scholarly journals Effect of deinstitutionalisation for adults with intellectual disabilities on costs: a systematic review

BMJ Open ◽  
2019 ◽  
Vol 9 (9) ◽  
pp. e025736
Author(s):  
Peter May ◽  
Richard Lombard Vance ◽  
Esther Murphy ◽  
Mary-Ann O'Donovan ◽  
Naoise Webb ◽  
...  
Keyword(s):  
Systematic Review ◽  
Cost Effectiveness ◽  
Intellectual Disabilities ◽  
Grey Literature ◽  
Cost Utility ◽  
Secondary Outcome ◽  
Medical Illness ◽  
Complex Needs ◽  
People With Intellectual Disabilities ◽  
Adults With Intellectual Disabilities

ObjectiveTo review systematically the evidence on the costs and cost-effectiveness of deinstitutionalisation for adults with intellectual disabilities.DesignSystematic review.PopulationAdults (aged 18 years and over) with intellectual disabilities.InterventionDeinstitutionalisation, that is, the move from institutional to community settings.Primary and secondary outcome measuresStudies were eligible if evaluating within any cost-consequence framework (eg, cost-effectiveness analysis, cost–utility analysis) or resource use typically considered to fall within the societal viewpoint (eg, cost to payers, service-users, families and informal care costs).SearchWe searched MEDLINE, PsycINFO, CENTRAL, CINAHL, EconLit, Embase and Scopus to September 2017 and supplemented this with grey literature searches and handsearching of the references of the eligible studies. We assessed study quality using the Critical Appraisals Skills Programme suite of tools, excluding those judged to be of poor methodological quality.ResultsTwo studies were included; both were cohort studies from the payer perspective of people leaving long-stay National Health Service hospitals in the UK between 1984 and 1992. One study found that deinstitutionalisation reduced costs, one study found an increase in costs.ConclusionA wide-ranging literature review found limited evidence on costs associated with deinstitutionalisation for people with intellectual disabilities. From two studies included in the review, the results were conflicting. Significant gaps in the evidence base were observable, particularly with respect to priority populations in contemporary policy: older people with intellectual disabilities and serious medical illness, and younger people with very complex needs and challenging behaviours.PROSPERO registration numberCRD42018077406

scholarly journals Effect of deinstitutionalisation on quality of life for adults with intellectual disabilities: a systematic review

BMJ Open ◽  
2019 ◽  
Vol 9 (4) ◽  
pp. e025735 ◽  
Author(s):  
Mary McCarron ◽  
Richard Lombard-Vance ◽  
Esther Murphy ◽  
Peter May ◽  
Naoise Webb ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Intellectual Disabilities ◽  
Grey Literature ◽  
Community Setting ◽  
Secondary Outcome ◽  
Institutional Setting ◽  
Complex Needs ◽  
Adults With Intellectual Disabilities

ObjectiveTo review systematically the evidence on how deinstitutionalisation affects quality of life (QoL) for adults with intellectual disabilities.DesignSystematic review.PopulationAdults (aged 18 years and over) with intellectual disabilities.InterventionsA move from residential to community setting.Primary and secondary outcome measuresStudies were eligible if evaluating effect on QoL or life quality, as defined by study authors.SearchWe searched MEDLINE, PsycINFO, CENTRAL, CINAHL, EconLit, Embase and Scopus to September 2017 and supplemented this with grey literature searches. We assessed study quality using the Critical Appraisal Skills Programme suite of tools, excluding those judged to be of poor methodological quality.ResultsThirteen studies were included; eight quantitative studies, two qualitative, two mixed methods studies and one case study. There was substantial agreement across quantitative and qualitative studies that a move to community living was associated with improved QoL. QoL for people with any level of intellectual disabilities who move from any type of institutional setting to any type of community setting was increased at up to 1 year postmove (standardised mean difference [SMD] 2.03; 95% CI [1.21 to 2.85], five studies, 246 participants) and beyond 1 year postmove (SMD 2.34. 95% CI [0.49 to 4.20], three studies, 160 participants), with total QoL change scores higher at 24 months comparative to 12 months, regardless of QoL measure used.ConclusionOur systematic review demonstrated a consistent pattern that moving to the community was associated with improved QoL compared with the institution. It is recommended that gaps in the evidence base, for example, with regard to growing populations of older people with intellectual disability and complex needs are addressed.PROSPERO registration numberCRD42018077406.

scholarly journals The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review

2020 ◽  
Vol 34 (8) ◽  
pp. 1006-1018
Author(s):  
Emily Adam ◽  
Katherine E Sleeman ◽  
Sarah Brearley ◽  
Katherine Hunt ◽  
Irene Tuffrey-Wijne
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Intellectual Disabilities ◽  
Social Care ◽  
Barriers And Facilitators ◽  
Cochrane Library ◽  
Care Needs ◽  
People With Intellectual Disabilities ◽  
Adults With Intellectual Disabilities ◽  
Palliative Care Needs

Background: There is evidence that people with intellectual disabilities experience healthcare inequalities, including access to specialist palliative care, but to date, there has not been a systematic review of empirical evidence. Aim: To identify the palliative care needs of adults with intellectual disabilities and the barriers and facilitators they face in accessing palliative care. Design: Systematic review using a narrative synthesis approach (International prospective register of systematic reviews (PROSPERO) registration number: CRD42019138974). Data sources: Five databases were searched in June 2019 (MEDLINE, Embase, PsycINFO, the Cochrane library and CINAHL) along with hand searches and a search of the grey literature. All study designs were included. Results: A total of 52 studies were identified, all of which were conducted in high-income countries, the majority in the United Kingdom ( n = 28). From a total of 2970 participants across all studies, only 1% were people with intellectual disabilities and 1.3% were family members; the majority (97%) were health/social care professionals. Identified needs included physical needs, psychosocial and spiritual needs, and information and communication needs. Barriers and facilitators were associated with education (e.g. staff knowledge, training and experience), communication (e.g. staff skill in assessing and addressing needs of people with communication difficulties), collaboration (e.g. importance of sustained multidisciplinary approach) and health and social care delivery (e.g. staffing levels, funding and management support). Conclusion: This review highlights the specific problems in providing equitable palliative care for adults with intellectual disabilities, but there is a lack of research into strategies to improve practice. This should be prioritised using methods that include people with intellectual disabilities and families.

scholarly journals Factors leading to effective social participation promotion interventions for people with intellectual disability: a protocol for a systematic review

2021 ◽  
Vol 10 (1) ◽  
Author(s):  
Andrés Aparicio ◽  
Paulina Arango ◽  
Rosario Espinoza ◽  
Vicente Villate ◽  
Marcela Tenorio
Keyword(s):  
Systematic Review ◽  
Intellectual Disability ◽  
Intellectual Disabilities ◽  
Social Participation ◽  
Meta Analysis ◽  
Grey Literature ◽  
Well Being ◽  
Controlled Trials ◽  
Decision Making Processes ◽  
People With Intellectual Disabilities

Abstract Background People with intellectual disabilities have been historically excluded from decision-making processes. Previous literature indicates that increasing social participation may be an effective way to address this exclusion, but no systematic review of interventions designed to increase social participation of people with intellectual disabilities have been conducted. This study aims to identify and organize the factors associated with interventions that increase the social participation of people with intellectual disabilities and to provide a set of best of practices for future interventions. Methods/design The databases Web of Science, Scopus, LILACS, and PubMed will be searched for articles from January 2004 onwards; grey literature search will be identified through searching additional databases (such as Google Scholar and EBSCO databases). Randomized controlled trials, nonrandomized controlled trials, and controlled pre–post studies will be included. Noncontrolled pre–post studies will also be included. Observational or qualitative studies will be excluded. The primary outcomes are measures of social participation. Secondary outcomes include measures of well-being, stigma, knowledge about rights, and advocacy processes. Two reviewers will independently screen articles, extract relevant data, and assess the quality of the studies. We will provide a meta-analysis of included studies if possible, or a quantitative narrative synthesis otherwise. Discussion This systematic review will add to our understanding of effective social participation interventions for people with intellectual disability. It will allow us to identify and organize which factors lead to an increase in social participation and help us define a set of best practices to be followed by future interventions. Systematic review registration PROSPERO CRD42020189093

scholarly journals Factors Leading to the Success of Social Participation Promotion Programs for People with Intellectual Disability: A Protocol for A Systematic Review

2020 ◽  
Author(s):  
Andrés Aparicio ◽  
Paulina Arango ◽  
Rosario Espinoza ◽  
Vicente Villate ◽  
Marcela Tenorio
Keyword(s):  
Systematic Review ◽  
Intellectual Disability ◽  
Intellectual Disabilities ◽  
Social Participation ◽  
Social Inclusion ◽  
Positive Impact ◽  
Meta Analysis ◽  
Grey Literature ◽  
Before And After ◽  
People With Intellectual Disabilities

Abstract Background People with intellectual disabilities have been historically excluded from decision-making processes. Previous literature indicates that social participation may be an effective tool to increase social inclusion, but no systematic review of interventions focused on social participation of people with intellectual disabilities have been conducted. This study aims to identify and organize the factors associated with social participation interventions having a positive impact on social inclusion of people with intellectual disabilities; and to provide a set of best of practices for future interventions. Methods/design This systematic review of the literature will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) recommendations. The databases Web of Science, EBSCO, Scopus, LILACS and PubMed will be searched for articles between January 1 st , 2004 and December 31 st , 2019; a grey literature search will also be conducted. Randomized control trials, nonrandomized control trials, and controlled before and after studies will be included. If necessary, noncontrolled before and after studies will also be included. Observational or qualitative studies will be excluded. The primary outcome is success of intervention. Secondary outcomes include measures of social participation. Two reviewers will independently screen articles, extract relevant data and assess the quality of the studies. Discussion This systematic review will add to our understanding of successful social participation interventions for people with intellectual disability. It will allow us to identify and organize which factors lead to an increase in social participation and help us define a set of best practices to be followed by future interventions. Systematic review registration This protocol is submitted to the PROSPERO registry of the University of York (reference number: 189093).

scholarly journals Implementation of patient-reported outcome measures and patient-reported experience measures in melanoma clinical quality registries: a systematic review

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e040751
Author(s):  
Zachary Blood ◽  
Anh Tran ◽  
Lauren Caleo ◽  
Robyn Saw ◽  
Mbathio Dieng ◽  
...  
Keyword(s):  
Systematic Review ◽  
Cost Effectiveness ◽  
Outcome Measures ◽  
Cutaneous Melanoma ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Secondary Outcome ◽  
Clinical Quality ◽  
Patient Reported ◽  
Eortc Qlq

ObjectivesTo identify patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in clinical quality registries, for people with cutaneous melanoma, to inform a new Australian Melanoma Clinical Outcomes Registry; and describe opportunities and challenges of routine PROM/PREM collection, especially in primary care.DesignSystematic review.Primary and secondary outcome measuresWhich PROMs and PREMs are used in clinical quality registries for people with cutaneous melanoma, how they are collected, frequency of collection, participant recruitment methods and funding models for each registry.Results1134 studies were identified from MEDLINE, PreMEDLINE, Embase, PsychInfo, Cochrane Database of Abstracts of Reviews of Effects databases and TUFTS Cost-Effectiveness Analysis Registry, alongside grey literature, from database inception to 5th February 2020. Following screening, 14 studies were included, identifying four relevant registries: Dutch Melanoma Registry, Adelphi Real-World Disease-Specific Programme (Melanoma), Patient-Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship Registry, and Cancer Experience Registry. These used seven PROMs: EuroQol-5 Dimensions, Functional Assessment of Cancer-General (FACT-G) and FACT-Melanoma (FACT-M), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Cancer 30 (EORTC QLQ-C30), Fatigue Assessment Scale Hospital Anxiety and Depression Scale, Patient-Reported Outcome Measures Information System-29 and one PREM; EORTC QLQ-Information Module 26. PROMs/PREMs in registries were reported to improve transparency of care; facilitate clinical auditing for quality assessment; enable cost-effectiveness analyses and create large-scale research platforms. Challenges included resource burden for data entry and potential collection bias toward younger, more affluent respondents. Feedback from patients with melanoma highlighted the relevance of PROMs/PREMs in assessing patient outcomes and patient experiences.ConclusionsClinical registries indicate PROMs/PREMs for melanoma care can be incorporated and address important gaps, however cost and collection bias may limit generalisability.PROSPERO registration numberCRD42018086737.

scholarly journals Clinical and cost evaluation of intensive support team (IST) models for adults with intellectual disabilities who display challenging behaviour: a comparative cohort study protocol

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e043358
Author(s):  
Angela Hassiotis ◽  
Athanasia Kouroupa ◽  
Rebecca Jones ◽  
Nicola Morant ◽  
Ken Courtenay ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cost Effectiveness ◽  
Intellectual Disabilities ◽  
Online Survey ◽  
Service Use ◽  
Cost Evaluation ◽  
Challenging Behaviour ◽  
Health And Social Care ◽  
Adults With Intellectual Disabilities

IntroductionApproximately 17% of adults with intellectual disabilities (ID) living in the community display behaviours that challenge. Intensive support teams (ISTs) have been recommended to provide high-quality responsive care aimed at avoiding unnecessary admissions and reducing lengthy inpatient stays in England. We have identified two models of ISTs (model 1: enhanced provision and model 2: independent provision). This study aims to investigate the clinical and cost-effectiveness of the two models of ISTs.Methods and analysisA cohort of 226 adults with ID displaying behaviour that challenges who receive support from ISTs from each model will be recruited and assessed at baseline and 9 months later to compare the clinical and cost-effectiveness between models. The primary outcome is reduction in challenging behaviour measured by the Aberrant Behaviour Checklist-Community (ABC-C). The mean difference in change in ABC score between the two IST models will be estimated from a multilevel linear regression model. Secondary outcomes include mental health status, clinical risk, quality of life, health-related quality of life, level of functioning and service use. We will undertake a cost-effectiveness analysis taking both a health and social care and wider societal perspective. Semistructured interviews will be conducted with multiple stakeholders (ie, service users, paid/family carers, IST managers/staff) to investigate the experience of IST care as well as an online survey of referrers to capture their contact with the teams.Ethics and disseminationThe study was approved by the London–Bromley Research Ethics Committee (REC reference: 18/LO/0890). Informed consent will be obtained from the person with ID, or a family/nominated consultee for those lacking capacity and from his/her caregivers. The findings of the study will be disseminated to academic audiences, professionals, experts by experience and arm’s-length bodies and policymakers via publications, seminars and digital platforms.Trial registration numberClinicalTrials.gov Registry (NCT03586375).

A practical example of an open disclosure process for people with intellectual disabilities in the Republic of Ireland

2021 ◽  
pp. 174462952110189
Author(s):  
Feabhra Mullally ◽  
Deirdre Corby
Keyword(s):  
Intellectual Disabilities ◽  
Service Providers ◽  
Republic Of Ireland ◽  
Open Disclosure ◽  
The Usa ◽  
People With Intellectual Disabilities ◽  
Adults With Intellectual Disabilities ◽  
The Republic ◽  
Communication Needs ◽  
The Uk

Literature pertaining to open disclosure predominantly refers to acute care settings; this is the case in, for example, the UK, Republic of Ireland, Australia, Korea and the USA. There is, however, a dearth of literature regarding open disclosure related to people with intellectual disabilities. A practice example of open disclosure is presented here, following a serious adverse event in an organisation supporting adults with intellectual disabilities. The aim of the process was to openly disclose in a meaningful way to adults with significant intellectual disabilities and communication difficulties. An apology pathway was developed by a multidisciplinary team based on individual communication needs. A suite of resources was developed including easy read-picture agendas and sign language to support increased understanding of the apology. Service users received the apology first, followed by meetings with their families. This practice example has positive implications for service providers for people with intellectual disabilities.

A systematic review of adverse childhood experiences (ACEs) with people with intellectual disabilities: an unsafe gap in the literature

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Chloe Crompton ◽  
Bethany Duncan ◽  
Graham Simpson-Adkins
Keyword(s):  
Systematic Review ◽  
Intellectual Disabilities ◽  
Adverse Childhood Experiences ◽  
World Health ◽  
Inclusion Criteria ◽  
Childhood Experiences ◽  
Content Type ◽  
Adverse Childhood ◽  
People With Intellectual Disabilities ◽  
The Impact

Purpose This paper aims to systematically review the available evidence that explores adverse childhood experiences (ACEs) in people with intellectual disabilities (PwID). It is important to systematically review this literature as, to date, there is little known about the number of studies in this area, despite the World Health Organization declaring ACE prevention and support as a global public health priority. Design/methodology/approach Published studies were identified from electronic database searches. Key journals and reference lists were also hand searched. Findings Two studies met the inclusion criteria and the prevalence and frequency of ACEs experienced by participants of these studies analysed. Overall, due to the small number of studies meeting the inclusion criteria, it is difficult to establish any meaningful conclusions. Originality/value This appears to be the first systematic review to try and identify a research base looking at the prevalence of ACEs within a PwID population. Findings suggest that this is a highly neglected area of research, and the authors hope to have identified that further evidence is required to draw clearer conclusions about the impact of ACEs on PwID.

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