A cross-sectional study of the characteristics and determinants of emergency care utilization among people with intellectual disabilities in Taiwan

AIMS: The purpose of this study was to identify health characteristics of people with intellectual disabilities (ID) and to assess the use of emergency care facilities by these people and factors affecting this utilization. METHOD: A cross-sectional study was employed. Subjects were recruited from the Taiwan National Disability Registration System. A total of 1071 people registered with ID in Taiwan were recruited for this study in 2001. Data were collected via a structured mail-out questionnaire that was completed by the main carers of people with ID. RESULTS: Most of the carers subjectively characterized the overall health status of people with ID as good-excellent. However, people with ID carry a burden of diseases greater than that of the general population. Nearly half (47.7%) of the subjects reported having an illness in the past 7 months. Most of the morbidity was associated with neurological, psychiatric, digestive, dermatological and cardiovascular diseases or disorders. One-third of subjects took medication regularly and 15% were 'Major Illness' card beneficiaries of the Taiwan National Health Insurance scheme. About two-thirds of individuals with ID were classified as having multiple disabilities and 24.5% needed to be provided with frequent rehabilitative therapies to maintain their normal daily functions. Respondents indicated that 18.4% of the subjects had used emergency care in the past 7 months. A stepwise logistic regression model highlighted that the following need factors were significantly related to the utilization of emergency care: having an illness (OR=2.1, 95% CI=1.2-3.6), taking medicine regularly (OR=1.8, 95% CI=1.1-2.9) and self-reported health status (poor health: OR=9.9, 95% CI=2.1-45.7; bad health: OR=8.2, 95% CI=1.3-49.8). CONCLUSIONS: To ensure that people with ID minimize their utilization of emergency care, it is necessary to establish in appropriate community systems to monitor individuals with ID with poor health status, diseases and who take medicine regularly.     

Healthcare needs of people with intellectual disability in institutions in Taiwan: outpatient care utilization and implications

Background The present study assessed the outpatient care use of people with intellectual disability (ID) in order to identify patterns of healthcare needs and the factors affecting this utilization. Methods The primary method used in this study was a cross‐sectional survey of 1390 subjects with ID in Taiwan. Data were obtained from questionnaires completed at 30 registered institutions caring for people with ID. Results The findings show that people with ID in Taiwan are likely to make more outpatient visits per year than members of the general population. The prevalence of illness in people with ID was 41%, with epilepsy being the most frequently reported disease. A total of 39.5% of individuals with ID took medicine regularly, and 38.9% had used alternative forms of medication besides Western medicine. In terms of the use of outpatient facilities by people with ID, paediatric clinics were the most frequently utilized. The average monthly number of outpatient visits per person with ID was 2.18 (around 26 visits per year). This study found that the need for outpatient care is determined by a variety of factors relating to: the age of people with ID, the type of handicap, the place of medical treatment, having a family physician, the accessibility of medical care, the time‐consuming nature of the medical visits, having an illness, ID accompanied with other disabilities, and finally, a need for rehabilitative care. Conclusions From the examination of the expressed needs of people with ID, it was found that these individuals have a heightened need for healthcare and the treatment of special diseases/disorders in comparison to members of the general population in Taiwan. Within the context of ordinary services, it is particularly important to have a precise view of the ways in which the health needs of people with ID are different from the general population as a whole. This will enable healthcare services to respond to these needs, either through support systems within generic care or, in some cases, through the delivery of specific healthcare through specialized services which are kept separate from generic care.     

The prevalence of people with intellectual disability admitted to general hospital psychiatric units: level of handicap, psychiatric diagnoses and care utilization

Previous studies have stated that people with intellectual disability (ID) are more often afflicted by psychiatric disorders than the general population. In spite of the high prevalence of psychiatric disorders among people with ID, it is not known how many actually receive psychiatric in-patient care and treatment by the mental health services. In the present study, the number of people with mild and severe ID admitted to in-patient psychiatric care were compared with corresponding figures in the general population in Sweden. The results show a low frequency of psychiatric care utilization among people with ID and coexisting psychiatric disorders in comparison to the proportion of psychiatric care utilization among people with psychiatric disorders in the general population. The results are discussed in terms of how the level of ID might influence referral or diagnoses, the length of admissions, and the support provided within the special services to people with ID and psychiatric disorders.     

Longitudinal analysis of inpatient care utilization among people with intellectual disabilities: 1999–2002

Background There has been no longitudinal study in Taiwan to identify the nature and the scale of medical care utilization of people with intellectual disabilities (IDs) up to the present. The aim of this study is to describe inpatient utilization among people under ID care in institutions in order to identify the pattern of medical care needs and the factors affecting utilization in Taiwan. Method The subject cohort was 168 individuals with ID who were cared for by a large public disability institution from 1999 to 2002 in Taipei, Taiwan. Results On the examination of the inpatient care that these persons underwent, it was found that these individuals had a heightened need (inpatient rate: 10.1–14.9%) for inpatient care compared with the general population with disabilities (9.37%) in Taiwan. The main reasons for hospitalization were pneumonia, gastrointestinal disorders, cellulites, orthopaedic problems, epilepsy and bronchitis. Using the full model of Generalized Estimating Equations for inpatient care utilization, the factors including low income family, living in an institution, being a subject with cerebral palsy and being a high outpatient user all influenced the use of inpatient care. Conclusions This study highlights that health authorities need to promote health planning more in order to ensure an excellent quality of health monitoring and health promotion among people with ID cared for by institutions.     

Utilization of inpatient care and its determinants among persons with intellectual disabilities in day care centres in Taiwan

Background In Taiwan, current understanding is limited concerning the manner in which health services are utilized by persons with intellectual disabilities (ID). The objective of this study is to describe the patterns of inpatient care sought by persons with ID, and factors affecting inpatient care utilization. Method The primary method used in this study was a cross‐sectional survey of 1390 persons with ID in day care centres. Data were obtained from responses to a questionnaire, copies of which were mailed to 30 day care centres catering for persons with ID. The questionnaire assessed demographic and health characteristics, disability status, and inpatient care utilization for the 12 months leading up to the survey. Multivariate logistic regression analysis identified factors independently associated with inpatient care. Results Findings indicated that the average age of the people with ID in the centres was 13.7 years. Fifty per cent of people were afflicted with multiple handicaps, with an average of 26 outpatient visits made per person during the 12 months, and 16% of persons having been hospitalized within the previous year. The average hospital stay was 6 days. Inpatient care was more likely to be used by those individuals with an ID who were younger, had multiple handicaps, required rehabilitation, and had other disabilities and existing illnesses. Conclusions The study concluded that the parameters describing age of persons with ID, as having an existing illness, and requiring rehabilitative care were statistically significant in the logistic regression model of the inpatient care.     

Psychiatric disorders are associated with hospital care utilization in persons with hypertension

Background  Psychiatric disorders and hypertension both independently increase risk for heart disease, cardiac events, and healthcare utilization. However, the contribution of specific psychiatric disorders to healthcare utilization in persons with hypertension is unknown. Objective  To evaluate associations between psychiatric disorders and receipt of hospital care in people with hypertension. Design  Cross-sectional epidemiologic survey. Subjects  A total of 8,812 hypertensive individuals drawn from a randomly selected sample of 43,093 US adults. Main outcomes  Participants were assessed in-person for a range of mental disorders (using the Diagnostic and Statistical Manual of Mental Disorders-IV), hypertension status (self-report), and past-year occurrence of emergency room treatment and overnight hospital stay (self-report). Results  After controlling for demographics and clinical variables, persons having any lifetime mood, anxiety, or personality disorders had increased likelihood of emergency room treatment [odds ratios (ORs) = 1.26, 1.18, and 1.47, respectively]. Persons having any mood or personality disorder had increased likelihood of overnight hospital stay (ORs  = 1.24 and 1.31, respectively). The specific disorders significantly associated with emergency room treatment were lifetime major depression, lifetime manic disorder, past-year major depression, past-year manic disorder, past-year panic disorder without agoraphobia, and paranoid, histrionic, antisocial, obsessive–compulsive personality disorders, with ORs ranging from 1.25 to 2.41. The specific disorders significantly associated with overnight hospital stay were lifetime dysthymia, lifetime manic disorder, past-year major depression, past-year manic disorder, and histrionic, antisocial, and paranoid personality disorders, with ORs ranging from 1.40 to 1.87. Conclusion  Results suggest that addressing mental health problems in persons with hypertension may decrease healthcare utilization.     

Prevalence of Psychiatric Diagnoses and Challenging Behaviors in a Community-Based Population of Adults With Intellectual Disability

Previous research has suggested substantial variation in prevalence rates of psychiatric disorders in individuals with intellectual disability (ID) and also differential patterns of associations between psychiatric disorders and challenging behaviors in people with ID. The aim of this study was to determine the prevalence rate of specific psychiatric disorders and challenging behaviors and the relationship between them in a community-based sample of individuals with ID. A community-based sample of 159 adults primarily with mild and moderate ID was surveyed for the presence of psychiatric disorders and challenging behaviors using the Behavior Problem Inventory and the Psychiatric Assessment Schedule (PAS-ADD). Individuals who met threshold on the PAS-ADD were subsequently evaluated using the Mini PAS-ADD Interview. Screening for psychiatric disorders using the PAS-ADD indicated a prevalence rate of 10%. There was a large discrepancy between the overall rate of challenging behaviors (45%) and the rate of psychiatric disorders identified by the Mini PAS-ADD Interview (6%). However, the rate of more severe behavior problems (8%) was closer to the rate of psychiatric disorders (6%). Thirty-one percent of people with severe challenging behaviors also were rated as having psychiatric disorders and odd ratio analysis indicates that individuals with severe challenging behaviors are substantially more likely to present with a psychiatric disorder. However, the relationship between different topographies of challenging behaviors and discrete diagnostic categories of psychiatric disorders appears to be unclear. This study reports a low prevalence of psychiatric disorders in a community-based population. The presence of severe challenging behaviors appears to have some association with psychiatric disorders but does not appear specific to discrete diagnostic categories. Clinicians and researchers need to debate the validity of considering challenging behaviors atypical manifestations of psychiatric disorders.     

Mental health services and young people with intellectual disability: is it time to do better?

Background There is evidence that the mental health needs of children with disabilities are inadequate. The aim of the present study was to determine the extent of specialist health service use during adolescence by a group of individuals with intellectual disability (ID) and mental health problems. Method The study population consisted of 80 young people with ID, who were examined in childhood and adolescence for psychiatric and behaviour disorder. These young people were interviewed again in early adult life for the presence of psychiatric and behaviour disorder. Evaluation questionnaires were used during the follow‐up study to assess service use from adolescence. Results The key finding was that the great majority (64%) of subjects with persistent challenging behaviour from childhood into adult life and those with an established childhood psychiatric disorder received no specialist mental health care. Conclusions The development of mental health services for this vulnerable group with complex psychiatric and behaviour disorders has been poor for a number of reasons, including lack of recognition at the primary care level and insufficient numbers of trained professionals within specialist services.     

A retrospective population-based data analyses of inpatient care use and medical expenditure in people with intellectual disability co-occurring schizophrenia

The paper aims to analyze the hospital inpatient care use and medical fee of people with ID co-occurring with schizophrenia in Taiwan. A nationwide data were collected concerning hospital admission and medical expenditure of people with ID (n = 2565) among national health insurance beneficiaries in Taiwan. Multiple regression analyses were undertaken to determine the role of the explanatory variables to hospital psychiatric inpatient care and medical expenditure. We found that there were 2565 individuals with ID used hospital psychiatric inpatient care among people with ID in 2005, and 686 cases (26.7%) co-occurring with schizophrenia according to hospital discharge claims. Those ID patients co-occurring with schizophrenia consumed more annual inpatient fee than those without schizophrenia (251,346 vs. 126,666 NTD) (p < 0.001). We found factors of female cases, longer hospital stay in chronic ward and general ward users among ID patients co-occurring with schizophrenia used more hospital inpatient care (R² = 0.417). Annual hospital inpatient days were significantly affected by factors of severe illness card holder, annual inpatient care fee, longer hospital stay in acute or chronic ward (R² = 0.746). Those factors of female cases, high inpatient care users, longer hospital stay in acute ward and general ward were consuming more medical care fee than their counterparts (R² = 0.620). The study highlights the future study should examine the efficacy of hospital inpatient care for people with ID and schizophrenia.     

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

Background The aim of the present study was to assess the health status of a cohort of adults with intellectual/developmental disabilities (I/DD) residing in family homes or institutions in Taiwan and to examine whether morbidity varied with age, sex, existing diagnosis [Down syndrome (DS), seizures, cerebral palsy (CP), intellectual disability (ID) level] and residential status. Methods Systematic randomization based on geographic areas was employed for sampling selection. Primary carers were interviewed to provide health‐related information on individuals with I/DD aged 33 years or older living in institutions (n = 614) or living with their family (n = 514) in Taiwan. Results Cardiovascular, neurological, visual and hearing impairments increased with age; while gastrointestinal, endocrine, infectious and dermatological diseases did not, after adjusting for sex, level of ID, presence of DS, seizures or CP, across settings. Institution cohorts were more likely to have infectious diseases, skin diseases, hepatitis or to be hepatitis carriers, and to have psychiatric disorders. Conclusions 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.     

Psychiatric diagnoses in relation to severity of intellectual disability and challenging behaviors: a register study among older people

ABSTRACT

Objective: To investigate the possible association between severity of intellectual disability (ID) and presence of challenging behavior, respectively, on diagnoses of psychiatric disorders among older people with ID.

Methods: People with a diagnosis of ID in inpatient or specialist outpatient care in 2002–2012 were identified (n = 2147; 611 with mild ID, 285 with moderate ID, 255 with severe or profound ID, and 996 with other/unspecified ID). Moreover, using impairment of behavior as a proxy for challenging behavior, 627 people with, and 1514 without such behavior were identified.

Results: Severe/profound ID was associated with lower odds of diagnoses of psychotic, affective, and anxiety disorders than was mild/moderate ID. People with moderate ID had higher odds than those with mild ID of having diagnoses of affective disorders. Diagnoses of psychotic, affective, and anxiety disorders, and dementia were more common among people with challenging behavior than among those without.

Conclusions: People with severe/profound ID had lower odds of receiving psychiatric diagnoses than those with mild and moderate ID. Whether this is a result of differences in prevalence of disorders or diagnostic difficulties is unknown. Further, challenging behaviors were associated with diagnoses of psychiatric disorders. However, the nature of this association remains unclear.     

Healthcare costs of intellectual disability in the Netherlands: a cost-of-illness perspective

Background Healthcare costs are continuously increasing, and impose a strong responsibility on governments for an adequate allocation of resources among healthcare provisions and patients. Objectives The aims of the present study were to describe the healthcare costs of intellectual disability (ID) and other mental disorders in the context of the total costs of all other diseases, and to determinate the future need of healthcare resources, especially for ID and mental disorders. Methods The present authors performed a top‐down cost‐of‐illness study comprising all healthcare costs of the Netherlands in 1994. Data on healthcare use were obtained for all 22 healthcare sectors, and used to ascribe costs to disease groups, age and sex. Results Costs of mental disorders are by far the largest in the Dutch healthcare system. Some 25.8% of total disease‐specific costs could be ascribed to mental disorders: psychiatric conditions, 10.6%; ID, 9.0%; and dementia, 6.2%. There are large differences between age and sex groups. The costs of ID and schizophrenia are higher among men, and the costs of dementia and depression are higher among women. The age pattern shows two peaks: the first occurs at 25–35 years of age (ID and psychiatric conditions); and the second at 75–85 years of age (dementia). Time trends between 1988 and 1994 show an average annual growth rate of 5.2% for total healthcare costs: psychiatric conditions, 4.8%; ID, 5.4%; and dementia, 9.4%. Demographic projections suggest a less‐than‐average cost increase for ID and psychiatric disorders (with annual growth rates of 0.2% and 0.4%, respectively) compared to the costs of dementia and total healthcare (with annual growth rates of 1.6% and 0.9%, respectively). Conclusions Intellectual disability and mental disorders represent a large part of healthcare use in the Netherlands. The costs will inevitably increase because of the ageing of the population and increasing life expectancy among people with disabilities. Non‐specific cost containment measures may endanger the quality of care for vulnerable people at younger and older ages.     

Psychopathology in Adults with Autism and Intellectual Disability

There have been few studies of psychopathology in adult with autism. This study examined psychiatric co-morbidity in 147 adults with intellectual disability (ID) and autism and 605 adults with ID but without autism. After controlling for the effects of gender, age, psychotropic medication and level of ID, people with autism and ID were no more likely to receive a psychiatric diagnosis than people with ID only. People with autism were less likely to receive a diagnosis of personality disorder. These findings cast doubts on the hypothesis that adults with ID and autism are more vulnerable to certain psychiatric disorders than non-autistic adults with ID.     

Involvement of Youths with Autism Spectrum Disorders or Intellectual Disabilities in Multiple Public Service Systems

The objectives of this study were to estimate the prevalence of autism spectrum disorders (ASD) and intellectual disability (ID) among youths active in at least one of five public service systems: mental health (MH), educational services for youth with serious emotional disturbance (SED), child welfare (CW), juvenile justice (JJ), and alcohol and drug services (AD). This study also reports the characteristics and patterns of system involvement among these youths. Results indicate that approximately 12% of a random sample of youths involved in these public service systems had ID or ASD. These disabilities were particularly prevalent in youths in the SED (25%), MH (13%), and CW (13%) systems and were less prevalent in the JJ and AD systems (4% each). Youths with ID or ASD were more likely than other youths to be White, have a higher socioeconomic status, and be more likely to have externalizing psychiatric and other problems. Of those with ASD or ID, approximately one-third were served in more than one service system, with the MH and SED systems most likely to be serving youths with externalizing psychiatric disorders. These findings have important implications for service provision, treatment planning, and workforce development.     

The Psychopathology in Autism Checklist (PAC): A pilot study

Adults with autism and intellectual disability (ID) are assumed to have high vulnerability for developing psychiatric disorders, but instruments or criteria for identifying those who may be in need of psychiatric services have been lacking. This study presents a new carer-completed screening checklist designed for this purpose.Differentiation between symptoms related to autism and to psychiatric disorders is indicated in order to identify psychiatric disorders in persons with autism. The Psychopathology in Autism Checklist (PAC) contains 30 items representing symptoms previously evaluated as specific to one of four major psychiatric disorders (psychosis, depression, anxiety and OCD) and not related to autism. Twelve items evaluated as indicators of general adjustment problems are also included. All 42 items are based on ICD-10 and DSM-IV criteria.The PAC was piloted on a sample of 35 adults with autism and ID. The score of participants previously identified with co-occurring psychiatric disorders (i.e. psychosis, depression, anxiety disorder, or OCD) were compared with the score of participants without psychiatric disorders.The results indicate acceptable psychometric properties, and that the PAC discriminates between adults with autism and ID with and without psychiatric disorders, and partially between individuals diagnosed with different psychiatric disorders.     

Adults with Autism Spectrum Disorders using psychiatric hospitals in Ontario: Clinical profile and service needs

BackgroundAdults with Autism Spectrum Disorders (ASD) represent a small, but challenging sub-group of patients within Ontario's mental health care system. However, few studies have documented the clinical characteristics of this population and examined how such individuals differ from other psychiatric patients, with or without intellectual disabilities (ID).MethodA secondary analysis of data from the 2003 Comprehensive Assessment Projects from three psychiatric hospitals in Ontario was conducted to describe patients with ASD and ID and to determine how their profile compared to other hospital users.ResultsTwenty-three patients with ASD and ID were matched on gender and patient status (inpatient/outpatient) to individuals with and without ID. Individuals with ASD and ID were similar in terms of demographics to patients with and without ID. However, individuals with ASD and ID were younger, spent more days in hospital and were less likely to have a psychotic disorder diagnosis than both patients with and without ID. Inpatients with ASD and ID were recommended for a higher level of care than hospital service users without ID.ConclusionsClearly, this small sub-group of individuals within the hospital population has high clinical needs that are not always well met.     

A prospective case control study of psychiatric disorders in adults with epilepsy and intellectual disability

Purpose: No study to date has prospectively investigated the impact of epilepsy on psychiatric disorders among adults with an intellectual disability (ID). This study aimed to determine prospectively the influence of epilepsy on the development of psychiatric disorders in adults with ID. Method: Psychiatric symptoms were measured prospectively over a 1‐year period among 45 adults with ID and active epilepsy and 45 adults with ID without epilepsy, matched on level of ID. The 1‐year incidence rate (IR) of commonly occurring Axis 1 psychiatric disorders was compared with and without controlling for possible confounding factors. Total psychiatric symptom scores over the period were compared between the two groups using repeated‐measures analysis of covariance. Key Findings: Adults with epilepsy and ID had a more than seven times increased risk for developing psychiatric disorders, particularly depression and unspecified disorders of presumed organic origin, including dementia, over a 1‐year period compared to those with ID only. Comparison of the psychiatric scores showed the epilepsy group to have significantly higher unspecified disorder and depression symptom scores. Significance: The findings point to an increased risk of depression and unspecified disorders, including dementia, among adults with ID and epilepsy. Further exploration of the nature and treatment of these unspecified disorders may help the care of people with epilepsy and ID.     

Papanicolaou smear screening of women with intellectual disabilities: A cross-sectional survey in Taiwan

Although little is known about the incidence of cervical cancer in women with intellectual disabilities (ID), Pap smear screening is an effective public health program to prevent cervical cancer to this group of people. The purposes of this study were to identify and evaluate the factors regarding the utilization of the Pap smears in women with ID seen in the preventive health screening program. We employed a cross-sectional survey “2009 National Survey on Preventive Health Use and Determinants among People with Disabilities”, with the study sample 508 women with ID (aged ≥15 years) participated in the research in Taiwan. Results showed that there were 22.1% women with ID had ever used Pap smear screening previously and mean age of the first screening was nearly 40 years old. Comparing to the general population in Taiwan, the ID women at age group <35 years was less likely to use screening and the age group ≥35 years was more likely to use Pap smears than did the general women. Finally, a logistic regression analysis showed that marital status and had experience of accepted tubal ligation surgery were two factors which predicted Pap smear test use in the study. Those women with ID who had marital status were 8.99 times (95% CI = 1.65–49.15) more likely than those had not marital status to use Pap smear test. Women with ID had experience on tubal ligation surgery were 10.48 times (95% CI = 1.40–78.26) more likely to use Pap smear test than their counterparts. This study highlights that to acknowledge the rights of women with ID to access Pap smear screening service, health professionals will need to become more flexible and competent in the service that they provide.     

People with intellectual disability and their health problems: a review of comparative studies

Background The transition of people with intellectual disability (ID) from care institutions to the community – according to Western policy – results in a shift of responsibility towards primary health care services. In order to provide optimal care to people with ID living in the community, general practitioners need to be aware of the specific health problems of this patient category. The aim of this paper is to present an overview of recent studies on the specific health problems of people with ID, in particular on health problems of people with ID in the community, compared to those of the general population. Method To reliably compare health problems of individuals with and without ID, this review is limited to comparative research using a control group of individuals without ID. The focus of the review concentrates on international literature, published between 1995 and 2002. Results Most comparative research among people with ID presents higher prevalence rates for epilepsy, diseases of the skin, sensory loss and (increased risk of) fractures. These health problems are specific for people with ID, both in general and living in the community in particular. Conclusions there are only few studies focusing on health problems in people with ID in which a control group of individuals without ID is included. Most comparative studies on health problems in people with ID are based on comparison with reported prevalence rates of general health surveys.