Reasons for Encounters and Comorbidities in Adolescents with Intellectual Disability in General Practice: A Retrospective Analysis of Data from the Ask Study.

Adolescents with intellectual disability have substantial health needs. This retrospective analysis of data from the Ask Study describes reasons for primary care encounters and the prevalence and incidence of chronic physical and mental conditions among a cohort of community-dwelling adolescents with intellectual disability. Participants attended secondary schools in southern Queensland, Australia. Primary care data were extracted from primary care records. Demographic and health information was collected using carer-completed questionnaires. Reasons for primary care encounters, disease prevalence at age 16 years, and disease incidence through adolescence were reported. Data were obtained for 432 adolescents with intellectual disability (median follow-up: 4.1 years). Skin problems (29.4 per 100 encounters) were the most common reason patients presented for primary care, followed by psychological and behavioural problems (14.4 per 100 encounters) and musculoskeletal problems (13.8 per 100 encounters). Conditions with the highest prevalence were autism spectrum disorder (18.6%) and asthma (18.1%). The prevalence of epilepsy, visual impairment, and cerebral palsy were 14.7, 11.1, and 8.0%, respectively. Gastroesophageal reflux had the highest incidence (9.4 cases per 1000 person-years). Adolescents with intellectual disability have significant healthcare needs, which general practitioners need to be aware of and address. Study findings should inform the development of training programs for general practitioners.

Appropriateness of psychotropic medication use in a cohort of adolescents with intellectual disability in Queensland, Australia.

BACKGROUND: Psychotropic medications are sometimes used off-label and inappropriately. This may cause harm to adolescents with intellectual disability. However, few studies have analysed off-label or inappropriate prescribing to this group. AIMS: To examine the appropriateness of psychotropic prescribing to adolescents with intellectual disability living in the community in south-east Queensland, Australia. METHOD: Off-label medication use was determined based on whether the recorded medical condition treated was approved by the Australian Therapeutic Goods Administration. Clinical appropriateness of medication use was determined based on published guidelines and clinical opinion of two authors who specialise in developmental disability medicine (J.N.T. and D.H.). RESULTS: We followed 429 adolescents for a median of 4.2 years. A total of 107 participants (24.9%) were prescribed psychotropic medications on at least one occasion. Of these, 88 (82.2%) were prescribed their medication off-label or inappropriately at least once. Off-label or inappropriate use were most commonly associated with challenging behaviours. CONCLUSIONS: Off-label or inappropriate use of psychotropic medications was common, especially for the management of challenging behaviours. Clinical decision-making accounts for individual patient factors and is made based on clinical experience as well as scientific evidence, whereas label indications are developed for regulatory purposes and, although appropriate at a population level, cannot encompass the foregoing considerations. Education for clinicians and other staff caring for people with intellectual disability, and a patient-centred approach to prescribing with involvement of families should encourage appropriate prescribing. The effect of the National Disability Insurance Scheme on the appropriateness of psychotropic medication prescribing should be investigated.

Injury among adolescents with intellectual disability: A prospective cohort study.

INTRODUCTION: Injury is the leading cause of mortality and morbidity in adolescents worldwide, and injury rates have been shown to be higher among youth with intellectual disability. Despite this, injury among adolescents with intellectual disability remains poorly investigated. This study aimed to identify characteristics associated with injury among adolescents with intellectual disability living in the community. METHODS: A cohort of adolescents with intellectual disability living in southern Queensland, Australia was investigated prospectively between January 2006 and June 2010. Personal characteristics were collected via postal questionnaire. Injury information, including mechanism and location of injury, was extracted from general practitioner records. The association between demographic, social and clinical characteristics of participants and episodes of injury was investigated using negative binomial regression. RESULTS: A total of 289 injuries were recorded from 432 participants over 1627.3 years of study-time. The overall annual injury incidence was 17.5 (95%CI 14.7, 20.9) per 100 person years. Presence of ADHD and less severe disability was associated with increased risk of injury. Down syndrome and reduced verbal communication capacity were associated with decreased risk of injury. Falls accounted for the highest single mechanism of injury (19.0%) with the majority (73.2%) of injuries involving either upper or lower limbs. CONCLUSIONS: ADHD is a co-morbidity that increases risk of injury among adolescents with intellectual disability. A critical component of injury prevention is avoidance of the great variety of environmental risk factors for injury relevant to this population.

Healthy living: A health promotion program for adults with intellectual disability.

BACKGROUND: Adults with intellectual disability are more likely to experience a range of physical and mental health problems in comparison to the general population. However with access to appropriate health care and promotion, many of these health problems can be prevented. OBJECTIVE: To explore the perspectives of stakeholders of a health promotion program established for adults with intellectual disability. METHODS: Semi-structured interviews were conducted with 12 stakeholders of a health promotion program. Stakeholders included adults with intellectual disability (n = 6), their support persons (n = 4) and program presenters (n = 2). Adults with intellectual disability included three males and three females with a mean age of 45.5 years (range 37-51 years). Interviews were digitally recorded and transcribed verbatim. Transcripts were analysed using thematic analysis. RESULTS: Four main themes emerged from the data. The first theme highlights the positive feedback all stakeholders, especially adults with intellectual disability, had for the program and the second focuses on suggestions for changes to improve it. The third and final themes explore how having input from adults with intellectual disability and their support persons, who have a unique understanding of their needs, could be better incorporated into the development of the program. CONCLUSIONS: This health promotion program has been well received by people with intellectual disability when incorporated into their weekly social club meetings With encouragement and training, people with intellectual disability and their support workers could be more involved in the development of the program to ensure it is relevant to their needs.

Parent-Related Stress of Male and Female Carers of Adolescents with Intellectual Disabilities and Carers of Children within the General Population: A Cross-Sectional Comparison.

BACKGROUND: Carers of children with intellectual disability show high rates of parent-related stress and are at an increased risk for deleterious physical and mental health. MATERIALS AND METHODS: This study investigated the relationship between demographic and social characteristics and parenting stress, within two different cross-sectional samples of carers: those who care for an adolescent with an intellectual disability and carers from a population based sample. Participants were 1152 carers from the Household Income and Labour Dynamic in Australia study and 284 carers of adolescents with intellectual disabilities from the Ask study. RESULTS AND CONCLUSIONS: The results supported previous research suggesting carers of children with intellectual disabilities experience high parent-related stress. The results also support the buffer model of social support, as high social support was related to lower parent-related stress. Self-rated prosperity, financial pressure and relationship status were also related to lower levels of parent-related stress.

Drop-out during a randomized trial with adolescents with intellectual disability was associated with participant burden, while drop-out at study exit was associated with carer and household characteristics.

BACKGROUND: People with intellectual disability are difficult to retain in longitudinal studies. Research on determinants of study retention for individual-carer dyads, and their reasons for drop-out, are limited. AIMS: To investigate characteristics associated with drop-out, and to investigate whether characteristics varied by stage of drop-out. METHODS AND PROCEDURES: Data are from an Australian randomized trial with adolescents with intellectual disability living in the community. Characteristics of both the adolescent and their nominated carer were collected at baseline. Carers were sent an exit questionnaire approximately two years after enrolment. OUTCOMES AND RESULTS: Baseline information was available for 566 adolescents: 72(13.0%) withdrew during the study, and 96(17.3%) didn't return exit questionnaires. Characteristics associated with drop-out during the study were being in the intervention group, the carer being younger, and the carer not being one of the adolescent's parents. Characteristics associated with withdrawal at exit were carer having lower education and carer having lower socioeconomic status. No adolescent characteristic was associated with drop-out. CONCLUSIONS AND IMPLICATIONS: Characteristics of drop-outs weren't related to the adolescent and differed according to timing. Drop-out during the study was associated with study burden, whereas characteristics of drop-outs at exit interview were associated with lower social position.

Psychopathology of adolescents with an intellectual disability who present to general hospital services.

OBJECTIVE: Adolescents with intellectual disability have increased rates of psychopathology compared with their typically developing peers and present to hospital more frequently for ambulant conditions. The aim of this study is to describe the psychopathology and related characteristics of a sample of adolescents with intellectual disability who presented to general hospital services. METHOD: We investigated a cohort of adolescents with intellectual disability in South East Queensland, Australia between January 2006 and June 2010. Demographic and clinical data were obtained via mailed questionnaires and from general practice notes. Psychopathology was measured with the Short Form of the Developmental Behaviour Checklist. RESULTS: Of 98 individuals presenting to hospital, 71 (72.5%) had significant levels of psychopathology. Unknown aetiology for the intellectual disability was associated with presence of problem behaviours. Adolescents with more severe intellectual disability were more likely to have major problem behaviours. Co-morbid physical health issues were not associated with psychopathology. Only 12 (12.1%) adolescents had undergone specialized mental health intervention. CONCLUSIONS: The general hospital environment may offer opportunities for liaison psychiatry services to screen and provide management expertise for adolescent individuals with intellectual disability presenting for physical health issues.

Enhancing Self-Determination in Health: Results of an RCT of the Ask Project, a School-Based Intervention for Adolescents with Intellectual Disability.

BACKGROUND: Adolescents with intellectual disability have high levels of unrecognized disease and inadequate health screening/promotion which might be addressed by improving health advocacy skills. METHODS: A parallel-group cluster randomized controlled trial was conducted to investigate whether a health intervention package, consisting of classroom-based health education, a hand-held health record and a health check, increased carer-reported health advocacy in adolescents with intellectual disabilities. RESULTS: Carers of 388 adolescents responded. Adolescents allocated to receive the health intervention package were significantly more likely to go to the doctor on their own, ask questions and explain their health problems to the doctor without help. Carers reported their adolescent had benefited, gaining increased knowledge and responsibility for their own health. They themselves reported an increase in knowledge and better ability to support the young person. CONCLUSIONS: An educational initiative based on the Ask Health Diary led to improved healthcare autonomy for adolescents with intellectual disabilities.

A health advocacy intervention for adolescents with intellectual disability: a cluster randomized controlled trial.

AIM: Adolescents with intellectual disability experience poorer heath than their peers in the general population, partially due to communication barriers and knowledge gaps in their health history. This study aimed to test a health intervention package against usual care for a range of health promotion and disease detection outcomes. METHOD: A parallel-group cluster randomized controlled trial was conducted with Australian adolescents with intellectual disability living in the community. Randomization occurred at school level. The intervention package consisted of classroom-based health education, a hand-held personalized health record, and a health check. Evidence of health promotion, disease prevention, and case-finding activities were extracted from general practitioners' records for 12 months post-intervention. RESULTS: Clinical data was available for 435 of 592 (73.5%) participants from 85 schools. Adolescents allocated to receive the health intervention were more likely to have their vision (odds ratio [OR] 3.3; 95% confidence interval [CI] 1.8-6.1) and hearing (OR 2.7; 95% CI 1.0-7.3) tested, their blood pressure checked (OR 2.4; 95% CI 1.6-3.7), and weight recorded (OR 4.8; 95% CI 3.1-7.6). There was no difference between health intervention and usual care for identification of new diseases. INTERPRETATION: The school-based intervention package increased healthcare activity in adolescents with intellectual disability living in the community.

Transition to adulthood for young people with intellectual disability: the experiences of their families.

Whilst the transition from school to adult roles can be challenging for any adolescent, for those with an intellectual disability it can present as a particularly difficult time both for the individual and their family. The process may involve coordinated planning, collaboration and decision-making among school staff, families and community agencies. This mixed-methods study utilised information from two cohorts: young people with Down syndrome in Western Australia (n = 190) and young people with intellectual disability (of any cause) in Queensland, Australia (n = 150). The parent-report questionnaires administered in both states comprised two parts: part 1 collected information about the individual with intellectual disability including information on health, functioning and service needs, and about specific transition related issues; and part 2 collected information about the health and well-being of their family. The majority (87 %) of parents said that they were involved in decision-making about transition planning but less than two-thirds (59.5 %) of young people were involved in this process. The three most helpful strategies indicated by parents that assisted with transition planning related to the provision of more information about financial assistance, the school transition program and the building of informal community-based supports. A number of themes emerged from the qualitative data which included parents' views and concerns about the capacity of their young adult to adapt and change to life in adulthood, their difficulty navigating services and programs, issues and challenges around their young person building connectedness, strain on family wellbeing and finances and worry about the longer term future.

Obesity in adolescents with intellectual disability: Prevalence and associated characteristics.

OBJECTIVE: Studies from a number of countries have indicated an increased risk of obesity in adolescents with intellectual disability. Whether risk factors for adults with intellectual disability apply to adolescents however is uncertain. This study examines obesity in a community sample of adolescents with intellectual disability in Australia, and investigates risk factors associated with obesity and overweight. METHODS: A cross-sectional survey and medical record review on 261 adolescents with intellectual disability attending special education facilities in South-East Queensland, Australia between January 2006 and September 2010 was conducted. Information on age, gender, weight, height, syndrome specific diagnoses, problematic behaviours, mobility, taking psychotropic or epileptic medication, and perceived household financial difficulties was collected. Body mass index (BMI) was calculated and participants categorised as normal/underweight, overweight or obese according to the International Obesity Taskforce definitions. RESULTS: Overall 22.5% (95% CI: 17.8-28.0%) of adolescents were obese, and 23.8% (95% CI: 19.0-29.4%) were overweight, a marked increase compared to Australian norms. Adolescents with Down syndrome were more likely to be obese than other participants (odds ratio=3.21; 95% CI: 1.41-7.30). No association was found with other risk factors examined. CONCLUSIONS: Prevalence of obesity and overweight were increased compared to general Australian adolescents. The only significant risk factor was the presence of Down syndrome. These findings reinforce the need for a health policy and practice response to obesity that is inclusive of individuals with intellectual disability.

Out of sight, out of mind? The inclusion and identification of people with intellectual disability in public health research.

AIMS: Adults with intellectual disability experience substantial health inequities. Public health research aiming to improve the lives of this population group is needed. We sought to investigate the extent to which a sample of international public health research includes and identifies people with intellectual disability. METHODS: In this systematic review, we examined a select number of public health journals to determine (1) how often people with intellectual disability are explicitly included in randomised controlled trials (RCTs) and cohort studies and (2) how the presence of intellectual disability is identified and reported. RESULTS: Among eligible articles in these selected public health journals, it was found that cohort studies passively exclude people with intellectual disability, while RCTs actively exclude this population. Most general population articles that explicitly identified people with intellectual disability did so through self-report or proxy report and databases. CONCLUSIONS: A more extensive and adequate evidence base relating to the health of this overlooked population group is needed. A useful first step would be for researchers specialising in intellectual disability to identify how we can best assist mainstream researchers to include and identify people with intellectual disability in their population-level studies.

"We can talk while we're walking": seeking the views of adults with intellectual disability to inform a walking and social-support program.

To better understand how physical activity programs may contribute to improved health and social-support outcomes for people with intellectual disability, the authors conducted semistructured interviews with 11 people with intellectual disability and community-based volunteers in Brisbane, Australia. Three broad themes emerged: individual factors that generally facilitated activity, external factors that posed barriers to participation, and broader normative factors that directed participation. A key reflection arising out of the thematic analysis was that participants with intellectual disability and volunteers highlighted subtle but pervasive differences in barriers and facilitators to being active. Recommendations are provided for interventions aiming to improve physical activity and social support among those with intellectual disability. The authors' research process demonstrates the utility of seeking the views of potential participants before program rollout to inform implementation and demonstrates the usefulness of a qualitative, actively inclusive approach to health interventions.

A systematic review of interventions aiming to improve involvement in physical activity among adults with intellectual disability.

BACKGROUND: Evidence suggests that most adults with intellectual disability do not participate in sufficient amounts of physical activity (PA). A systematic review of peer-reviewed studies that reported an intervention aiming to improve PA levels of adults with intellectual disability was conducted. METHODS: Keywords related to intellectual disability and physical activity were used to search relevant databases. Studies were excluded if they did not measure PA as an outcome for adults with intellectual disability, were non-English, and were not peer-reviewed. All relevant studies were included in the review regardless of methodological quality and design. RESULTS: Six articles met the inclusion criteria. These included health education or health promotion programs with PA, nutrition, and weight loss components. The quality of studies included in this review was generally poor. Most studies used a prepost design, sample sizes were small, and measurement tools were used that are not valid and reliable for the population assessed. CONCLUSIONS: PA interventions have the potential to improve the health and wellbeing of people with intellectual disability, a vulnerable group who require attention from public health practitioners and researchers. Given the health inequities that exist, public health researchers should target efforts to improve PA levels among this group.

Psychotropic medication use in adolescents with intellectual disability living in the community.

PURPOSE: Information on the use of psychotropic medications in adolescents with intellectual disability is scant. Such information can guide interventions to improve psychotropic medication use in this population. We investigated the prevalence of, and factors associated with, psychotropic medication use in adolescents with intellectual disability in Australia who live in the community. METHODS: Cross-sectional data were obtained from adolescents with intellectual disability living in the community in South East Queensland, Australia, between February 2007 and September 2010. Self-reported information on medication use was extracted from a health screening tool. Demographic and medical data were collected through parent/caregiver surveys. Medications were classified according to the Anatomical Therapeutic Chemical classification system. Psychopathology was assessed using the Developmental Behaviour Checklist Short Form. Logistic regression analysis was used to assess the association of demographic and medical characteristics with psychotropic medication use. RESULTS: There were 176 participants (median age = 16 years, range = 11-19 years; 55% male). Psychotropics were used by 20% of participants. Psychostimulants were the commonest psychotropic class, used by 9% of participants. Multipsychotropic prescribing was not common with only seven participants using more than one psychotropic agent. After adjusting for potentially confounding variables, use of psychotropic medications was significantly associated with male gender (adjusted odds ratio = 3.6; 95% confidence interval = 1.3-9.5) and having major behaviour problems (3.1; 1.1-8.9). CONCLUSIONS: Adolescents with intellectual disability use a wide range of psychotropic medications. Being male and having major behaviour problems are associated with the use of psychotropic medications. Research examining the rationale for psychotropic prescribing in this population is needed.

Ask: a health advocacy program for adolescents with an intellectual disability: a cluster randomised controlled trial.

BACKGROUND: Adolescents with intellectual disability often have poor health and healthcare. This is partly as a consequence of poor communication and recall difficulties, and the possible loss of specialised paediatric services. METHODS/DESIGN: A cluster randomised trial was conducted with adolescents with intellectual disability to investigate a health intervention package to enhance interactions among adolescents with intellectual disability, their parents/carers, and general practitioners (GPs). The trial took place in Queensland, Australia, between February 2007 and September 2010. The intervention package was designed to improve communication with health professionals and families' organisation of health information, and to increase clinical activities beneficial to improved health outcomes. It consisted of the Comprehensive Health Assessment Program (CHAP), a one-off health check, and the Ask Health Diary, designed for on-going use. Participants were drawn from Special Education Schools and Special Education Units. The education component of the intervention was delivered as part of the school curriculum. Educators were surveyed at baseline and followed-up four months later. Carers were surveyed at baseline and after 26 months. Evidence of health promotion, disease prevention and case-finding activities were extracted from GPs clinical records. Qualitative interviews of educators occurred after completion of the educational component of the intervention and with adolescents and carers after the CHAP. DISCUSSION: Adolescents with intellectual disability have difficulty obtaining many health services and often find it difficult to become empowered to improve and protect their health. The health intervention package proposed may aid them by augmenting communication, improving documentation of health encounters, and improving access to, and quality of, GP care. Recruitment strategies to consider for future studies in this population include ensuring potential participants can identify themselves with the individuals used in promotional study material, making direct contact with their families at the start of the study, and closely monitoring the implementation of the educational intervention. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov Identifier: NCT00519311.

Dimensions of quality of life and psychosocial variables most salient to colorectal cancer patients.

Colorectal cancer is one of the most common invasive cancers, and is responsible for considerable physical and psychosocial morbidity. Understanding the quality of life experienced by colorectal cancer patients is essential for evaluating the full impact of the disease on individuals, their families and their communities. Patient perspective is essential in establishing a proper understanding of the quality of life of colorectal cancer patients. Despite this, few studies have employed a qualitative methodology to explore quality of life issues for colorectal cancer patients. A review of the literature identified only seven qualitative studies pertaining to quality of life issues for colorectal cancer patients, a surprising finding given the prevalence of this cancer. Accordingly, this study sought to build on the findings of previous qualitative research by providing descriptive data on the quality of life and psychosocial variables most salient to colorectal cancer patients. Six core themes emerged from interview and focus group data: Satisfaction with diagnosis and treatment; support (including information provision); quality of life; benefits of diagnosis; making sense of the cancer experience; and coping strategies. The information derived from this study will help inform the development of supportive care services to address the needs of the increasing number of people diagnosed with colorectal cancer.