Table 7.

Summary of findings: data source and development of QIs

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%)

Abbreviations: DS Down syndrome, QI quality indicator, ID Intellectual disability

^a There was only consensus among the participants about this proposition if the patient representatives were left out of the analysis