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Table 5 Summary of findings: Defining purposes and identifying QI-topics

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

Theme Consensus about (Likert-scale questions)
or
Majority agreed that (multiple choice / open questions)
Round(s) in which theme was addressed
Purpose of QIs QIs should:
• provide people with DS and their caregivers with information on where to find suitable healthcare (providers);
• provide healthcare professionals with information on where to find suitable healthcare (providers);
• be used to improve healthcare for people with DS on a national level;
• be used to improve healthcare for people with DS delivered by their organisation (e.g. health centre, hospital, department), by using the QIs as input for (interdisciplinary) reflective meetings with colleagues, for short term evaluation of healthcare delivery on the patient levela, or for adapting protocols;
• be used as input for developing guidelines;
• be used for inspection and control by national/governmental or intra-organisational authorities; and
• be used to reduce differences in quality of provided healthcare by different providers
1,2,3
(more detailed information in Supplementary Table 1, Additional file 1)
Quality domains The QI-set should cover:
• Coordination (both within and between organisations and disciplines) of healthcare for people with DS, including professional collaboration and agreements, and professional-caregiver collaboration;
• Transition from paediatric towards adult healthcare;
• Effectiveness, including expertise of healthcare professionals and timely detection of health problems;
• Person-centeredness, including the social system of a person with DSa.
• Quality of life, daily functioning, autonomy, and participation in society;
• Safety;
• Clinical outcomes (e.g. blood screening); and
• Adherence to guidelines.
1,2,3
(more detailed information in Supplementary Table 2, Additional file 1)
Healthcare disciplines / services • Concerning children, the QI-set should include:
Down team, paediatrics, physiotherapy, speech therapy, dietetics, psychological/psychiatric care, dental hygiene, specialised dentistry, audiology (screening), and family supportb;
• Concerning adults, the QI-set should include:
Down team, ID physician, dietetics, psychological/ psychiatric care, dental hygiene, palliative/geriatric care, general practitioner, audiology, and a case-manager.
• QI-set should be sensitive to different healthcare needs in different life phases
1,2
(more detailed information in Supplementary Table 3, Additional file 1)
Number of QIs in set • QIs should include all disciplines involved in healthcare for people with DS
• The QI-set should contain a basic set and additional specialised modules
• Each module should contain a maximum of ten QIs
• Disciplines are more important to be included in the QI-set if:
o more people with DS need them
o they contribute more to QoL
o there are more doubts about the quality provided by the discipline
2,3,4
(more detailed information in Supplementary Tables 3 and 4, Additional file 1)
Type (structure / process / outcome) of QIs in set The QI-set should include an (almost) evenly distributed amount of structure, process and outcome QIs. 2,3
(more detailed information in Supplementary Table 4, Additional file 1)
  1. Abbreviations: DS Down syndrome, QI quality indicator, ID Intellectual disability, QoL Quality of life
  2. a Only consensus if patient organisation representatives were left out of analysis
  3. b No consensus if patient organisation representatives were left out of analysis