Jenny T. Van Der Steen

Jenny van der Steen is an epidemiologist working in the field of end-of-life care, and in particular palliative care for nursing home residents with dementia. She is an Editor of Palliative Medicine. She is the lead author of the European Association for Palliative Care (EAPC) white paper on palliative care in dementia, developed on behalf of EAPC with a team of 12 people from 6 countries. It defines palliative care in terms of 11 domains, and it defines optimal palliative care providing 57 recommendations based on evidence and consensus. The original version and translations into Japanese, Russian, Croatian, Arab, Dutch and German are available from: http://www.eapcnet.eu/Themes/ClinicalCare/EAPCWhitePaperonDementia/OriginalVersionandTranslations.aspx Previous research included nationwide observational and intervention studies in patients with dementia and pneumonia. These studies have resulted in a number of publications on, for example, methods to develop and evaluate guidelines, the practice of withholding curative treatment and distressing symptoms also in comparison to parallel work in the US, along with products for clinical practice: guidelines and mortality risk scores. In parallel, methodological work assessed the reliability and validity of important outcome measures. A broader 5-year prospective study on end of life with dementia (Dutch End Of Life with Dementia study, DEOLD, "Zorg bij Dementie") assessed factors associated with decision making, treatments, patient suffering, and family satisfaction. Collaboration with similar projects in Israel, Italy, and Belgium resulted in recommendations in areas where care needs improvement. Other studies on end of life in nursing homes include studies on spirituality, an evaluation of a booklet for families on comfort care, and a study testing properties of outcome measures to assess the experience of end of life with dementia. Recently she started work on selective reporting in science more generally. AMBITION To bring palliative care research to a higher level with a core group of researchers able to perform boundary-crossing research, integrating perspectives as needed from medicine, epidemiology, sociology, psychology, ethics, methodology and the overarching domain of research integrity. Creative yet thorough and independent research is needed to critically examine how to best innovate practice of care at the end of life. Awards 2016 - (2021) Since employment at LUMC, 10 (inter)national prizes for presentations and articles for supervised work (for MSc and PhD students) and as lead author 2017 - ERC Consolidator grant 2010 - prestigious Vidi career award of the Netherlands Organisation for Scientific Research (NWO, Innovational Research Incentives Scheme) http://www.nwo.nl/nwohome.nsf/pages/NWOP_8BCCY3 http://www.emgo.nl/news-and-events/news/86/a-vidi-grant-for-dr-jenny-van-der-steen-/ 2009 - EAPC Young Investigators Award, first prize for an outstanding contribution to palliative care, European Association of Palliative Care http://www.eapcnet.org/Vienna2009/YoungInvestAward.html 2005 - prestigious Veni career award of the Netherlands Organisation for Scientific Research (NWO, Innovational Research Incentives Scheme) http://www.vu.nl/nl/onderzoek/onderzoekers/nwo-vernieuwsingsimpuls-laureaten/veni/index.asp http://www.vu.nl/en/research/topresearchers-at-vu/nwo-iris-laureates/veni/index.asp 2002 - "Volksgezondheidsprijs 2002" for dissertation; best work in public health in the Netherlands, Annual award from the “Vereniging voor Volksgezondheid en Wetenschap" http://www.verenigingvenw.nl/jaarverslag2002.pdf