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Table 5 Overview of identified indicator sets described by selected studies and general information about the sets

From: In search of quality indicators for Down syndrome healthcare: a scoping review

Indicator set Described by selected study Country of origin/development Target population Number of indicators (sub-indicators) and Topics covered by indicators in set Organisational level WHO quality domains
1 Ambulatory Care Sensitive Conditions (ACSC) [39, 40] Glover & Evison, 2013 [41] Canada Persons with an intellectual disability 15: “conditions which, given ‘effective management’ at the primary care level, should not normally result in an admission to hospital” Primary care Effective, efficient, accessible
2 Hospital Admissions for Ambulatory Care Sensitive Conditions (ACSC) [41] Glover & Evison, 2013 [41] UK People with learning disabilities (LD) 3 (22): Acute conditions, Chronic conditions, immunisable conditions. National health system of England Effective, efficient, accessible
3 Healthcare Effectiveness Data and Information Set (HEDIS®) [4244] Shireman et al., 2010 [42] USA Adults with developmental disabilities with Diabetes 5: HbA1c testing, eye examinations, lipid testing, microalbuminaria screening, primary care visits National/whole care chain Effective, patient-centered
4 The Health Equalities Framework (HEF) [45, 46] Thomas, 2014 [45] UK People with learning disabilities (LD) 5 (29): Social indicators, Genetic and biological indicators, Communication difficulties and reduced health literacy indicators, Personal behaviour and lifestyle indicators, Deficiencies in service quality and access indicators Specialist multidisciplinary learning disability services Efficient, accessible, patient-centered, equitable, safe
5 Measurement of Processes of Care (MPOC-28) [47, 48] Granat et al., 2002 [47] Sweden Families with children with disabilities 4 (28): Enabling and partnership, General & specific information (given by care provider), Co-ordinated and comprehensive care, Respectful and supportive care Child habilitation services departments Efficient, accessible, patient-centered
6 National Core Indicators (NCI) [4951] Bradley et al., 2007 [49] USA Children and adults with developmental disabilities and their families 5 (94): Individual outcomes (satisfaction, choice and decision making, self-determination, community inclusion, work, relationships), Health welfare and rights (safety, health, medication, wellness, restraints, repsect/rigths), System performance (Sevice coordination, Access, staff stability), Family indicators (choice & control, family outcomes, information & planning, satisfaction, family involvement, community connections, access & support delivery). Public systems for people with intellectual and developmental disabilities Accessible, patient-centered, equitable, safe
7 Quality Indicators ~ February 2004 Learning Disabilities (NHS-QIS) [52, 53] Campbell, 2008 [54]
NHS QIS, 2004 [52]
UK, Scotland Children and adults with learning disabilities in Scotland 6 (60): Involvement of Children and Adults with Learning Disabilities and Their Family Carers through Self-Representation and Independent Advocacy, Promoting Inclusion and Wellbeing, Meeting General Healthcare Needs, Meeting Complex Healthcare Needs, In-patient Services - Daily Life, Planning Services and Partnership Working National Health System of Scotland Effective, efficient, accessible, patient-centered, equitable, safe
8 Health indicators for people with intellectual disabilities (Pomona-project) [55, 56] van Schrojenstein L-de Valk et al., 2007 [56] (snowball) Europe People with intellectual disabilities in Europe 4 (18): Demographics, Health status, Determinants of health, Health systems. European/national Effective, efficient, patient-centered, equitable
9 Quality indicators for preventive care [5759] Coker et al., 2012 [57] USA Children aged 10 months to 5 years old who are at risk for developmental delay 4 (14): Parents' Evaluation of Developmental Status, Comprehensive and coordinated care, Family-centered and culturally effective care, medical home. Preventive care Effective, efficient, accessible, patient-centered
10 Quality care indicators of diabetes for people with ID [60] [61] Taggart et al., 2013 [60] UK People with intellectual disabilities and diabetes 1(6): HbA1c checked, Lipids/cholesterol, Eye exam, Weight change, Physically active, Attended emergency department related to DM Diabetes care chain Effective, efficient, patient-centered
11 Six Core Outcomes: Key Measures of Performance [6266] Spears, 2010 [62] USA Children with special healthcare needs 6: Shared decision making, Coordinated care, Adequate insurance, Screening for special healthcare needs, Community-based services, Services for transitions. States' and Territories' service systems Effective, efficient, accessible, patient-centered
12 Quality and Outcomes Framework Indicators for learning disabilities (QOF) [6773] Ashworth, 2012 [67] UK People with learning disabilities in the UK 1(2): Learning Disability register, % Patients in register with Down's Syndrome aged 18 and over who have a record of blood TSH in the previous 15 months. Primary care Effective, efficient, equitable
13 Quality indicators measuring the quality of the medication use process for people with intellectual disabilities [37, 74] Flood & Henman, 2014 [37] Ireland People ageing with intellectual disabilities 5 (37): Patient experience, access to care, continuity of care, equity, patient safety, effectiveness, appropriateness, assessment. Medication use process care chain Effective, accessible, patient-centered, equitable, safe