Publications by authors named "M L Luchtenberg"

Background: Increasingly, researchers are involving children and young people in designing paediatric research agendas, but as far as we were able to determine, only one report exists on the academic impact of such an agenda. In our opinion, the importance of insight into the impact of research agendas designed together with children and young people cannot be overstated. The first aim of our study was therefore to develop a method to describe the academic impact of paediatric research agendas.

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Article Synopsis
  • Involving children and young people (CYP) in developing pediatric research agendas (PRAs) is increasingly recognized as important, yet the actual impact of their involvement is not fully understood.
  • A qualitative study with interviews highlighted three main areas of impact: agenda-setting, individual growth, and the need for academic insights, although the latter was less clearly defined by participants.
  • There is a call for better strategies to measure and maximize the positive outcomes from CYP involvement in research, stressing the importance of planning post-patient and public involvement (post-PPI) activities.
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A 45-year-old woman suffering from primary hypothyroidism, previously well substituted with levothyroxine, was urgently referred from Primary Care to Endocrinology due to very elevated thyrotropin, free thyroxine at low limit of normality, very high cholesterol and generalised oedema. Hypothyroidism was suspected as the main aetiology of this clinical condition. A detailed examination showed nephrotic range proteinuria and the patient was finally diagnosed with lupus nephritis.

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Objective: The objective of this study is twofold: first, to describe the methods used when involving children and young people (CYP) in developing a paediatric research agenda and, second, to evaluate how the existing literature describes the impact of involving CYP. We distinguish three forms of impact: impact on the research agenda (focused impact), impact on researchers and CYP (diffuse impact) and impact on future research (research impact).

Design: A narrative review of MEDLINE, PsycINFO, Web of Science and Google Scholar was conducted from October 2016 to January 2022.

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Background: A growing trend in research is to involve co-researchers. It is referred to as Patient and Public Involvement (PPI) and comprises three groups: the patients, the public, and the researchers. Like in adult public involvement, healthy children can also be considered as 'the public'.

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