Skip to main content

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]


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]


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]


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]


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]


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]


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)


People with intellectual disabilities in Europe

4 (18): Demographics, Health status, Determinants of health, Health systems.


Effective, efficient, patient-centered, equitable

9 Quality indicators for preventive care [5759]

Coker et al., 2012 [57]


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]


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]


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]


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]


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