scholarly journals Long-term condition management in adults with intellectual disability in primary care: a systematic review

BJGP Open ◽  
2018 ◽  
Vol 2 (1) ◽  
pp. bjgpopen18X101445 ◽  
Author(s):  
Peter Hanlon ◽  
Sara MacDonald ◽  
Karen Wood ◽  
Linda Allan ◽  
Sally-Ann Cooper
Keyword(s):  
Systematic Review ◽  
Primary Care ◽  
Intellectual Disability ◽  
General Population ◽  
Intellectual Disabilities ◽  
Barriers And Facilitators ◽  
Long Term Conditions ◽  
Health Checks ◽  
Adults With Intellectual Disabilities

BackgroundAdults with intellectual disabilities have higher morbidity and earlier mortality than the general population. Access to primary health care is lower, despite a higher prevalence of many long-term conditions.AimTo synthesise the evidence for the management of long-term conditions in adults with intellectual disabilities and identify barriers and facilitators to management in primary care.Design & settingMixed-methods systematic review.MethodSeven electronic databases were searched to identify both quantitative and qualitative studies concerning identification and management of long-term conditions in adults with intellectual disability in primary care. Both the screening of titles, abstracts, and full texts, and the quality assessment were carried out in duplicate. Findings were combined in a narrative synthesis.ResultsFifty-two studies were identified. Adults with intellectual disabilities are less likely than the general population to receive screening and health promotion interventions. Annual health checks may improve screening, identification of health needs, and management of long-term conditions. Health checks have been implemented in various primary care contexts, but the long-term impact on outcomes has not been investigated. Qualitative findings highlighted barriers and facilitators to primary care access, communication, and disease management. Accounts of experiences of adults with intellectual disabilities reveal a dilemma between promoting self-care and ensuring access to services, while avoiding paternalistic care.ConclusionAdults with intellectual disabilities face numerous barriers to managing long-term conditions. Reasonable adjustments, based on the experience of adults with intellectual disability, in addition to intervention such as health checks, may improve access and management, but longer-term evaluation of their effectiveness is required.

scholarly journals The role of the Quality and Outcomes Framework in the care of long-term conditions: a systematic review

2017 ◽  
Vol 67 (664) ◽  
pp. e775-e784 ◽  
Author(s):  
Lindsay JL Forbes ◽  
Catherine Marchand ◽  
Tim Doran ◽  
Stephen Peckham
Keyword(s):  
Systematic Review ◽  
Primary Care ◽  
Patient Experience ◽  
Self Care ◽  
Service Utilisation ◽  
High Quality ◽  
Long Term Conditions ◽  
Quality And Outcomes ◽  
Quality And Outcomes Framework

BackgroundImproving care for people with long-term conditions is central to NHS policy. It has been suggested that the Quality and Outcomes Framework (QOF), a primary care pay-for-performance scheme that rewards practices for delivering effective interventions in long-term conditions, does not encourage high-quality care for this group of patients.AimTo examine the evidence that the QOF has improved quality of care for patients with long-term conditions.Design and settingThis was a systematic review of research on the effectiveness of the QOF in the UK.MethodThe authors searched electronic databases for peer-reviewed empirical quantitative research studying the effect of the QOF on a broad range of processes and outcomes of care, including coordination and integration of care, holistic and personalised care, self-care, patient experience, physiological and biochemical outcomes, health service utilisation, and mortality. Because the studies were heterogeneous, a narrative synthesis was carried out.ResultsThe authors identified three systematic reviews and five primary research studies that met the inclusion criteria. The QOF was associated with a modest slowing of both the increase in emergency admissions and the increase in consultations in severe mental illness (SMI), and modest improvements in diabetes care. The nature of the evidence means that the authors cannot be sure that any of these associations is causal. No clear effect on mortality was found. The authors found no evidence that the QOF influences integration or coordination of care, holistic care, self-care, or patient experience.ConclusionThe NHS should consider more broadly what constitutes high-quality primary care for people with long-term conditions, and consider other ways of motivating primary care to deliver it.

Are Speech-Generating Devices Viable AAC Options for Adults with Intellectual Disabilities?

2010 ◽  
pp. 161-176 ◽  
Author(s):  
Dean Sutherland ◽  
Jeff Sigafoos ◽  
Ralf W. Schlosser ◽  
Mark F. O’Reilly ◽  
Giulio E. Lancioni
Keyword(s):  
Systematic Review ◽  
Intellectual Disability ◽  
Intellectual Disabilities ◽  
Intervention Studies ◽  
Evidence Based Practice ◽  
Communication Intervention ◽  
Evidence Based ◽  
Absence Of Evidence ◽  
Adults With Intellectual Disabilities ◽  
Communication Impairments

Many adults with intellectual disabilities have severe communication impairments and are therefore potential candidates for the use of speech-generating technologies. However, there may be reluctance to prescribe speech-generating devices for adults with intellectual disabilities in the absence of evidence demonstrating that such persons are capable of learning and interested in using this technology. In this chapter, the authors provide an overview of intellectual disability and the use of speech-generating technologies for adults with intellectual disability. This overview is followed by a systematic review of intervention studies that have sought to teach the use of speech-generating technologies to adults with intellectual disability. An overview and review of this type may help to inform and advance evidence-based practice in the provision of communication intervention for adults with intellectual disability.

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 Barriers and facilitators to implementation of shared medical appointments in primary care for the management of long-term conditions: a systematic review and synthesis of qualitative studies

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e046842
Author(s):  
Fiona Graham ◽  
Mei Yee Tang ◽  
Katherine Jackson ◽  
Helen Martin ◽  
Amy O'Donnell ◽  
...  
Keyword(s):  
Systematic Review ◽  
Primary Care ◽  
Best Practice ◽  
Medical Condition ◽  
Patient Characteristics ◽  
Qualitative Studies ◽  
Long Term Conditions ◽  
Shared Medical Appointments ◽  
Critical Appraisal Skills

ObjectiveTo synthesise the published literature on practitioner, patient and carer views and experiences of shared medical appointments (SMAs) for the management of long-term conditions in primary care.DesignSystematic review of qualitative primary studies.MethodsA systematic search was conducted using MEDLINE (Ovid), PsycINFO (Ovid), CINAHL (EBSCOhost), Web of Science, Social Science Premium Collection (Proquest) and Scopus (SciVerse) from database starting dates to June 2019. Practitioner, patient and carer perspectives were coded separately. Deductive coding using a framework approach was followed by thematic analysis and narrative synthesis. Quality assessment was conducted using the Critical Appraisal Skills Programme for qualitative studies.ResultsWe identified 18 unique studies that reported practitioner (n=11), patient (n=14) and/or carer perspectivs(n=3). Practitioners reported benefits of SMAs including scope for comprehensive patient-led care, peer support, less repetition and improved efficiency compared with 1:1 care. Barriers included administrative challenges and resistance from patients and colleagues, largely due to uncertainties and unclear expectations. Skilled facilitators, tailoring of SMAs to patient groups, leadership support and teamwork were reported to be important for successful delivery. Patients’ reported experiences were largely positive with the SMAs considered a supportive environment in which to share and learn about self-care, though the need for good facilitation was recognised. Reports of carer experience were limited but included improved communication between carer and patient.ConclusionThere is insufficient evidence to indicate whether views and experiences vary between staff, medical condition and/or patient characteristics. Participant experiences may be subject to reporting bias. Policies and guidance regarding best practice need to be developed with consideration given to resource requirements. Further research is needed to capture views about wider and co-occurring conditions, to hear from those without SMA experience and to understand which groups of patients and practitioners should be brought together in an SMA for best effect.PROSPERO registration numberCRD42019141893.

scholarly journals Transitioning to long-term care for older adults with intellectual disabilities: A concept analysis

2021 ◽  
pp. 174462952110418
Author(s):  
Caroline Egan ◽  
Helen Mulcahy ◽  
Corina Naughton
Keyword(s):  
Older Adults ◽  
Intellectual Disability ◽  
Intellectual Disabilities ◽  
Long Term Care ◽  
Later Life ◽  
Concept Analysis ◽  
Older Person ◽  
Term Care ◽  
Adults With Intellectual Disabilities

Aim: To undertake a concept analysis of transitioning to long-term care for older adults with intellectual disabilities. Background: Individuals with an intellectual disability are experiencing increased longevity which is associated with an increase in transitions in later life to long-term care. Their experience of later life transitions is likely to be different to the general older population. Methodology: Concept Analysis was undertaken using the Walker and Avant framework. Results: Eight studies met the inclusion criteria. Defining attributes are an older person with intellectual disability; a planned relocation to a long-term care facility; person-centred; and supported decision-making. Conclusion: There is a dearth of empirical evidence and theorisation on this concept. Transitions of this nature have been inadequately informed by the perspective of the older person with an intellectual disability, and future research and practice requires greater efforts to include their voice.

scholarly journals An evaluation of the effectiveness of annual health checks and quality of health care for adults with intellectual disability: an observational study using a primary care database

2017 ◽  
Vol 5 (25) ◽  
pp. 1-170 ◽  
Author(s):  
Iain M Carey ◽  
Fay J Hosking ◽  
Tess Harris ◽  
Stephen DeWilde ◽  
Carole Beighton ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Care ◽  
Intellectual Disability ◽  
General Population ◽  
Hospital Admissions ◽  
Health Check ◽  
Ambulatory Care Sensitive Conditions ◽  
Emergency Admissions ◽  
Health Checks

Background People with intellectual disability (ID) have poorer health than the general population; however, there is a lack of comprehensive national data describing their health-care needs and utilisation. Annual health checks for adults with ID have been incentivised through primary care since 2009, but only half of those eligible for such a health check receive one. It is unclear what impact health checks have had on important health outcomes, such as emergency hospitalisation. Objectives To evaluate whether or not annual health checks for adults with ID have reduced emergency hospitalisation, and to describe health, health care and mortality for adults with ID. Design A retrospective matched cohort study using primary care data linked to national hospital admissions and mortality data sets. Setting A total of 451 English general practices contributing data to Clinical Practice Research Datalink (CPRD). Participants A total of 21,859 adults with ID compared with 152,846 age-, gender- and practice-matched controls without ID registered during 2009–13. Interventions None. Main outcome measures Emergency hospital admissions. Other outcomes – preventable admissions for ambulatory care sensitive conditions, and mortality. Data sources CPRD, Hospital Episodes Statistics and Office for National Statistics. Results Compared with the general population, adults with ID had higher levels of recorded comorbidity and were more likely to consult in primary care. However, they were less likely to have long doctor consultations, and had lower continuity of care. They had higher mortality rates [hazard ratio (HR) 3.6, 95% confidence interval (CI) 3.3 to 3.9], with 37.0% of deaths classified as being amenable to health-care intervention (HR 5.9, 95% CI 5.1 to 6.8). They were more likely to have emergency hospital admissions [incidence rate ratio (IRR) 2.82, 95% CI 2.66 to 2.98], with 33.7% deemed preventable compared with 17.3% in controls (IRR 5.62, 95% CI 5.14 to 6.13). Health checks for adults with ID had no effect on overall emergency admissions compared with controls (IRR 0.96, 95% CI 0.87 to 1.07), although there was a relative reduction in emergency admissions for ambulatory care-sensitive conditions (IRR 0.82, 95% CI 0.69 to 0.99). Practices with high health check participation also showed a relative fall in preventable emergency admissions for their patients with ID, compared with practices with minimal participation (IRR 0.73, 95% CI 0.57 to 0.95). There were large variations in the health check-related content that was recorded on electronic records. Limitations Patients with milder ID not known to health services were not identified. We could not comment on the quality of health checks. Conclusions Compared with the general population, adults with ID have more chronic diseases and greater primary and secondary care utilisation. With more than one-third of deaths potentially amenable to health-care interventions, improvements in access to, and quality of, health care are required. In primary care, better continuity of care and longer appointment times are important examples that we identified. Although annual health checks can also improve access, not every eligible adult with ID receives one, and health check content varies by practice. Health checks had no impact on overall emergency admissions, but they appeared influential in reducing preventable emergency admissions. Future work No formal cost-effectiveness analysis of annual health checks was performed, but this could be attempted in relation to our estimates of a reduction in preventable emergency admissions. Funding The National Institute for Health Research Health Services and Delivery Research programme.

Sign in / Sign up

Export Citation Format

Share Document