Personal information

Jenny van der Steen

Jenny van der Steen is an epidemiologist working in the field of care for nursing home residents with dementia, and in the field of palliative care. She is an Editor of Palliative Medicine, the highest ranking palliative journal.

As of April 1, 2016, she continued most of her research at Leiden University Medical Center, Department of Public Health and Primary Care. She continues to be involved in projects at the Department of Public and Occupational Health of the VU University Medical Center Amsterdam.

She is the lead author of the European Association for Palliative Care (EAPC) white paper on palliative care in dementia, developed on behalf of with a team of 12 people from 6 countries. It defines palliative care in 11 domains, optimal palliative care in 57 recommendations based on evidence and consensus, and is available as open access from the Palliative Medicine and EAPC websites.  This hallmark paper conceptualizes palliative care in dementia. Web of Science highly cited paper” (top 1% of its academic field and publication year.)

Her research includes nationwide observational and intervention studies in patients with dementia and pneumonia. These studies have resulted in a number of publications on methods to develop and evaluate guidelines, the practice of withholding curative treatment, prognostic models for mortality from nursing home-acquired pneumonia, distressing symptoms related to pneumonia, and reliability and validity of instruments, along with products for clinical practice: guidelines and mortality risk scores.

A  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 results 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 of specific instruments to assess end of life with dementia. She recently also started research on selective reporting in science more generally.

Main awards

2017 European Research Council (ERC) Consolidator grant ("awarded to outstanding researchers")

2017 - Chaired our symposium at the largest conference on gerontology and geriatrics ever (IAGG/GSA, San Francisco) which the organising committee assigned the status of a "presidential symposium"

2014 - 2017 National prizes (3) and 2 nominations for 3 of my PhD-students

2012 and 2013 Aspasia supplements to Vidi career award

2010 - Vidi career award of the Netherlands Organisation for Scientific Research (NWO, Innovational Research Incentives Scheme)

2009 - EAPC Young Investigators Award, first prize for an outstanding contribution to palliative care, European Association of Palliative Care

2005 - Veni career award of the Netherlands Organisation for Scientific Research (NWO, Innovational Research Incentives Scheme) 

2002 - "Volksgezondheidsprijs 2002" for dissertation; best work in public health in the Netherlands, Annual award from the “Vereniging voor Volksgezondheid en Wetenschap"


Other websites: (Dutch) (partly in Dutch)