Abstract
BackgroundInsight into quality of healthcare for people with Down Syndrome (DS) is limited. Quality indicators (QIs) can provide this insight. This study aims to find consensus among participants regarding QIs for healthcare for people with DS.MethodsWe conducted a four-round Delphi study, in which 33 healthcare professionals involved in healthcare for people with DS and two patient organisations’ representatives in the Netherlands participated. Median and 75-percentiles were used to determine consensus among the answers on 5-point Likert-scales. In each round, participants received an overview of participants’ answers from the previous round.ResultsParticipants agreed (consensus was achieved) that a QI-set should provide insight into available healthcare, enable healthcare improvements, and cover a large diversity of quality domains and healthcare disciplines. However, the number of QIs in the set should be limited in order to prevent registration burden. Participants were concerned that QIs would make quality information about individual healthcare professionals publicly available, which would induce judgement of healthcare professionals and harm quality, instead of improving it.ConclusionsWe unravelled the complexity of capturing healthcare for people with DS in a QI-set. Patients’ rights to relevant information have to be carefully balanced against providers’ entitlement to a safe environment in which they can learn and improve. A QI-set should be tailored to different healthcare disciplines and information systems, and measurement instruments should be suitable for collecting information from people with DS. Results from this study and two preceding studies, will form the basis for the further development of a QI-set.
Highlights
Insight into quality of healthcare for people with Down Syndrome (DS) is limited
Our study showed the complexity of capturing healthcare for people with DS in a Quality indicator (QI)-set that is relevant for both healthcare providers and people with DS plus their caregivers
We have taken a solid step in unravelling this complexity and its possible impact on developing QIs, thereby making substantial progress in the development of QIs for healthcare for people with DS
Summary
Insight into quality of healthcare for people with Down Syndrome (DS) is limited. Quality indicators (QIs) can provide this insight. People with DS suffer from a large variety of health problems and have complex healthcare needs, with many different healthcare providers involved [2,3,4,5]. It is widely acknowledged that healthcare for people with DS should be of high quality in order to meet their specific healthcare needs [4, 6, 7]. This is supported by the Convention on the Rights of Persons with Disabilities, advocating high-quality healthcare for people with disabilities, and acknowledging the right for obtaining the highest possible level of health [8]. The World Health Organization formulated six dimensions of healthcare quality: 1) effective (evidence-based and based on needs), 2) efficient (maximising resources, avoiding waste), 3) accessible (timely, geographically reasonable, in a suitable setting), 4) acceptable/patient-centred (taking into account preferences, culture of patient), 5) equitable (same level of quality for everyone) and 6) safe (minimising risk and harm) [11]
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