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 |
---|---|---|---|---|---|---|
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®) [42–44] | 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 |
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 | |
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 | |
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 |
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 |
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) [67–73] | 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 |