Outcomes in young adulthood: are we achieving community participation and inclusion?

BACKGROUND: Despite recognition of the importance of integrated community living and support, there is evidence that parents remain the primary caregivers of young adults with intellectual disability (ID). In addition, employment rates remain low in this population. This study aimed to investigate the changes in living arrangements and participation in daytime activities over time in a community population of young people with ID. METHOD: The sample consisted of 536 participants aged 4.0-18.9 years at Wave 1, followed up at Wave 5 when aged 20.5-37.6 years. Information was collected on their living arrangements and daytime activities at both time points, along with living skills and information on community social inclusion at Wave 5. For parents still caring for their adult child with ID, information was also collected on parental ratings of their own mental and physical health, and their satisfaction with the long-term care arrangements for their adult child. RESULTS: A significant proportion of young people were still living with their parents at Wave 5. A greater proportion of those with a severe-profound degree of ID were living in residential care. Parents caring for their adult child reported high levels of mental health problems and dissatisfaction with the long-term care arrangements for their child. A small proportion of young people were in paid employment, and the majority was engaged in structured activities provided for those with an ID. Over one-third of the sample participated in a structured daytime activity for 10 or fewer hours per week, and 7% were not engaged in any structured daytime activity. CONCLUSIONS: These results suggest that adequate provision of accommodation and employment services for young adults with an ID is lacking. In many cases the responsibility of care continues to reside with parents as their children transition from childhood to adulthood. Greater attention is needed to address these issues and facilitate social inclusion and integration for young people with ID.

Behavioural and emotional problems in people with severe and profound intellectual disability.

BACKGROUND: People with severe and profound levels of intellectual disability (ID) are frequently examined as a single group in research. However, these two groups may be significantly different, particularly in the area of emotional and behavioural difficulties. METHOD: The Developmental Behaviour Checklist (DBC) was completed by parents and caregivers of 107 people with severe ID and 22 people with profound ID at four time periods across 12 years. Regression analyses were used to examine trends in sub-scale scores across time and groups. RESULTS: Significant differences between the groups of people with severe and profound ID were found. People with profound ID had significantly lower scores across all sub-scales except Social Relating. This was usually related to fewer items being selected as present for people with profound ID, as opposed to the scores being attributable to lower item severity scores. CONCLUSIONS: There are significant differences between groups of people with severe and profound ID in scores on the DBC, indicating differences in behavioural and emotional problems. Caution should be exercised by researchers treating these two disparate groups as a single group, and by practitioners translating such findings into practice.

Inter-rater reliability of the Developmental Behaviour Checklist for Adults in community accommodation settings.

BACKGROUND: With the publication of the Developmental Behaviour Checklist for Adults (DBC-A), people of all ages with intellectual disability (ID) can now be assessed using a carer-completed screening checklist of emotional and behavioural disturbance. This provides a broad assessment framework across the life span, assists the process of clinical assessment, diagnosis and management, and, through efficient screening, helps ensure that people with ID and high levels of disturbed behaviour are more likely to receive the often scarce and costly behavioural and mental health services that are available. Earlier studies have reported acceptable results of test-retest reliability studies with family members and paid carers in community settings and the results of an inter-rater reliability study completed with family members. This study reports on another aspect of DBC-A reliability, inter-rater reliability with paid carers, in two small community-based accommodation settings. METHOD: Participants were 38 pairs of paid carers employed by two non-government agencies providing residential services in small group homes to 38 adults with ID in the community. RESULTS: An intraclass correlation coefficient (ICC) of 0.69 (n = 38, 95% CI 0.54-0.86) was found between pairs of paid carers employed in small group homes. DISCUSSION: Pairs of paid carers working with adults with ID in small group homes reliably completed DBC-A checklists. An ICC result of 0.69 compares favourably with the results of an earlier inter-rater study completed with the family members of people with ID living in the community. Inter-rater reliability on the six DBC-A sub-scales was also computed and the results were satisfactory. CONCLUSIONS: The carer-completed DBC-A provides a broad and comprehensive survey of the emotional and behavioural problems of adults with ID. It has satisfactory psychometric properties, which have been further extended. The DBC-A can be used in clinical, research and service settings to assess psychopathology across the adult life span in people with ID.

Habitual physical activity is a meaningful predictor of well-being in mid-life women: a longitudinal analysis.

OBJECTIVES: To examine whether physical-activity patterns over a period of 4 years are associated with well-being. DESIGN: A sample of 399 women aged 50-60 years participated in the study. Measures included rate of physical activity and other life style behaviors, well-being, health status, and interpersonal stress. Sufficient and insufficient exercisers were identified, and the association of this dichotomy with well-being, along with the contribution of the other variables, was examined. RESULTS: The distribution of physical-activity patterns remained stable over the 4 years of the study, with 40% of the women exercising leisurely and 15-20% exercising vigorously four to seven times a week. Approximately 50% of the women were considered sufficiently active in terms of public recommendations. Random effects regression analysis revealed that sufficient exercise along with a low frequency of daily hassles, relatively few menopausal symptoms, and a low level of interpersonal stress significantly contributed to the variability of well-being. CONCLUSIONS: These data evoke the need for a better understanding of exercise behavior and its promising potential contribution to the well-being of middle-aged women.

Inter-Rater Reliability of the Diagnoses of Psychosis and Depression in Individuals with Intellectual Disabilities.

BACKGROUND: There is a history of over-prescription of antipsychotics to individuals with intellectual disability (ID), while antidepressants may be under-prescribed. However, appropriate treatment is best supported when the diagnosis of psychosis or depression is valid and carries good predictive validity. The present authors report a study examining one aspect of validity, namely whether skilled clinicians can agree on whether an individual with an ID is psychotic or depressed. MATERIALS AND METHODS: Pairs of clinicians assessed 52 individuals. Agreement was assessed using Cohen's kappa statistic and agreement proportion. RESULTS: Overall agreement was high for both psychosis and depression. Whether the individual had mild ID or moderate/severe ID did not have a significant impact on agreement. CONCLUSIONS: Experienced clinicians achieved a high level of agreement as to whether a person with ID was psychotic or depressed similar to that found for those without ID. The findings provide some support for treatment interventions based on diagnosis.

A clinical trial of the effects of estrogen in acutely psychotic women.

This study was a preliminary open clinical trial aimed at exploring the hypothesis that estrogen may provide protection against schizophrenia in women. Eleven women with acute psychotic symptoms, as scored on the BPRS, SAPS and SANS, had 0.02 mg estradiol added to neuroleptic treatment for eight weeks. Their response was compared to seven women with similar symptom severity receiving neuroleptic treatment alone. Both groups had baseline hormonal assays of estrogen, progesterone, LH and FSH and underwent regular psychopathology ratings during the eight weeks. The group receiving the estradiol adjunct showed more rapid improvement in psychotic symptoms compared with the group receiving neuroleptics only. This difference was not sustained for the entirety of the trial. Both groups reached similar levels of recovery by the eighth week. These results suggest that estradiol may have antipsychotic properties and/or act as a catalyst for neuroleptic responsiveness in women with schizophrenia.

Estrogen - a potential treatment for schizophrenia.

Estrogen has been shown in animal studies to modulate both the dopamine and serotonin neurotransmitter systems - the main neurotransmitters implicated in the pathogenesis of schizophrenia. A double blind, 28 day, placebo-controlled study was conducted with three groups of women of child-bearing age (N=12 in each group) who received standardized antipsychotic medication plus 50mcg transdermal estradiol or 100mcg transdermal estradiol or transdermal placebo. Analyses show that women receiving 100mcg of estradiol made greater improvements in the symptoms of schizophrenia than both the 50mcg estradiol and placebo groups. Women receiving 50mcg estradiol had more improvement in their symptoms compared with the placebo group. The 100mcg estradiol group had significantly lower mean lutenizing hormone (LH) and higher mean prolactin levels across the study period compared with both the 50mcg and placebo groups. The addition of 100mcg adjunctive transdermal estrogen significantly enhanced the treatment of acute, severe psychotic symptoms in women with schizophrenia. The differential response of adding 50mcg versus 100mcg estradiol on the types of symptom affected may be related to the estrogen effect on LH and prolactin. The positive impact of estrogen treatment on psychotic symptoms by a direct effect on dopamine and serotonin systems or via an indirect prolactin-mediated effect may be very useful in the overall treatment of women with schizophrenia.

Determinants of self rated menopause status.

This study, based on a population survey, examines the self ratings of progress through the menopausal transition of women in natural menopause, women using hormone therapy and women who have undergone hysterectomy. The latter two groups are usually excluded from discussions of menopausal transition, since the accepted menstrually defined criteria do not apply to them. Hysterectomised women do not differ in their self rating profile from non-hysterectomised women, after hormone therapy status is taken into account. This is surprising, since they may have been expected to see themselves as in the main postmenopausal. Use of hormone therapy is tantamount to self perception as at least perimenopausal. Among women in natural menopause there is 29% disagreement between self ratings and menstrually defined categories. On the basis of these observations it is hypothesised that experience of symptoms associated with menopause is important in determining self ratings. The good fit of logistic regression predictions of self ratings from hysterectomy status, hormone therapy status and experience of hot flushes is consistent with this hypothesis. This research indicates that it is important to take women's subjective evaluations into account in assessing progress through the menopausal transition.

Physician diagnosed arthritis, reported arthritis and radiological non-axial osteoarthritis.

OBJECTIVE: To determine the question that best predicts radiographic evidence of non-axial osteoarthritis (OA). DESIGN: The Melbourne Women's Mid-life Health Project (MWMHP), commenced in 1991, is a population-based prospective study of 438 Australian-born. Two hundred and fifty-seven (57%) women remained in longitudinal assessment in 2002 and 224 (87%) women agreed to undergo X-rays of their hands and knees between 2002 and 2003. METHODS: Annually participants were asked about aches and stiff joints and arthritis or rheumatism. In the eleventh year of follow-up X-rays were scored for evidence of OA using a validated scale, by two investigators who were blinded to questionnaire results. Information on hormone therapy use, physical activity, mood, smoking, body mass index (BMI) and age were obtained by both self-administered and face-to-face questionnaires. RESULTS: Patient reported physician diagnosed arthritis was the best predictor of radiological OA (ROA). The question had a specificity of 64%, a positive predictive value of 57% and a negative predictive value of 71%. Even the most reliable question about arthritis still had a relatively low specificity for radiologically diagnosed OA. Reporting symptoms were significantly more common in participants who were depressed, those who had a higher negative affect and those with a higher BMI. CONCLUSION: In large epidemiological studies where questionnaire assessment of OA is required, the greatest accuracy is achieved by asking about physician diagnosed arthritis. Concurrent application of a validated scale for mood is important.

Behaviour and emotional problems in toddlers with pervasive developmental disorders and developmental delay: associations with parental mental health and family functioning.

BACKGROUND: Behavioural and emotional problems occur at a high rate in children and adolescents with intellectual disability, often from a young age. Some studies have indicated that children and adolescents with autism present with even higher rates. Less is known about the presentation, development and family impact of these difficulties in young children with autism. This study aimed to explore these issues in toddlers with pervasive developmental disorders (PDDs), those with delay without a PDD, and their families. METHODS: Participants were 123 children aged 20-51 months, referred to a developmental assessment clinic. Parents completed a checklist on child behavioural and emotional problems, and individual questionnaires on family functioning, their own mental health, and stress in relation to parenting their child. The child's language and cognitive skills, adaptive functioning and behaviour were assessed by standardized measures. Measures were repeated 1 year postdiagnosis. Behavioural and emotional problems in young children with a PDD were compared with those in children with developmental delay without a PDD, and their impact on parental outcomes explored over time. RESULTS: Initial and follow-up measures of child behaviour and emotional problems, parent mental health problems, parent stress and family functioning were significantly correlated, providing some evidence of stability over time. Child emotional and behavioural problems contributed significantly more to mother stress, parent mental health problems, and perceived family dysfunction than child diagnosis (PDD/non-PDD), delay or gender. Compared with mothers, all fathers reported significantly less stress in relation to parenting their child. CONCLUSION: Results highlighted the importance of addressing emotional and behavioural problems in very young children with autism and/or developmental delay. The need for early support and intervention for mothers, fathers and families in this context was also evidenced. As research has shown that behavioural and emotional problems persist into adolescence and young adulthood, understanding of these issues in very young children and their parents has important implications for intervention and long-term outcomes.