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Table 7 Summary of findings: data source and development of QIs

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

Theme Answers to multiple choice / open questions (rows 1 & 3) and one Likert-scale question (row 2) Number (%) of participants Round(s) in which theme was addressed
Data source - Data for the QIs should be extracted from the electronic medical records of patients 26 (81%) 1 (n = 32)
- Data for the QIs should be obtained via questionnaires for patients/parents. 25 (78%)
- Burden for people with DS and their caregivers should be as low as possible when measuring quality;
- People with DS/caregivers as well as healthcare professionals should deliver information for the QIs;
- Parents/other caregivers should themselves be responsible for documenting and keeping track of needed healthcare for the person with DS;
- When people with DS are not able to provide quality information themselves, their legal representative should decide who is eligible to provide this information.
- A dialogue between healthcare professional and person with DS can be used as instrument for measuring customer satisfactiona
Percentages are not applicable: consensus was achieved 4 (n = 26)
(more detailed information in Supplementary Table 5, Additional file 1)
Development of QIs - With involvement of people with DS 23 (83%) 2 (n = 28)
- With involvement of parents/caregivers 26 (93%)
- With involvement of healthcare professionals 27 (97%)
- With involvement of health insurers 6 (21%)
- I am willing to participate in development 9 (31%)
- Whether I am willing to participate depends on the time and effort needed for participation 17 (59%)
- I am not willing to participate 3 (10%)
  1. Abbreviations: DS Down syndrome, QI quality indicator, ID Intellectual disability
  2. a There was only consensus among the participants about this proposition if the patient representatives were left out of the analysis