Carer reports of health status among adults with intellectual/developmental disabilities in Taiwan living at home and in institutions

Wang, Kuo Yu; Hsieh, Kelly; Heller, Tamar; Davidson, Philip W.; Janicki, Matthew P.

doi:10.1111/j.1365-2788.2006.00819.x

Cited by 26 publications

(18 citation statements)

References 22 publications

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“…Primarily, the included studies were cross-sectional observational (n = 31 81,82,98,[100][101][102]104,106,[109][110][111]114,116,119,121,124,[126][127][128][129][130][131][132][133][134][135]137,139,142,143,145 ). The remaining studies involved retrospective database or medical records data (n = 22 [83][84][85][86][87][88][89]94,95,99,107,113,115,117,118,120,122,123,136,…”

Section: Study Characteristicsmentioning

confidence: 99%

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

Dunkley

Tyrer

Spong

et al. 2017

Programme Grants Appl Res

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BackgroundThe prevalence of type 2 diabetes mellitus (T2DM) and of cardiovascular disease (CVD) is believed to be higher among people with intellectual disability (ID) than in the general population. However, research on prevalence and prevention in this population is limited.ObjectivesThe objectives of this programme of work were to establish a programme of research that would significantly enhance the knowledge and understanding of impaired glucose regulation (IGR) and T2DM in people with ID; to test strategies for the early identification of IGR and T2DM in people with ID; and to develop a lifestyle education programme and educator training protocol to promote behaviour change in a population with ID and IGR (or at a high risk of T2DM/CVD).SettingLeicestershire, UK.ParticipantsAdults with ID were recruited from community settings, including residential homes and family homes. Adults with mild to moderate ID who had an elevated body mass index (BMI) of ≥ 25 kg/m2and/or IGR were invited to take part in the education programme.Main outcome measuresThe primary outcome of the screening programme was the prevalence of screen-detected T2DM and IGR. The uptake, feasibility and acceptability of the intervention were assessed.Data sourcesParticipants were recruited from general practices, specialist ID services and clinics, and through direct contact.ResultsA total of 930 people with ID were recruited to the screening programme: 58% were male, 80% were white and 68% were overweight or obese. The mean age of participants was 43.3 years (standard deviation 14.2 years). Bloods were obtained for 675 participants (73%). The prevalence of previously undiagnosed T2DM was 1.3% [95% confidence interval (CI) 0.5% to 2%] and of IGR was 5% (95% CI 4% to 7%). Abnormal IGR was more common in those of non-white ethnicity; those with a first-degree family history of diabetes; those with increasing weight, waist circumference, BMI, diastolic blood pressure or triglycerides; and those with lower high-density lipoprotein cholesterol. We developed a lifestyle educational programme for people with ID, informed by findings from qualitative stakeholder interviews (health-care professionals,n = 14; people with ID,n = 7) and evidence reviews. Subsequently, 11 people with ID (and carers) participated in pilot education sessions (two groups) and five people attended education for the feasibility stage (one group). We found that it was feasible to collect primary outcome measures on physical activity and sedentary behaviour using wrist-worn accelerometers. We found that the programme was relatively costly, meaning that large changes in activity or diet (or a reduction in programme costs) would be necessary for the programme to be cost-effective. We also developed a quality development process for assessing intervention fidelity.LimitationsWe were able to screen only around 30% of the population and involved only a small number in the piloting and feasibility work.ConclusionsThe results from this programme of work have significantly enhanced the existing knowledge and understanding of T2DM and IGR in people with ID. We have developed a lifestyle education programme and educator training protocol to promote behaviour change in this population.Future workFurther work is needed to evaluate the STOP Diabetes intervention to identify cost-effective strategies for its implementation.Trial registrationClinicalTrials.gov NCT02513277.FundingThe National Institute for Health Research Programme Grants for Applied Research programme and will be published in full inHealth Research Programme Grants for Applied Research; Vol. 5, No. 11. See the NIHR Journals Library website for further project information.

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Section: Study Characteristicsmentioning

confidence: 99%

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

Dunkley

Tyrer

Spong

et al. 2017

Programme Grants Appl Res

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“…(2002) found an increased frequency of musculoskeletal conditions with increasing age, mostly related to osteoarthritis and osteoporosis. Similar results were reported in Israel (Merrick et al., 2004) and in Taiwan (Wang et al., 2007), both in institutional and community settings. Strauss et al.…”

Section: Introductionmentioning

confidence: 99%

“…As those figures are not age‐specific comparisons, the reported overall increase in CVD prevalence and the elevated mortality risk for adults with ID may be due to the fact that adults with ID have a longer life expectancy than decades ago. With aging, there are increases in the frequency of CVD in persons with ID—as shown in the U.S. (Cooper, 1998; Janicki et al., 2002), Israel (Merrick et al., 2004), Taiwan (Wang, Hsieh, Davidson, & Janicki, 2007), and the Netherlands (van den Akker, Maaskant, & van der Meijden, 2006). However, risk factors for CVD, such as hypertension, hyperlipidemia, and adult‐onset diabetes showed lower rates when compared with the general population in the U.S. (Janicki et al., 2002) and Israeli studies (Merrick et al., 2004).…”

mentioning

confidence: 99%

Major Health Risks in Aging Persons With Intellectual Disabilities: An Overview of Recent Studies

Haveman

Heller

Lee

et al. 2010

Policy Practice Intel Disabi

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174

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The authors examined the health‐related literature on aging and intellectual disabilities (ID) published since 1999, with specific focus on examining findings on age‐associated health risk factors, such as cardiovascular, gastrointestinal, and musculoskeletal system health issues, and age‐related oral health. They also examined studies of lifestyle health risks, primarily the contributions to overweight or obesity. Although the review revealed varying differences in the prevalence of health risk factors, significant evidence is emerging that cardiovascular disease is as prevalent among people with ID and is as common a cause of death as in the general population. However, the review showed that the variations in prevalence were culturally dependent. Digestive system problems were evident with high occurrence rates of helicobacter pylori, gastroesophageal reflux disease, and constipation. The review revealed a growing body of work on health risk factors, such as overweight and obesity, which are often linked to the onset of a variety of diseases and impairing conditions. Healthier lifestyles, better nutrition and more exercise, and greater surveillance of health risks were seen as ways to improve the health status of aging adults with ID.

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“…A question modified from the New York State Developmental Disabilities Profile II (Brown et al., 1987) was also included to track behavioral disorders. The instrument was then used by nurses to collect data on over 4,500 adults age 40 years and older in three different research studies (Janicki et al., 2002; Merrick et al., 2004; Wang et al., 2007).…”

Section: Methodsmentioning

confidence: 99%

“…The instrument was used in several large‐scale population research studies (cf. Janicki et al., 2002; Merrick et al., 2004; Wang et al., 2007), but was never checked for clinical reliability. Moreover, it queried point prevalence of diseases but did not identify either lifetime prevalence or incidence.…”

mentioning

confidence: 99%

Ascertaining Health‐Related Information on Adults With Intellectual Disabilities: Development and Field Testing of the Rochester Health Status Survey

Davidson

Henderson

Janicki

et al. 2008

Policy Practice Intel Disabi

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There is a growing need for researchers and service providers to ascertain and track health status and health care utilization among adults with intellectual disabilities as they pass through the lifespan. This paper reports the development and field testing of the Rochester Health Status Survey (RHSS), a survey instrument that identifies incidence, lifetime prevalence, and point prevalence of diseases common in adults, as well as functional abilities and medication usage. The instrument also provides information about health system access and utilization. The survey is designed to be completed from chart review. An initial version of the survey was developed in 1998, revised in 2003, and then validated on a cohort of adults ages 21 to 73 years living in supervised community residences in the U.S. The RHSS includes 51 questions and requires about 45 min to complete. In the present study, data were collected on each subject by 3 different respondents (a service coordinator, a nurse, and when available, a family member). Their responses were compared item by item with the responses of the second author, a developmental disabilities geriatrician, who also completed the survey on each subject. Correlations and Kappa statistics confirmed that the highest agreement scores occurred between nurses and the geriatrician.

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Carer reports of health status among adults with intellectual/developmental disabilities in Taiwan living at home and in institutions

Abstract: Organ system morbidity increased with age and generally was influenced by the same factors as have been reported for cohorts in western countries. The results also suggest that disease/condition outcomes may vary or be influenced differentially by residential setting.

Cited by 26 publications

References 22 publications

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

Major Health Risks in Aging Persons With Intellectual Disabilities: An Overview of Recent Studies

Ascertaining Health‐Related Information on Adults With Intellectual Disabilities: Development and Field Testing of the Rochester Health Status Survey

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