In Nederland is een instrument nodig om persoonlijk herstel te meten bij mensen met ernstige psychische aandoeningen ten behoeve van Routine Outcome Measuring (ROM). Het doel van het huidige project waarvan verslag wordt gedaan, is om de ervaringen met het gebruik van deze vragenlijst nader te onderzoeken en vast te stellen of het instrument geschikt is gebruik in de praktijk van de GGZ bij ernstige psychische aandoeningen. Presentatie bij de wetenschappelijke symposium ronde II van het 13e Landelijke Phrenos Psychosecongres. Zwolle, Nederland. 23 november 2017.
In Nederland is een instrument nodig om persoonlijk herstel te meten bij mensen met ernstige psychische aandoeningen ten behoeve van Routine Outcome Measuring (ROM). Het doel van het huidige project waarvan verslag wordt gedaan, is om de ervaringen met het gebruik van deze vragenlijst nader te onderzoeken en vast te stellen of het instrument geschikt is gebruik in de praktijk van de GGZ bij ernstige psychische aandoeningen. Presentatie bij de wetenschappelijke symposium ronde II van het 13e Landelijke Phrenos Psychosecongres. Zwolle, Nederland. 23 november 2017.
Introduction: Gastroenteropancreatic neuroendocrine neoplasms (GEPNENs) are often diagnosed in an advanced stage. As the optimal sequence of therapy remains largely unclear, all treatment-related outcomes, including health-related quality of life (HRQoL) prospects, should be assessed according to patients' preferences. Methods: A targeted search was performed in PubMed and EMBASE to identify studies on treatment effect and HRQoL, measured using the EORTC QLQ-C30 tool, in patients with advanced, well-differentiated GEPNENs. Study quality was assessed, and meta-analyses were performed for global health status/QOL and tumour response. Results: The search yielded 1,322 records, and 20 studies were included, examining somatostatin analogues (SSA), peptide receptor radionuclide therapies (PRRT), chemotherapy, SSA-based combination therapies, and targeted therapies. Global HRQoL was stable, and rates for disease stabilisation were moderate to high across all treatments. Meta-analyses for global health status/QOL after SSA treatment were not significant (mean difference: –0.3 [95% CI: −1.3 to 0.7]). The highest pooled overall tumour response rate was 33% (95% CI: 24–45%) for PRRT. The highest pooled clinical benefit rate was 94% (95% CI: 65–99%) for chemotherapy. Conclusion: All treatments appeared beneficial for disease stabilisation while maintaining stable global health status/QOL. High-quality HRQoL reporting was lacking. HRQoL should be a central outcome next to well-established outcomes.
communicative participation, language disordersOBJECTIVE(S)/RESEARCH QUESTION(S) Speech and language therapists (SLTs) are the primary care professionals to treat language and communication disorders. Their treatment is informed by a variety of outcome measures. At present, diagnosis, monitoring of progress and evaluation are often based on performance-based and clinician-reported outcomes such as results of standardized speech, language, voice, or communication tests. These tests typically aim to capture how well the person can produce or understand language in a controlled situation, and therefore only provide limited insight in the person’s challenges in life. Performance measures do not incorporate the unobservable feelings such as a patient's effort, social embarrassment, difficulty, or confidence in communication. Nor do they address language and communication difficulties experienced by the person themselves, the impact on daily life or allow patients to set goals related to their own needs and wishes. The aim of our study is give our patients a voice and empower SLTs to incorporate their patient's perspective in planning therapy. We will Aangemaakt door ProjectNet / Generated by ProjectNet: 08-12-2020 12:072Subsidieaanvraag_digitaal / Grant Application_digitaalDossier nummer / Dossier number: 80-86900-98-041DEFINITIEFdevelop a valid and reliable patient-reported outcome measure that provides information on communicative participation of people with communication disorders and integrate this item bank in patient specific goal setting in speech and language therapy. Both the item bank and the goal setting method will be adapted in cocreation with patients to enable access for people with communication difficulties.STUDY DESIGN Mixed methods research design following the MRC guidance for process evaluation of complex interventions, using PROMIS methodology including psychometric evaluation and an iterative user-centered design with qualitative co-creation methods to develop accessible items and the goal setting method.RESEARCH POPULATION Children, adolescents and adults with speech, language, hearing, and voice disorders.OUTCOME MEASURES An online patient-reported outcome measure on communicative participation, the Communicative Participation Item Bank (CPIB), CPIB items that are accessible for people with language understanding difficulties, a communicative-participation person-specific goal setting method developed with speech and language therapists and patients and tested on usability and feasibility in clinical practice, and a course for SLTs explaining the use of the goal-setting method in their clinical reasoning process.RELEVANCE This study answers one of the prioritized questions in the call for SLTs to systematically and reliably incorporate the clients’ perspective in their daily practice to improve the quality of SLT services. At present patient reported outcomes play only a small role in speech and language therapy because 1) measures (PROMS) are often invalid, not implemented and unsuitable for clinical practice and 2) there is a knowledge gap in how to capture and interpret outcomes from persons with language disorders.
Antimicrobial Resistance (AMR), the ability of micro-organisms to resist antibiotics, is associated with ~4.9 million deaths globally, reported in 2022. In the EU alone, more than 35.000 people die from antimicrobial-resistant infections annually, resulting in loss of life as well as €1.5Bn/year in healthcare costs and productivity losses. Rapid diagnostics tests are needed, current testing takes between 24 hours to a few days (for slow growing microorganisms), delaying patient treatment and severely impacting treatment outcomes. SoundCell BV have developed a technique (TRL5), for real-time detection of bacteria's viability in the presence of antibiotics. Nano-mechanical vibration of an ultrathin graphene sheet correlates to viability of bacteria immobilized on this sheet. Bacterial motion is transferred to this sheet, and movement of this sheet is tracked via a high-speed laser. Living bacteria produce a strong signal, which diminishes when antibiotics kill them. Unaffected by growth rates, results are achieved in one hour with this technique. This technology opens up possibility for rapid diagnostics of antibiotic resistance in patients with infections of slow growing pathogens (such as mycobacteria and yeast). In such cases the time to result is slowest, significantly delaying effective patient treatment. We aim to validate this technique in our clinical microbiology laboratory.
The clubfoot deformity is one of the most common congenital orthopaedic “conditions”. Worldwide approximately 100,000 children are born with unilateral or bilateral clubfoot every year. In the Netherlands the incidence is approximately 175 every year. This three dimensional deformity of the foot involves, equinus, varus, adductus, and cavus . Left untreated the clubfoot leads to deformity, functional disability and pain. Physical impairments of children with clubfoot might lead to limitations in activities and therefore impede a child’s participation. In clinical practice, the orthopaedic surgeon and physiotherapists are regularly consulted by (parents of) clubfoot patients for functional problems such as impaired walking and other daily activities. This does not only affect long-term and physical health of a child, it will also affect the development of social relationships and skills as well. Since walking is a main activity in children to be able to participate in daily life, our previous study (financially supported by SIA Raak Publiek) focussed on gait differences between children with clubfoot and controls. However, differences in gait characteristics do not necessarily lead to functional limitations and restricted participation. Therefore, providing insight in participation and a child’s performance in other activities than walking is necessary. Insight in a child’s participation will also indicate the functional outcome of the treatment, which on its turn could provide essential information concerning a possible relapse.. Early identification of a relapse is important since it could prevent the need for major surgical interventions. The occurrence of a relapse clubfoot will probably also lead to functional differences in the foot as well as problems during activity and participation. Therefore, the main focus of this study is the functional outcomes of physical activities and the characterisation of participation of children with clubfeet in daily activities of childhood.
