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Table 6 Summary of findings: current and future use of indicators

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 (first 4 rows) and one Likert-scale question (last row) Number (%) of participants Round(s) in which theme was addressed
Willingness to register - My colleagues (from the same profession) will not be willing to register (extra) data for the QI-set 5a (16%) 1 (n = 32)
- My colleagues will only be willing to register (extra) data for the QI-set if this would only mean ‘clicking a few extra boxes’ 14b (44%)
- My colleagues will be willing to register (extra) data. 13c (41%)
Current collection of data by own organisation - Information on adherence to guidelines 10 (31%) 1 (n = 32)
- Transition from paediatric to adult healthcare 3 (9%)
- Clinical outcomes 10 (31%)
- Quality of life / daily functioning / participation 9 (28%)
- Coordination within the organisation 5 (16%)
- Coordination between organisations/ disciplines 1 (0%)
- Whether organisation is findable for potential patients 4 (10%)
- Accessibility 6 (19%)
- Expertise of healthcare professionals 7 (22%)
- Person-centeredness 9 (19%)
- Equity 4 (10%)
- No quality information collected 13 (41%)
- N/A 5 (16%)
Current use of QIs - Indicators regarding general internal improvement of healthcare (non DS-specific) or audits, 11 (34%) 1 (n = 32)
- Indicators regarding client satisfaction, 6 (19%)
- Indicators regarding discipline/condition-specific (non DS-specific) issues 4g (13%)
- No indicators 11 (34%)
- N/A 2h (6%)
Current use of guidelines - The multidisciplinary medical guideline for children with DS 13 (38%) 1 (n = 32)
- A general guideline for adults with DS, developed by the organisation I work for 2 (6%)
- Discipline-specific guideline(s) for the general population 7d (22%)
- Discipline-specific guideline(s) for people with ID 4e (13%)
- Discipline-specific guideline(s) for people with DS 7f (22%)
- No guidelines 4 (13%)
Transparency - QIs should provide quality information on departmental or organisational level (not on individual professionals’ level)
- Providers should be obliged to publish this quality information on their websites, if they want to be seen as ‘DS-specialised’.
- QIs should stimulate healthcare improvement, not judge healthcare professionals
- Privacy of professionals should be protected just as much as privacy of patients.
Percentages are not applicable: consensus was achieved 3 (n = 29), 4 (n = 26)
(more detailed information in Supplementary Table 5, Additional file 1)
  1. Abbreviations: DS Down syndrome, QI quality indicator, ID Intellectual disability
  2. a child physiotherapist, dermatologist, GP, ID physician, psychiatrist
  3. b audiologist, 2 podiatrists, ID physician, ID-specialised dentist, municipal health services doctor, 2 occupational therapists, ophthalmologist, 2 orthoptists, paediatrician, rehabilitation specialist, speech therapist
  4. c 2 dieticians, 2 ID-specialised dentists, 2 ID-specialised nurses, paediatrician, 3 (child) physiotherapists, psychologist, and the two patient organisation representatives
  5. d GP, occupational therapy, dermatology
  6. e dentistry, dietetics, dementia
  7. f physiotherapy for children, speech therapy for children, municipal health service
  8. g dentistry, dermatology, cataract, thyroid
  9. h One of the two patient organisation representatives and one retired participant