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.

General practice encounters for young patients with autism spectrum disorder in Australia.

This study compared the patient demographics and reasons for encounter in general practice for patients <25 years with and without an autism spectrum disorder identified as a reason for encounter and/or problem managed. The Bettering the Evaluation and Care of Health programme collected information about clinical activities in Australian general practice. Each year, the programme recruited a random sample of 1000 general practitioners, each of whom collected data for 100 consecutive consultations (encounters). Encounters with patients <25 years, where at least one autism spectrum disorder was recorded as a reason for encounter and/or a problem managed (n = 579), were compared with all other encounters (n = 281,473) from April 2000 to March 2014 inclusive. Data were age-sex standardised. Patients at autism spectrum disorder encounters (compared to non-autism spectrum disorder encounters) were more likely to be younger and male. There was a dramatic rise in the number of general practitioner consultations at autism spectrum disorder encounters from 2000 to 2013. More reasons for encounter were recorded at autism spectrum disorder encounters than at non-autism spectrum disorder encounters (156.4 (95% confidence interval: 144.0-168.8) and 140.5 (95% confidence interval: 140.0-141.0), respectively). At autism spectrum disorder (vs non-autism spectrum disorder) encounters, there were more psychological, general and unspecified, and social reasons for encounter and fewer preventive and acute health reasons for encounter. People with an autism spectrum disorder have complex health care needs that require a skilled general practice workforce.

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.

High rates of general practice attendance by former prisoners: a prospective cohort study.

OBJECTIVES: To determine the rates at which people recently released from prison attend general practitioners, and to describe service users and their encounters. DESIGN, PARTICIPANTS AND SETTING: Prospective cohort study of 1190 prisoners in Queensland, interviewed up to 6 weeks before expected release from custody (August 2008 - July 2010); their responses were linked prospectively with Medicare and Pharmaceutical Benefits Scheme data for the 2 years after their release. General practice attendance was compared with that of members of the general Queensland population of the same sex and in the same age groups. MAIN OUTCOME MEASURES: Rates of general practice attendance by former prisoners during the 2 years following their release from prison. RESULTS: In the 2 years following release from custody, former prisoners attended general practice services twice as frequently (standardised rate ratio, 2.04; 95% CI, 2.00-2.07) as other Queenslanders; 87% of participants visited a GP at least once during this time. 42% of encounters resulted in a filled prescription, and 12% in diagnostic testing. Factors associated with higher rates of general practice attendance included history of risky opiate use (incidence rate ratio [IRR], 2.09; 95% CI, 1.65-2.65), having ever been diagnosed with a mental disorder (IRR, 1.32; 95% CI, 1.14-1.53), and receiving medication while in prison (IRR, 1.82; 95% CI, 1.58-2.10). CONCLUSIONS: Former prisoners visited general practice services with greater frequency than the general Queensland population. This is consistent with their complex health needs, and suggests that increasing access to primary care to improve the health of former prisoners may be insufficient, and should be accompanied by improving the quality, continuity, and cultural appropriateness of care.

Characteristics influencing attendance at a primary care health check for people with intellectual disability: An individual participant data meta-analysis.

BACKGROUND: Health checks benefit adolescents and adults with intellectual disability, however uptake is low despite government-funded incentives. AIM: To assess the characteristics of people with intellectual disability who, when offered a health check with their primary care physician at no cost, completed the health check. METHODS AND PROCEDURES: Data from three randomised controlled trials considering health checks in people with intellectual disability living in the community were included in an individual-patient data meta-analysis. The studies used the same health check and the participant characteristics investigated (age, sex, cause of disability, level of disability and socio-economic position) were defined identically, but participants were sourced from different settings: adults living in 24-h supported accommodation, adults living in private dwellings, and school-attending adolescents. OUTCOMES AND RESULTS: In total 715 participants were offered health checks. Compared to participants with Down syndrome, participants with other known causes of disability were more likely not to attend their health check (odds ratio;95%CI)=(2.5;1.4-4.7), as were participants with no known cause of disability (2.3;1.2-4.3). These associations remained significant after adjusting for potentially confounding variables. CONCLUSION AND IMPLICATION: Down syndrome was the only characteristic positively associated with health check attendance across all study settings. Future research should focus on strategies to increase health check uptake in this population.

Low-intensity case management increases contact with primary care in recently released prisoners: a single-blinded, multisite, randomised controlled trial.

BACKGROUND: The world prison population is large and growing. Poor health outcomes after release from prison are common, but few programmes to improve health outcomes for ex-prisoners have been rigorously evaluated. The aim of this study was to evaluate the impact of individualised case management on contact with health services during the first 6 months post-release. METHODS: Single-blinded, randomised, controlled trial. Baseline assessment with N=1325 adult prisoners in Queensland, Australia, within 6 weeks of expected release; follow-up interviews 1, 3 and 6 months post-release. The intervention consisted of provision of a personalised booklet ('Passport') at the time of release, plus up to four brief telephone contacts in the first 4 weeks post-release. RESULTS: Of 1179 eligible participants, 1003 (85%) completed ≥1 follow-up interview. In intention-to-treat analyses, 53% of the intervention group and 41% of the control group reported contacting a general practitioner (GP) at 1 month post-release (difference=12%, 95% CI 5% to 19%). Similar effects were observed for GP contact at 3 months (difference=9%, 95% CI 2% to 16%) and 6 months (difference=8%, 95% CI 1% to 15%), and for mental health (MH) service contact at 6 months post release (difference=8%, 95% CI 3% to 14%). CONCLUSIONS: Individualised case management in the month after release from prison increases usage of primary care and MH services in adult ex-prisoners for at least 6 months post-release. Given the poor health profile of ex-prisoners, there remains an urgent need to develop and rigorously evaluate interventions to increase health service contact in this profoundly marginalised population. TRIAL REGISTRATION NUMBER: ACTRN12608000232336.

Health actions prompted by health assessments for people with intellectual disability exceed actions recorded in general practitioners' records.

People with intellectual disability experience inadequate health care and have unmet health needs that can go unidentified or be poorly managed. Health assessments have been shown to significantly increase short-term clinical activity for people with intellectual disability. The aim of this study was to more accurately quantify the effect of health assessments for people with intellectual disability by comparing health actions recorded in health assessment booklets to actions recorded in general practitioners' (GPs) records in the 12-month period following the health assessment. Participants were people with intellectual disability who had received a Comprehensive Health Assessment Program (CHAP), living in the community. The CHAP is a health assessment that is demonstrated to significantly increase health actions, compared with usual care, for people with intellectual disability. Data collected from three randomised controlled trials conducted in South-East Queensland, Australia, from 2000 to 2010 were pooled and analysed. The health assessment booklet contained significantly more information on health actions than GPs' records. Notably, hearing tests (risk ratio (RR) = 5.9; 95% confidence interval (CI) = 4.7-7.4), breast checks (RR = 3.9; 95% CI = 2.7-5.7), and skin examinations (RR = 7.9; 95% CI = 5.9-10.7) were more likely to be recorded in the CHAP booklet. Health assessments increase health actions for people with intellectual disability to a significantly greater extent than previously demonstrated.

Incidence and correlates of hepatitis C virus infection in a large cohort of prisoners who have injected drugs.

BACKGROUND: Hepatitis C virus (HCV) infection is common among prisoners, particularly those with a history of injecting drug use (IDU). Incarcerated people who inject drugs frequently report high-risk injecting practices both in prison and in the community. In spite of rising morbidity and mortality, utilisation of HCV-related services in Australia has been persistently low. This study aimed to describe the incidence, prevalence and correlates of HCV seropositivity in a large cohort of prisoners who have injected drugs, and to identify correlates of receiving confirmation of active infection. METHODS: Data-linkage to a State-wide statutory notifiable diseases surveillance system was used to investigate the incidence of notified HCV seropositivity, seroconversion and confirmed HCV infection in a cohort of 735 prisoners with a history of IDU, over 14 years of follow up. Hepatitis C test results from prison medical records were used to identify correlates of testing positive in prison. RESULTS: The crude incidence of HCV notification was 5.1 cases per 100 person-years. By the end of follow up, 55.1% of the cohort had been the subject of a HCV-related notification, and 47.4% of those tested in prison were HCV seropositive. In multivariable analyses, injecting in prison was strongly associated with HCV seropositivity, as was opioid use compared to injection of other drugs. The rate of reported diagnostic confirmation among those with notified infections was very low, at 6.6 confirmations per 100 seropositive participants per year. CONCLUSIONS: Injecting drugs in prison was strongly associated with HCV seropositivity, highlighting the need for increased provision of services to mitigate the risk of transmission within prisons. Once identified as seropositive through screening, people with a history of IDU and incarceration may not be promptly receiving diagnostic services, which are necessary if they are to access treatment. Improving access to HCV-related services will be of particular importance in the coming years, as HCV-related morbidity and mortality is increasing, and next generation therapies are becoming more widely available.

Co-occurring mental disorder and intellectual disability in a large sample of Australian prisoners.

OBJECTIVE: Prisoners with intellectual disability who have a coexisting mental health issue often have unmet health needs and are more likely to reoffend than those with intellectual disability alone. The aims of this study were to estimate the prevalence of co-occurring mental disorder among prisoners with intellectual disability and to explore the association between intellectual disability and mental disorder. METHODS: Cross-sectional study of adult prisoners within 6 weeks of release from custody in seven prisons in Queensland, Australia between August 2008 and July 2010. Intellectual disability was assessed using a practical composite screening tool. Prisoners who scored <85 on the Hayes Ability Screening Index and reported either having attended a special school or having been diagnosed with intellectual disability were identified as having an intellectual disability. Mental health was assessed using self-reported psychiatric diagnoses, the Kessler Psychological Distress Scale (K-10), and the Mental Component Summary score of the Short-Form-36 health survey version 2. The association between intellectual disability and mental health was assessed using univariate and multivariate logistic regression. RESULTS: Overall, 1279 prisoners completed the HASI: 316 (24%) scored below the recommended cut off for further diagnostic assessment of intellectual disability, 181 (14%) reported attending a special school, and 56 (4%) reported that they had been diagnosed with an intellectual disability. On our composite measure, 115 (9%) participants were identified as having an intellectual disability. Among prisoners with intellectual disability, the estimated lifetime and current prevalence of co-occurring mental disorders was 52.5% (95% CI 43.3-61.5) and 37.2% (95% CI 28.8-46.5), respectively. Of those with intellectual disability, 13.5% (95% CI 8.3-21.1) reported very high psychological distress, as measured by the K10. Prisoners with intellectual disability were significantly more likely than their non-disabled peers to report a current diagnosis of depression [adjusted odds ratio (AOR) 1.8, 95% CI 1.1-3.2] or substance dependence (AOR 3.7, 95% CI 1.6-8.4], after adjusting for potentially confounding variables. Prisoners with intellectual disability were also significantly more likely than their non-disabled peers to use antipsychotic medication (AOR 1.7, 95% CI 1.0-2.8). CONCLUSIONS: Prisoners with an intellectual disability were more likely than their non-disabled peers to have elevated rates of psychiatric comorbidity and unmet treatment needs. There is a need for enhanced collaboration between specialist intellectual disability psychiatric services and mainstream prison mental health services, to ensure coordinated service delivery for this dually disadvantaged group.

Medication use among Australian adults with intellectual disability in primary healthcare settings: a cross-sectional study.

BACKGROUND: There is concern about widespread medication use by people with intellectual disability (ID), especially psychotropic and anticonvulsant agents. However, there is sparse information on prescribing patterns in Australia. METHOD: This cross-sectional study was conducted between 2000 and 2002 among adults with ID who live in the community in Brisbane, Australia. Medication data were extracted from a health screening tool. Demographic and medical data were collected from telephone interviews and medical records. RESULTS: Of 117 participants, 35% were prescribed psychotropic medications, most commonly antipsychotics, and 26% anticonvulsants. Complementary medications (vitamins, minerals, amino acids, fish oil, and herbal products) were used by 29% of participants. After adjusting for potentially confounding variables, psychotropic medication use was significantly associated with having a psychiatric illness (adjusted odds ratio = 4.6, 95% CI [1.0, 20.6]) and challenging behaviours (4.4, [1.1, 17.3]). CONCLUSIONS: People with ID use a broad range of medications. Psychotropic medications continue to be the most predominant agents prescribed for this population. Psychotropic medication use is positively associated with having a psychiatric illness and challenging behaviours.

Comprehensive health assessments for adults with intellectual disability living in the community - weighing up the costs and benefits.

BACKGROUND: Health assessments have beneficial effects on health outcomes for people with intellectual disability living in the community. However, the effect on medical costs is unknown. METHODS: We utilised Medicare Australia data on consultations, procedures and prescription drugs (including vaccinations) from all participants in a randomised control trial during 2002-03 that examined the effectiveness of a health assessment. Government health costs for adults with intellectual disability who did or did not receive an assessment were compared. Bootstrapping statistics (95% confidence interval) were employed to handle the right-skewed cost data. RESULTS: Over 12 months, patients receiving health assessments incurred total costs of $4523 (95% CI: $3521 to $5525) similar to those in usual care $4466 (95% CI: $3283 to $5649). Costs were not significantly higher compared with the 12 month pre-intervention period. DISCUSSION: Health assessments for adults with intellectual disability living in the community are encouraged as they produce enhanced patient care but do not increase overall consultation or medication costs.

Invisible populations: parallels between the health of people with intellectual disability and people of a refugee background.

When considering the delivery of primary health care in the community, some populations remain virtually invisible. While people with intellectual disability might seem to share few characteristics with refugees and humanitarian entrants, there are a number of difficulties that both groups share when accessing and receiving primary health care. Commonalities include communication barriers, difficulties accessing past medical records and the complexity of health needs that confront the practitioner providing health care. These issues and additional systemic barriers that prevent the delivery of optimal health care to both groups are explored. Integrated multidisciplinary care is often required for the delivery of best practice care; however, such care can be difficult for each group to access. In May 2010, the specific Medicare Health Assessment Item numbers for both of these groups were incorporated into a group of more generic Item numbers. This has resulted in a lost opportunity to enhance the evidence surrounding health care delivery to these vulnerable populations. This paper recognises the importance of health policy in leading affirmative action to ensure these populations become visible in the implementation of the National Primary Health Care Strategy.

Women with intellectual disabilities--a study of sexuality, sexual abuse and protection skills.

BACKGROUND: Sexual abuse and abusive relationships are known to be especially common in people with intellectual disability. This study explored how women with intellectual disability understand sex, relationships and sexual abuse, the effects of sexual abuse on their lives, and how successfully they protect themselves from abuse. METHODS: Semistructured narrative interviews with nine women with mild intellectual disability in Queensland, Australia. Interviews were audio recorded, transcribed, coded and analysed qualitatively. RESULTS: Major themes that emerged were: sexual knowledge and sources of knowledge; negotiating sexual relationships; declining unwanted sexual contact; self protection strategies; sexual abuse experiences; and sequelae of sexual abuse. DISCUSSION: Most participants reported unwanted or abusive sexual experiences. They described sequelae such as difficulties with sex and relationships, and anxiety and depression. They described themselves as having inadequate self protection skills and difficulty reporting abuse and obtaining appropriate support. Their understanding of sex was limited and they lacked the literacy and other skills to seek information independently. It is important for general practitioners to be aware of the possibility of sexual abuse against women with intellectual disability, and to offer appropriate interventions.

Primary health care for adults with intellectual disability.

BACKGROUND: In recent decades people with intellectual disability have moved from institutional care into the community and are now reliant on general practice services for their primary medical care. Their complex health needs present a considerable challenge to the general practitioner. OBJECTIVE: This article aims to outline the common physical and psychiatric conditions found in adults with intellectual disability, and the need for a structured approach to health care in patients with limited communication skills. DISCUSSION: Adults with intellectual disability frequently have undiagnosed health problems. In many cases these will only be identified by specific examination and testing. Health assessment tools offer a useful guide to which conditions to look out for. Early identification and treatment enhances quality of life for both people with intellectual disability and their carers.