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