Towards quality indicators for health care for people with Down syndrome, and beyond

Research output: ThesisDoctoral Thesis

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Down syndrome (DS) is related to intellectual disability and a combination of behavioural patterns and physical health problems. As a result of this, people with DS are reliant on a large variety of supports and services. Health care services are one of these. Because of their specific health care needs, high quality health care for people with DS is vital. Quality indicators (QIs) can contribute to this quality. QIs are measurable and carefully defined items of health care that provide insight into health care quality. QIs may identify directions for health care reforms, inform clinical decisions, and help patients finding the needed care. However, QIs providing insight into health care for people with DS are still to be developed. This doctoral thesis provides an empirical basis and a first draft of such QIs. It also gives practical recommendations for the further development and actual use of the QIs. The thesis is based on literature study, semi-structured interviews involving people with DS and their parents, focus groups with support staff working in assisted living facilities, and a consensus method (Delphi study) involving health care professionals and patient organisations. This resulted in 46 potential QIs, grouped into three main quality dimensions: Effectiveness (e.g. adequate and timely treatment of health problems), Organisation of care (e.g. coordination, continuity and accessibility), and Person-centredness (e.g. personal preferences and abilities are taken into account). Additionally, the thesis reflects on the meaningfulness of such QIs for health care specifically for people with DS, but also for other people with complex needs and the general population. The thesis also puts the QIs in a wider perspective: in the context in which people with DS live, and in the context of (integrated) health care systems. The thesis concludes that QIs providing insight into the mentioned quality dimensions are important for improving health care for people with DS. However, the actual use of QIs may be hampered by registrational burden, and the extent to which quality information is made public should be carefully balanced. Furthermore, it is noted that not only QIs, but also additional innovations, within and outside health care, may contribute to making a change in the lives of people with DS.
Original languageEnglish
QualificationDoctor of Philosophy
  • de Vries, Esther, Promotor
  • Delnoij, D.M.J., Promotor
  • Coppus, Antonia M. W., Co-promotor, External person
  • Klazinga, N.S., Member PhD commission, External person
  • Meijboom, Bert, Member PhD commission
  • van den Muijsenbergh, M.E.T.C., Member PhD commission, External person
  • de Winter, J. P., Member PhD commission, External person
  • Braspenning, J.C., Member PhD commission, External person
Award date2 Nov 2022
Place of PublicationEde
Print ISBNs978-90-832727-3-3
Publication statusPublished - 2 Nov 2022


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