Background
Which indicators are available to assess the clinical and organisational quality of medical DS healthcare?
More specifically:
Methods
Search strategy
Population: | Outcomes: |
---|---|
1 Intellectual Disability 2 Mentally Disabled Persons 3 Developmental Disabilities 4 Down Syndrome
5 Developmental disorder*
6 Mental deficien*
7 Mental retard*
8 Down’s syndrome
9 Trisomy 21
10 (1 OR 2 OR 3 OR 4 OR 5 OR 6 OR 7 OR 8 OR 9) (Google Scholar: 1 OR 2 OR 3 OR 4 OR 5 OR 6 OR 7) 19 (NOT) Pregnancy | 11 Quality Indicators, Health Care 12 Quality Improvement 13 Total Quality Management 14 Benchmarking
15 Clinical indicator*
16 Quality measure*
17 Quality assessment*
18 (11 OR 12 OR 13 OR 14 OR 15 OR 16 OR 17) (Google Scholar: 11 OR 16) |
Study selection
Inclusion criteria: • Studies concerning the development, implementation, application or evaluation of (structure, process or outcome) indicators for measuring quality of (chronic) medical healthcare for people with Down syndrome or intellectual disabilities as the main topic • Studies where specific quality indicators are well-defined including the population they apply to • All kinds of scientific publications: journal articles, theses, books, etc. |
Exclusion criteria: • Studies where quality indicators itself are not the main topic • Studies not concerning medical care, but other forms of care (e.g. residential care) • Studies concerning general aspects of quality indicators (specific indicators are not well-defined) • Studies concerning quality indicators of general healthcare (specific population is not described) • Studies primarily focusing on the development of a tool, instrument or questionnaire without the purpose of being an indicator for measuring quality of healthcare • Studies concerning prenatal or new-born screening/care • No abstract/full text available • Written in a language that no one in the research team masters (i.e. not English, Dutch, French, German) |
Data extraction
Categories | Items |
---|---|
1) Aim, relevance and organisational context | - Aim is clearly defined, - Topic relevance is specified, - Organisational configuration (level) is specified, - Quality domain is specified, - Type and size of care process the indicator set applies to is defined. |
2) Involvement of stakeholders | - Relevant healthcare professionals are involved in developing the set, - Relevant other are involved, - The indicator set is formally established (or owned), e.g. by a patient or professional association. |
3) Scientific evidence | - Underpinning evidence for the set is systematically searched, - The set is based on a guideline, - The Used evidence is qualitatively good. |
4) Further underpinning, formulation and use | - Denominator and numerator are clearly described, - Target population is specifically and clearly defined, - A risk adjustment strategy (for different patient groups) is present, - Validity of the set is proven or argued, - Reliability of the set is proven or argued, - Power of the set is proven or argued, - The set is tested in practice, - The effort needed for data collection is taken into account, - The set includes an instruction for interpretation of the results. |
Consultation exercise
Results
Number of times mentioned by stakeholders (N = 19) | |
---|---|
Why are indicators for DS relevant? | |
To define care
| 8 |
For coordination
| 7 |
For quality improvement
| 8 |
For comparability of care providers
| 14 |
To check availability
| 3 |
Additional studies? | |
No
| 11 |
Yes but not about indicators
| 8 |
Research question 1: Which indicator sets are available and which indicators do they contain?
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 |
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 | |
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 | |
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 | |
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 | |
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 | |
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 |
Research question 1a: Which components and levels of care are covered by the indicators?
Research question 1b: Of which type (structure, process and outcome) are the indicators?
Type of indicator→ | Structure | Process | Outcome | Mix |
---|---|---|---|---|
Indicator sets ↓ | ||||
1 ACSC CAN | 0 | 0 | 100% (15) | 0 |
2 ACSC UK | 0 | 0 | 100% (3) | 0 |
3 HEDIS DM | 0 | 100% (5) | 0 | 0 |
4 HEF | 0 | 40% (2) | 20% (1) | 40% (2)a
|
5 MPOC-28 | 0 | 100% (4) | 0 | 0 |
6 NCI | 20% (1) | 20% (1) | 20% (1) | 40% (2)b
|
7 NHS-QIS | 33% (2) | 17% (1) | 0 | 50% (3)c
|
8 POMONA | 0 | 0 | 75% (3) | 25% (1)d
|
9 Preventive care | 0 | 75% (3) | 25% (1) | 0 |
10 Diabetes UK | 0 | 0 | 0 | 100% (1)e
|
11 Six core outcomes | 33% (2) | 67% (4) | 0 | 0 |
12 QOF | 50% (1) | 0 | 50% (1) | 0 |
13 Medication use process | 0 | 20% (1) | 20% (1) | 60% (3)f
|
Total | 86 (6) | 439 (21) | 420 (26) | 315 (12) |
Research question 2: What is the quality of the indicator sets?
Quality dimension → | Effective | Efficient | Accessible | Patient-centered | Equitable | Safe |
---|---|---|---|---|---|---|
Indicator sets ↓ | ||||||
1 ACSC CAN | √ | √ | √ | |||
2 ACSC UK | √ | √ | √ | |||
3 HEDIS DM | √ | √ | ||||
4 HEF | √ | √ | √ | √ | √ | |
5 MPOC-28 | √ | √ | √ | |||
6 NCI | √ | √ | √ | √ | ||
7 NHS-QIS | √ | √ | √ | √ | √ | √ |
8 POMONA | √ | √ | √ | √ | ||
9 Preventive care | √ | √ | √ | √ | ||
10 Diabetes UK | √ | √ | √ | |||
11 Six core outcomes | √ | √ | √ | √ | ||
12 QOF | √ | √ | √ | |||
13 Medication use process | √ | √ | √ | √ | √ | |
Number of sets covering dimension | 10 | 10 | 9 | 10 | 6 | 4 |