Medical needs of people with intellectual disability require regular reassessment, and the provision of client- and carer-held reports
01 Feb 2003-Journal of Intellectual Disability Research (Blackwell Science Ltd)-Vol. 47, Iss: 2, pp 134-145
TL;DR: If satisfactory healthcare is to be achieved for people with ID, medical needs must be monitored, regular specialist reassessments offered, access to specialist services facilitated and reports clearly explained to carers.
Abstract: Background Previous work has indicated a wide range of unmet medical health needs in people with intellectual disability (ID).
Methods A profile of recorded medical needs was produced for 589 people with ID through a detailed search of individual medical and nursing case records. Specialist optometric and audiological assessments were offered, and reports were provided in technical and plain English terms. A Health Watch project delivered folders with copies of the plain English reports to 60 individuals and carers.
Results The case record review indicated a wide range of medical disorders; however, exact diagnoses and counselling regarding underlying neurological conditions were seldom recorded. Assessed levels of hearing and vision loss were much greater than had been previously recognized. The Health Watch reports were welcomed by the clients and carers.
Conclusions If satisfactory healthcare is to be achieved for people with ID, medical needs must be monitored, regular specialist reassessments offered, access to specialist services facilitated and reports clearly explained to carers.
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TL;DR: Recent conceptualizations that begin to disentangle health from disability are presented, the literature from 1999 to 2005 is summarized, and recommendations for future action and research are provided.
Abstract: People with ID represent approximately 2% of the population and, as a group, experience poorer health than the general population. This article presents recent conceptualizations that begin to disentangle health from disability, summarizes the literature from 1999 to 2005 in terms of the cascade of disparities, reviews intervention issues and promising practices, and provides recommendations for future action and research. The reconceptualization of health and disability examines health disparity in terms of the determinants of health (genetic, social circumstances, environment, individual behaviors, health care access) and types of health conditions (associated, comorbid, secondary). The literature is summarized in terms of a cascade of disparities experienced by people with ID, including a higher prevalence of adverse conditions, inadequate attention to care needs, inadequate focus on health promotion, and inadequate access to quality health care services. Promising practices are reviewed from the perspective of persons with ID, providers of care and services, and policies that influence systems of care. Recommendations across multiple countries and organizations are synthesized as guidelines to direct future action. They call for promoting principles of early identification, inclusion, and self-determination of people with ID; reducing the occurrence and impact of associated, comorbid, and secondary conditions; empowering caregivers and family members; promoting healthy behaviors in people with ID; and ensuring equitable access to quality health care by people with ID. Their broadscale implementations would begin to reduce the health disparity experienced by people with ID.
695 citations
01 Jan 2012
260 citations
TL;DR: In this article, the authors summarized what is known about health disparities from reports and research and provided direction on what to do to reduce these disparities among adults with intellectual disabilities, including use of data to educate decision makers, attention to social determinants and a life-course model.
Abstract: Background Recent attention to health of people with intellectual disabilities has used a health disparities framework. Building on historical context, the paper summarizes what is known about health disparities from reports and research and provide direction on what to do to reduce these disparities among adults with intellectual disabilities. Methods The present authors examined literature from 2002 to 2011 on health disparities and people with disabilities looking for broad themes on documenting disparities and on research approaches and methods. Results Multiple countries published reports on health of people with intellectual disabilities. Researchers summarized existing research within a health disparities framework. A number of promising methodologies are identified such as health services research, health indicators, enhanced surveillance and mixed-methods. Conclusions Strategies to reduce health disparities include use of data to educate decision makers, attention to social determinants and a life-course model and emphasis on leveraging inclusion in mainstream services where possible.
217 citations
Cites background from "Medical needs of people with intell..."
...For example, systematic health checks showed high rates of undetected vision or hearing loss among adults with intellectual disabilities (Kerr et al. 2003; Woodhouse et al. 2004)....
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TL;DR: 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.
Abstract: 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.
198 citations
195 citations
References
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TL;DR: Shared decision making, in which patients and health professionals join in both the process of decision making and ownership of the decision made, is attracting considerable interest as a means by which patients' preferences can be incorporated into clinical decisions.
Abstract: Editorial by Richards and Coulter
Shared decision making, in which patients and health professionals join in both the process of decision making and ownership of the decision made, is attracting considerable interest as a means by which patients' preferences can be incorporated into clinical decisions.1 When there are several treatment options which may have different effects on the patient's quality of life, there is a strong case for offering patients choice. Their active involvement in decision making may increase the effectiveness of the treatment.
Trials are currently under way to test this hypothesis formally, but there are good grounds for optimism. Patients with hypertension benefit if they are allowed to adopt an active rather than a passive role in treatment, 2 3 patients with breast cancer suffer less depression and anxiety if they are treated by doctors who adopt a participative consultation style,4 and patients who are more actively involved in discussions about the management of their diabetes achieve better blood sugar control.5 Patients whose doctors are ignorant of their values and preferences may receive treatment that is inappropriate to their needs.6–8
Patients cannot express informed preferences unless they are given sufficient and appropriate information, including detailed explanations about their condition and the likely outcomes with and without treatment. Yet many report considerable difficulties in obtaining relevant information.9 There are various reasons for this. Health professionals frequently underestimate patients' desire for and ability to cope with information. Consultation times are limited—there is often insufficient time to explain fully the condition and the treatment choices. Health professionals may themselves lack knowledge of treatment options and their effects. A solution to this problem is to ensure that patients have access to written or audiovisual material, to inform themselves and to use in discussion with health …
645 citations
TL;DR: The theories put forward to explain the association between these two disorders and their possible significance to the understanding of the aetiology of Alzheimer's disease are discussed.
Abstract: Neuropathological change found in nearly all individuals with Down's Syndrome over the age of 35 years closely resembles that of Alzheimer's disease. The extent to which dementia occurs as a result of this change is unclear, and the studies which have investigated presumed cognitive deficits are reviewed. The theories put forward to explain the association between these two disorders and their possible significance to the understanding of the aetiology of Alzheimer's disease are discussed.
313 citations
Journal Article•
TL;DR: A lack of awareness among general practitioners of the special needs of this group is thought to be in part responsible but the major factor is the inherent problem of communication which exists almost universally in people who suffer from mental handicap.
Abstract: This paper reports on the apparent inadequate level of primary medical care provided to many of the 151 mentally handicapped people who attend an adult training centre. A large number of common medical problems were identified that were not known to the general practitioners and/or were not being managed, including problems known to be associated with Down9s syndrome. Many trainees were further handicapped by unmanaged defects of hearing and vision. Contact rates with the general practitioner showed that the mentally handicapped adults did not place a greater burden on the doctor than the rest of the population. Comparing these rates with those for other vulnerable groups such as those aged over 75 years and under four years showed that only 28% of the trainees had an adequate consultation rate with the general practitioner. A lack of awareness among general practitioners of the special needs of this group is thought to be in part responsible but the major factor is the inherent problem of communication which exists almost universally in people who suffer from mental handicap. Ways of improving the situation are discussed with an emphasis on the need for a change in our attitudes towards mentally handicapped people. Reference is made to the desirability of increasing the cooperation between primary care and community mental handicap teams and the increasing importance of voluntary organizations.
156 citations
TL;DR: The prevalence of VI increased dramatically with the severity of ID and with age, and professional assessments disclosed higher prevalences of VI than questionnaires mailed to the care personnel.
Abstract: The present paper reviews studies on the prevalence of visual impairment (VI) in adults with intellectual disability (ID). Every publication describes an alarming prevalence of blindness and VI. Cataract and keratoconus were common. Many cases of poor distance vision were treatable by ordinary spherical or astigmatic glasses, but few people had had such prescriptions. Elderly residents in community and institutional care often did not receive glasses for near vision. Professional assessments disclosed higher prevalences of VI than questionnaires mailed to the care personnel. The prevalence of VI increased dramatically with the severity of ID and with age. Regular professional assessment of eye disorders, visual acuity and refraction are warranted in residents in both hospital and community care.
113 citations
TL;DR: Hearing function of an institutionalized population with intellectual disability, consisting of 70 subjects with a mean age of 70.1 (range 60-92) years at initial evaluation, was assessed during a 10-year longitudinal study.
Abstract: Hearing function of an institutionalized population with intellectual disability, consisting of 70 subjects with a mean age of 70.1 (range 60-92) years at initial evaluation, was assessed during a 10-year longitudinal study. One subject had Down's syndrome and could not be assessed as a result of dementia. The total prevalence of mild to severe hearing loss (33.3% in the 60-70 age group and 70.4% in those over age 70) was comparable to reported data from an ageing population without intellectual disability in the United Kingdom (37%, respectively 60%). However, the proportion of moderate to severe losses might be higher (16.7% vs. 7% in the 60-70 age group and 33.3% vs. 18% in the older age group). Excess impairment was caused by severe congenital and childhood hearing impairment on one hand, and by conductive losses, probably caused by unrecognized chronic middle ear infections, superposed upon presbyacusis, on the other. Impacted ear wax was also a major problem. The incidence of new cases with hearing loss during follow-up was 50%. After individual habituation training hearing aids were used without difficulties by 20 out of 24 subjects. The importance of active screening and treatment of middle ear infections and hearing impairment from a young age onwards, and regular cleaning of the external ear canals is stressed.
99 citations