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Table 1 Summary of outcomes of previous study

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

Outcomes from previous studya
Method and participants:
Qualitative design including semi-structured interviews with people with DS and with parents, and focus groups with support staff members (of people with DS living in assisted living facilities)
Summary of findings:
- Participants mentioned a large variety of healthcare and other services people with DS used. Among others: ‘Down team’, GP, dentist, psychologist, physiotherapist, speech therapist, ear nose throat physician, ophthalmologist, family support, educational support.
- According to participants, good healthcare is:
o Person-centred: The person with DS and his/her values and preferences are central; The personal situation and life stage of the person with DS are taken into account and caregivers are involved; Communication between professional and person with DS (and his/her caregivers) is respectful and adapted to the abilities of the person with DS.
o Effective, efficient and accessible: Timely recognition of health problems, Healthcare professionals with DS-expertise are nearby; Information about available care is present.
o Multidisciplinary, well-coordinated and integrated: It includes actors outside healthcare (e.g. school, work); Information is shared (between professionals); Consultations are planned in a synchronized manner; Transition from paediatric to adult healthcare and services proceeds smoothly.
  1. Abbreviations: DS Down syndrome, GP General practitioner
  2. a Qualitative exploration of opinions and experiences of people with DS, parents, and support staff regarding healthcare quality [21]