competenties van de zorgprofessional van de toekomst’ is uitgevoerd in opdracht van de Health Hub Utrecht, Coalitie Aantrekkelijke Arbeidsmarkt. De rapportage is tot stand gekomen met inbreng van een groot aantal mensen uit zorg, welzijn en opleidingen, die in dialoogsessies mee hebben gedacht over hoe de zorgprofessional van de toekomst goed toegerust kan worden. Met elkaar is gezocht naar de uitdagingen die zorg en welzijn, en opleidingen denken tegen te komen richting 2030 en er is nagedacht over richtingen die bijdragen aan het goed toerusten van deze professionals. De tweede publicatie betreft het tussenrapport: Competenties van de zorg- en welzijnsprofessional van de toekomst: Tussenrapportage ter afsluiting van fase 1. (Drs. J. Dijkstra RN, dr. M. Jacobs, Drs. B. Berkhout, 2023)
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Heritable Connective Tissue Disorders (HCTD) show an overlap in the physical features that can evolve in childhood. It is unclear to what extent children with HCTD experience burden of disease. This study aims to quantify fatigue, pain, disability and general health with standardized validated questionnaires.METHODS: This observational, multicenter study included 107 children, aged 4-18 years, with Marfan syndrome (MFS), 58%; Loeys-Dietz syndrome (LDS), 7%; Ehlers-Danlos syndromes (EDS), 8%; and hypermobile Ehlers-Danlos syndrome (hEDS), 27%. The assessments included PROMIS Fatigue Parent-Proxy and Pediatric self-report, pain and general health Visual-Analogue-Scales (VAS) and a Childhood Health Assessment Questionnaire (CHAQ).RESULTS: Compared to normative data, the total HCTD-group showed significantly higher parent-rated fatigue T-scores (M = 53 (SD = 12), p = 0.004, d = 0.3), pain VAS scores (M = 2.8 (SD = 3.1), p < 0.001, d = 1.27), general health VAS scores (M = 2.5 (SD = 1.8), p < 0.001, d = 2.04) and CHAQ disability index scores (M = 0.9 (SD = 0.7), p < 0.001, d = 1.23). HCTD-subgroups showed similar results. The most adverse sequels were reported in children with hEDS, whereas the least were reported in those with MFS. Disability showed significant relationships with fatigue (p < 0.001, rs = 0.68), pain (p < 0.001, rs = 0.64) and general health (p < 0.001, rs = 0.59).CONCLUSIONS: Compared to normative data, children and adolescents with HCTD reported increased fatigue, pain, disability and decreased general health, with most differences translating into very large-sized effects. This new knowledge calls for systematic monitoring with standardized validated questionnaires, physical assessments and tailored interventions in clinical care.
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BACKGROUND & AIMS: Dietetic interventions contribute to certain health objectives and other outcomes, but are mostly part of a multimodal and multidisciplinary approach what makes evaluating the actual effects of dietitians' involvement rather complex. Although monitoring and outcome evaluation (M&OE) can provide routine data to prove the effectiveness of dietetic interventions, this has not been established yet in different dietetic settings.METHODS: A comprehensive framework for M&OE in dietetics was developed by dietetic experts from five European higher education institutes for dietetics in the course of the EU sponsored project "Improvement of Education and Competences in Dietetics (IMPECD)".RESULTS: Firstly, clear definitions on M&OE are proposed to facilitate the use of consistent terminology, with a specific emphasis on the term "impact" covering macro-level outcomes such as cost-effectiveness. Secondly, the Dietetic Care Process (DCP) was merged into a logic model to demonstrate the position of M&OE in relation to intervention planning and implementation, in both group and individual settings. Thirdly, selecting the appropriate indicators is indispensable to monitor and evaluate outcomes, and requires a high level of dietitians' critical reasoning. A categorized overview of indicators is provided to support this process. Lastly, the consortium developed a checklist to give dietitians a handle on what elements could be included in their M&OE plan and trigger them to perform M&OE in practice.CONCLUSIONS: Innovative M&OE models may help dietitians to demonstrate their effectiveness in improving clinical outcomes and justify their role in health care.
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