Development of a clinic for adults with Down syndrome (original) (raw)
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A Center for Adults and Adolescents with Down Syndrome: Twenty Years of Experience
2012
The Lutheran General Adult Down Syndrome Center was developed in January of 1992 in an effort to better support adults with Down syndrome. The Center was established to provide comprehensive health care using a community-oriented primary care model. Twenty years later, the multidisciplinary approach of the Center has continued to be effective in the management of a variety of patient care needs. Quality of care indicators and patient satisfaction data are provided to assess the progress of the Center.
Medical Care of Adults With Down Syndrome
JAMA, 2020
; for the Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down Syndrome Workgroup IMPORTANCE Down syndrome is the most common chromosomal condition, and average life expectancy has increased substantially, from 25 years in 1983 to 60 years in 2020. Despite the unique clinical comorbidities among adults with Down syndrome, there are no clinical guidelines for the care of these patients. OBJECTIVE To develop an evidence-based clinical practice guideline for adults with Down syndrome. EVIDENCE REVIEW The Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down Syndrome Workgroup (n = 13) developed 10 Population/Intervention/ Comparison/Outcome (PICO) questions for adults with Down syndrome addressing multiple clinical areas including mental health (2 questions), dementia, screening or treatment of diabetes, cardiovascular disease, obesity, osteoporosis, atlantoaxial instability, thyroid disease, and celiac disease. These questions guided the literature search in MEDLINE,
Medical management of children with Down syndrome
Paediatrics and child health, 2010
Down syndrome, trisomy 21, is the most common autosomal trisomy, and commonest identifiable cause of learning disability. Despite current prenatal screening practice birth prevalence continues to be around 1/ 1000 live births. Children with Down syndrome have an increased risk of congenital abnormalities and a wide range of treatable medical problems. Paediatricians have a key role in ensuring that these are recognized and treated so that the children's progress is not hampered by additional secondary but preventable disability, and so that health problems do not prevent them reaching their potential. In this article we consider the paediatrician's role with a suggested approach to medical management throughout childhood, and a review of the most frequently occurring health issues. These are cardiac, respiratory, gastrointestinal and haematological disorders, thyroid dysfunction, hearing and vision problems, cervical spine and other orthopaedic problems, immune and autistic spectrum disorders, growth and sexual development.
Health care concerns and guidelines for adults with Down syndrome
American journal of medical genetics, 1999
Down syndrome (DS) is the most common cause of mental retardation in North America, yet little information is available on the natural history of DS in adults. We report on significant medical problems of adults with DS (DS adults) residing in a British Columbia provincial residential center, Woodlands, over the 12-year period from 1981 through 1992. Prospective, yearly health care reviews on 38 DS adults are summarized according to age. Group 1 consists of 18 middle-aged DS adults less than 50 years old, and group 2 comprises 20 elderly DS adults 50 years and older. Significant health problems in all DS adults include untreated congenital heart anomalies (15.8%), acquired cardiac disease (15.8%), pulmonary hypertension (7.8%), recurrent respiratory infections/aspiration leading to chronic pulmonary interstitial changes (30%), complications from presenile dementia/Alzheimer-type disease (42%), adult-onset epilepsy (36.8%), osteoarthritic degeneration of the spine (31.6%), osteoporosis with resultant fractures of the long bones (55%) or vertebral bodies (30%), and untreated atlantooccipital instability (7.9%). Acquired sensory deficits are significant problems including loss of vision due to early onset of adult cataracts (50%), recurrent keratitis (21%) or keratoconus (15.8%), and significant hearing loss (25%). Behavioral problems (50%), loss of cognitive abilities, and onset of symptoms of Alzheimer disease (group 1: 5.5%; group 2: 75%) pose ongoing challenges for care. In conclusion, the quality of life for adults with DS can be improved by routine, systematic health care screening to identify treatable diseases that may be missed because of poor communication or confusion due to Alzheimer disease. Am. J. Med. Gent.
Journal of Intellectual and Developmental Disability, 2011
Background Medical problems are described in a population of persons with Down syndrome. Health surveillance is compared to the recommendations of national guidelines. Method Case records from the specialised and primary healthcare and disability services were analysed. Results A wide spectrum of age-specific medical and surgical problems was described. Congenital heart defects and middle ear infections were mostly experienced by younger people, while thyroid disease, epilepsy, and Alzheimer's disease were frequent among older people. Psychiatric disorders and behavioural problems were frequent in all age groups. Conclusions Health surveillance remained insufficient, despite the guidelines available. A joint effort by healthcare and disability service providers is required to ensure that the medical needs of people with Down syndrome are adequately met across their entire lifespan. An active provision of healthcare and monitoring for this vulnerable group is needed. J Intellect Dev Dis Downloaded from informahealthcare.com by 213.143.167.8 on 11/11/11 For personal use only. J Intellect Dev Dis Downloaded from informahealthcare.com by 213.143.167.8 on 11/11/11
Managing the care of adults with Down's syndrome
BMJ, 2014
How long do people with Down's syndrome live? The survival of people with Down's syndrome has dramatically increased in the past few decades, largely as a result of improved surgical repair of congenital heart defects. 1 4 6-8 Until the 1970s, the median age at death for children with Down's syndrome was less than 10 years. 1 4 5 Now, 80% of affected individuals survive into adolescence, 15 with a median age at death in their mid-50s. 6-10 The leading causes of death in adults with Down's syndrome are diseases of the respiratory and circulatory systems. The percentage of adults who die of cardiac causes (including consequences of congenital heart disease) is 25-40%, with an additional 20-40% of deaths resulting from respiratory infections. 8 9 16 17 The development of dementia becomes considerable after age 40, contributing to nearly one third of deaths. 8 Aside from childhood leukemia, the incidence of neoplasms-hematologic or solid tumor-is low in all age groups with Down's syndrome. 8 17 The risk of cardiac a therosclerosis remains lower than in the general population without Down's syndrome but increases to 13% in adults aged 50 or older. 8 What are the most common comorbid conditions in Down's syndrome? The table details our recommendations for evaluation of comorbid conditions and their frequency. Endocrinology Hypothyroidism is present in 15-37% of people of all ages with Down's syndrome. 18 26 44 64 It presents with symptoms such as fatigue, weight gain, decreased interest in activities, or a decline in skills. 2 27 81 Hyperthyroidism is slightly more common in people with Down's syndrome (0.65%) than in the general population, presenting with weight loss, heat intolerance, and irritability. 65 Currently accepted guidelines advocate annual thyroid function tests. 2 35
Down syndrome in adults: success and challenge
Geriatrics, Gerontology and Aging
A estimativa da sobrevida média de indivíduos com síndrome de Down (SD) passa atualmente dos 50 anos de idade. Esse dado demográfico justifica a atenção de profissionais da saúde que prestarão cuidados a um número crescente de adultos com SD. A avaliação clínica desse grupo de pacientes adultos deve correlacionar características inerentes à faixa etária, principalmente as peculiaridades produzidas pela síndrome. O presente artigo propõe o desenvolvimento de programas de prevenção e vacinação-conforme gênero e idade-e triagem de doenças e quadros associados à síndrome: 1) doenças endócrinas; 2) doenças cardíacas; 3) saúde mental; 4) saúde bucal; 5) órgãos sensoriais; 6) anomalias osteoarticulares; 7) pele e anexos; 8) doenças gastrointestinais; 9) câncer. Entretanto, há poucas informações sobre o impacto das comorbidades na expectativa de vida e na qualidade de vida, além dos custos hospitalares e sociais de adultos com SD.
Adults with Down's syndrome: the prevalence of complications and health care in the community
The British journal of general practice : the journal of the Royal College of General Practitioners, 2007
Individuals with Down's syndrome are predisposed to a variety of medical conditions which can impose an additional, but preventable, burden of secondary disability. Although there are guidelines for health checks and medical management of children with Down's syndrome, the needs of adults are relatively neglected. To determine the prevalence of common medical problems in adults with Down's syndrome, and to assess current practice regarding medical surveillance of these patients. Detailed notes analysis. Data were obtained from the primary care records of adults with Down's syndrome living in the Newcastle upon Tyne and Gateshead areas. Case notes were reviewed to obtain details regarding complications and to determine the frequency of medical surveillance of individuals with Down's syndrome. Complications such as hypothyroidism, celiac disease, and obesity occur more frequently in adults with Down's syndrome than previous paediatric prevalence studies suggest...