Quality of health care according to people with Down syndrome, their parents and support staff—A qualitative exploration

Background: People with Down syndrome (PDS) have complex healthcare needs. Little is known about the quality of health care for PDS, let alone how it is appraised by PDS and their caregivers. This study explores the perspectives of PDS, their parents and support staff regarding quality in health care for PDS. Method: The present authors conducted semi-structured interviews with 18 PDS and 15 parents, and focus groups with 35 support staff members (of PDS residing in assisted living facilities) in the Netherlands. Results: According to the participants, healthcare quality entails well-coordinated health care aligned with other support and care systems, a person-centred and holistic approach, including respect, trust and provider–patient communication adapted to the abilities of PDS. Conclusions: Our findings may be used to improve health care for PDS, and provide insight into how health care could match the specific needs of PDS

Capturing the complexity of healthcare for people with Down syndrome in quality indicators - a Delphi study involving healthcare professionals and patient organisations

BACKGROUND: Insight 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. METHODS: We 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. RESULTS: Participants 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. CONCLUSIONS: We 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