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) |
Abbreviations: DS Down syndrome, QI quality indicator, ID Intellectual disability
a child physiotherapist, dermatologist, GP, ID physician, psychiatrist
b audiologist, 2 podiatrists, ID physician, ID-specialised dentist, municipal health services doctor, 2 occupational therapists, ophthalmologist, 2 orthoptists, paediatrician, rehabilitation specialist, speech therapist
c 2 dieticians, 2 ID-specialised dentists, 2 ID-specialised nurses, paediatrician, 3 (child) physiotherapists, psychologist, and the two patient organisation representatives
d GP, occupational therapy, dermatology
e dentistry, dietetics, dementia
f physiotherapy for children, speech therapy for children, municipal health service
g dentistry, dermatology, cataract, thyroid
h One of the two patient organisation representatives and one retired participant