A descriptive investigation of dysphagia in adults with intellectual disabilities

Chadwick, Darren; Jolliffe, Jane

doi:10.1111/j.1365-2788.2008.01115.x

Cited by 70 publications

(104 citation statements)

References 44 publications

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“…l Despite aspiration being a frequent cause of emergency admission to hospital, as well as a cause of death, among adults with ID, it was not clear that annual health checks were specifically recording any issues around eating, drinking and swallowing. We estimated that 1 in 20 adults with ID had dysphagia recorded, lower than some estimates, 164 so the recent call for dysphagia-related questions to be included in the annual health check has merit.…”

Section: Discussionmentioning

confidence: 77%

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

Carey

Hosking

Harris

et al. 2017

Health Serv Deliv Res

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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.

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Section: Discussionmentioning

confidence: 77%

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

Carey

Hosking

Harris

et al. 2017

Health Serv Deliv Res

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“…For children with cerebral palsy those with dysphagia were more likely to choke with meals, with 2 or more episodes occurring in 3 months in 12/15 (80%) of those with dysphagia but in none of the children without dysphagia [53]. In a study of adults with dysphagia where risks were reported based on clinical, videofluoroscopic and case history information, 89/99 (89.9%) were classified as at high risk of asphyxia [23].…”

Section: Choking/asphyxiationmentioning

confidence: 99%

“…were classified as at high risk of dehydration, and 57/99 (57.6%) at high risk of poor nutritional status [23]. Finally, a study of adults with mealtime support needs based on questions about GP and hospital visits found that there were nutritional concerns …”

Section: Nutritional Statusmentioning

confidence: 99%

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People with intellectual disabilities and dysphagia

Robertson

Chadwick

Baines

et al. 2017

Disability and Rehabilitation

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Purpose. Dysphagia (difficulties in eating, drinking or swallowing) is associated with serious health complications and psychosocial sequelae. This review aims to summarise the state of the evidence regarding dysphagia in people with intellectual disabilities (excluding prevalence), identify gaps in the evidence base and highlight future research priorities. Method. Studies published from 1st January 1990 to 19 th July 2016 were identified using Medline, Cinahl, PsycINFO, Web of Science, email requests, and cross-citations. Studies were reviewed narratively in relation to identified themes. Results.A total of 35 studies were included in the review. Themes identified were: health conditions associated with dysphagia; mortality; health service use; practice and knowledge in supporting people with intellectual disabilities and dysphagia; intervention effectiveness;and quality of life. Dysphagia is associated with respiratory infections and choking, and may be under-recognised. Silent aspiration is common and may go unnoticed. Management practices exist but there are few intervention studies and no RCTs, hence the effectiveness of these is currently unclear.Conclusion. Dysphagia is a key concern in relation to people with intellectual disabilities.There is urgent need for research on the management of dysphagia in people with intellectual disabilities, including mealtime support offered, positioning, dietary modification and impact on wellbeing.

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“…Two common conditions that have a higher incidence than the general population are epilepsy [5] and dysphagia [6]. Epilepsy can be defined as sudden uncontrolled episodes of excessive electrical discharges of brain cells.…”

Section: Intellectual and Developmental Disability Populationmentioning

confidence: 99%

Simulation Instruction for Direct Support Professionals: A Pilot Study between a School of Nursing and Community Providers Supporting Persons with Intellectual and Developmental Disability

Auberry¹

2016

Int J Nurs Clin Pract

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Aim: The purpose of this paper is to inform the reader about the potential relationship benefit between community-based providers supporting individuals with intellectual and developmental disability and Schools of Nursing by using simulation based learning to augment direct support staff training. This article will reveal a pilot study in a school of nursing simulation center geared toward direct support professionals in community-based agencies in South-East Indiana. Results of the study were analyzed to determine if didactic instruction coupled with simulation exercises for epilepsy and dysphagia increased the confidence level and skill mastery of DSPs to manage these conditions in the intellectual and developmental disability population. Background: As a result of a change in national and international philosophy over the last decade, persons with intellectual and developmental disability have progressed from institutional living into communitybased home settings. While this change in living arrangement offers community opportunity, it may also produce a gap in their health care. In the United States, this gap may be due in part, to the lack of uniform training requirements for direct support professionals who provide care to this population. Methods: The One-Group Pre-Test -Post-Test Design was chosen for this study. A post-confidence likert scale was also implemented. Results: Post testing results indicated a noteworthy increase in knowledge gained by direct support professionals and a significant increase in their confidence levels. Conclusion: On the basis of study results, partnerships between schools of nursing and community providers for persons with intellectual and developmental disability can be developed. Simulation Centers within schools of nursing may be used to augment current training of direct support professionals working with this population.

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A descriptive investigation of dysphagia in adults with intellectual disabilities

Cited by 70 publications

References 44 publications

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

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

People with intellectual disabilities and dysphagia

Simulation Instruction for Direct Support Professionals: A Pilot Study between a School of Nursing and Community Providers Supporting Persons with Intellectual and Developmental Disability

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