Journal of Intellectual Disability Research, 53(10), October 2009, pp.852-873.
Publisher:
Wiley
There is growing interest in the association between autism spectrum disorders (ASDs), or ASD-related phenomenology, and a number genetically linked conditions. This systematic review examines the possibility of such an association in the following syndrome groups; Fragile X, Rett, Tuberous Sclerosis Complex, Down, Angelman, CHARGE, and Phenylketonuria. Special consideration is given to the role of intellectual disability (ID) in assessing the association. The first section looks specifically at the possible associations while the second section focuses on the clinical implications in terms of diagnosis and intervention, and the implication for conceptual and theoretical frameworks. Formal diagnostic assessments suggest an association between ASD and specific syndrome groups but detailed investigation reveals subtle but qualitative differences in the presentation of ASD-like phenomenology in particular groups. The degree of ID of the individual appears to play a part in the development and presentation of ASD-like characteristics but cannot solely account for the heightened prevalence of ASD characteristics in some specific syndromes. The authors suggest that caution is needed in interpreting the significance of superficial similarities between ASD and the behavioural phenotypes of certain genetically determined syndromes. However, recognition of ASD-like characteristics in individuals with genetic syndromes is crucial in ensuring that individuals receive appropriate support.
There is growing interest in the association between autism spectrum disorders (ASDs), or ASD-related phenomenology, and a number genetically linked conditions. This systematic review examines the possibility of such an association in the following syndrome groups; Fragile X, Rett, Tuberous Sclerosis Complex, Down, Angelman, CHARGE, and Phenylketonuria. Special consideration is given to the role of intellectual disability (ID) in assessing the association. The first section looks specifically at the possible associations while the second section focuses on the clinical implications in terms of diagnosis and intervention, and the implication for conceptual and theoretical frameworks. Formal diagnostic assessments suggest an association between ASD and specific syndrome groups but detailed investigation reveals subtle but qualitative differences in the presentation of ASD-like phenomenology in particular groups. The degree of ID of the individual appears to play a part in the development and presentation of ASD-like characteristics but cannot solely account for the heightened prevalence of ASD characteristics in some specific syndromes. The authors suggest that caution is needed in interpreting the significance of superficial similarities between ASD and the behavioural phenotypes of certain genetically determined syndromes. However, recognition of ASD-like characteristics in individuals with genetic syndromes is crucial in ensuring that individuals receive appropriate support.
Advances in Mental Health and Learning Disabilities, 3(3), September 2009, pp.3-9.
Publisher:
Emerald
Alzheimer’s disease and other dementias are at least as prevalent in older people with learning disabilities as in the general population. In addition, people with Down’s syndrome have high rates of early onset Alzheimer’s disease. Assessment of dementia in people with learning disabilities is made difficult by pre-existing cognitive and functional impairments and high rates of comorbid disorders. This paper discusses the assessment of dementia in people with learning disabilities. The assessment procedure needs to include a comprehensive description of baseline functioning and pattern of decline, rigorous medical work-up and treatment of identified conditions, serial cognitive assessments, and functional and risk assessments to guide care planning.
Alzheimer’s disease and other dementias are at least as prevalent in older people with learning disabilities as in the general population. In addition, people with Down’s syndrome have high rates of early onset Alzheimer’s disease. Assessment of dementia in people with learning disabilities is made difficult by pre-existing cognitive and functional impairments and high rates of comorbid disorders. This paper discusses the assessment of dementia in people with learning disabilities. The assessment procedure needs to include a comprehensive description of baseline functioning and pattern of decline, rigorous medical work-up and treatment of identified conditions, serial cognitive assessments, and functional and risk assessments to guide care planning.
Journal of Intellectual Disabilities, 13(1), March 2009, pp.55-76.
Publisher:
Sage
Place of publication:
London
Affective disorders, particularly depression, are common in adults with intellectual disabilities. However the detection of these disorders is hindered by the varied presentation of depressive symptoms across the range of intellectual disability. A systematic review of the available English-language diagnostic instruments for depressive disorders for adults with all levels of intellectual disability was undertaken. Studies were appraised based on the instruments' psychometric properties, sensitivity and specificity. Twenty one of 28 identified studies which contained original data on validity and reliability; the `gold standard' ranged from clinical opinion to other established instruments, some of which had limited validation in people with intellectual disability. In view of the benefits of psychological treatments for common mental disorders, it is important to develop instruments to be used in monitoring cognitive as well as behavioural outcomes for people with intellectual disability and depressive disorders.
Affective disorders, particularly depression, are common in adults with intellectual disabilities. However the detection of these disorders is hindered by the varied presentation of depressive symptoms across the range of intellectual disability. A systematic review of the available English-language diagnostic instruments for depressive disorders for adults with all levels of intellectual disability was undertaken. Studies were appraised based on the instruments' psychometric properties, sensitivity and specificity. Twenty one of 28 identified studies which contained original data on validity and reliability; the `gold standard' ranged from clinical opinion to other established instruments, some of which had limited validation in people with intellectual disability. In view of the benefits of psychological treatments for common mental disorders, it is important to develop instruments to be used in monitoring cognitive as well as behavioural outcomes for people with intellectual disability and depressive disorders.
Extended abstract:
Author
PEREZ-ACHIAGA N.; NELSON S.; HASSIOTIS A.;
Instruments for the detection of depressive symptoms in people with intellectual disabilities: a systematic review
Journal citation/publication details
Journal of Intellectual Disabilities, 13(1), March 2009, pp.55-76.
Summary
Of the twenty one studies included in this narrative review, seventeen looked at twelve newly developed instruments for screening depression in adults with intellectual disabilities and four assessed modified instruments. The studies varied considerably in their methodological quality and the comparison instrument used (if used at all). In particular there was a lack of reporting of statistical data.
Context
Although people with an intellectual disability have been reported to experience higher rates of mental disorders compared to the general population, there is a lack of consensus on which instruments are valid and reliable for diagnosis and screening. The aim of this review was to assess the validity and reliability of instruments used to detect depressive symptoms in adults across the range of intellectual disabilities, with a view to identifying those that might merit further investigation.
Methods
What sources were searched? The databases Medline, Embase, PsycINFO, and CINAHL were searched for articles published between January 1953 and January 2007. The 'Journal of Intellectual Disabilities Research', 'American Journal on Mental Retardation' and 'Journal of Applied Research in Intellectual Disabilities' and the bibliographies of relevant papers were hand searched.
What search terms/strategies were used? No details of the search terms or of the strategies used are given. There is an indication that the search terms were selected 'to take into account temporal changes and geographical variations in the terminology used to define people with intellectual disability'.
What criteria were used to decide on which studies to include? Studies were eligible for inclusion if they reported original data on the development, modification or use of an instrument for screening depression in adults with an intellectual disability of any severity and in any setting.
Who decided on their relevance and quality? The first author was responsible for data extraction; the other two authors assessed all the studies found against the inclusion criteria. Methodological quality was assessed on the basis of the psychometric properties of the instrument under investigation. Studies were coded as 'A' for adequate, 'B' for unclear or not reported, and 'C' for inadequate or not used.
How many studies were included and where were they from? Twenty eight studies were initially identified; seven were excluded on further examination leaving a total of 21 studies that were included in the review. The reasons for exclusion are detailed for each study. There is no indication of the geographical location of the studies.
How were the study findings combined? The review is narrative in nature. The studies reporting on de novo and modified instruments are tabulated separately in Tables 2 and 3 respectively, with details of the type of instrument used, sample size and degree of intellectual disability, study setting, comparison instrument, and quality rating.
Findings of the review
Seventeen studies presented data on 12 newly developed instruments for screening depression in adults with intellectual disability; the majority (11) of instruments were rating scales, semi structured clinical interviews (3) or checklists. Sample sizes ranged from 40 to 709. Most of the instruments were informant administered. Full details on psychometric properties, including sensitivity, specificity and reliability were available for only four of the new instruments: the Psychiatric Assessment Schedule for Adults with Developmental Disability (PAS-ADD) checklist, the MiniPAS-ADD, the Glasgow Depression Scale (GDS), and the Self Report Depression Questionnaire (SRDQ). Results on validity and reliability are presented in Tables 4 and 5. Four studies investigated modified instruments; three used a modified version of the Beck Depression Inventory and one modified ICD-10 research diagnostic criteria. Sample sizes ranged from 11 to 120.
Overall, comparison instruments included clinical opinion (5 studies), and other established instruments, some of which were inappropriate; no comparison was used in three studies and data was not given in another. Data on sensitivity and specificity was available for less than half of the instruments (none of the studies using modified instruments provided information on sensitivity, specificity or reliability). None of the studies provided 95% confidence intervals and only a few included p-values.
Authors' conclusions
'More psychometrically robust valid diagnostic instruments need to be developed in order to address any concerns about mental illness, including depression, being under- or overdiagnosed in people with intellectual disability'.
Journal of Public Mental Health, 8(1), March 2009, pp.37-45.
Publisher:
Emerald
Understanding the mental health problems of children who have learning disabilities presents huge challenges across many domains. The paper examines some of the assessment frameworks that may be used, offers clinical guidance on collecting information and suggests ways in which various theoretical approaches can be used to derive comprehensive case formulations. The common assessment approaches mentioned are psychiatric, behavioural, ecological and early attachment. A case study is used to discuss the use of the frameworks. An emphasis is placed on the use of structured methods to improve reliability and validity.
Understanding the mental health problems of children who have learning disabilities presents huge challenges across many domains. The paper examines some of the assessment frameworks that may be used, offers clinical guidance on collecting information and suggests ways in which various theoretical approaches can be used to derive comprehensive case formulations. The common assessment approaches mentioned are psychiatric, behavioural, ecological and early attachment. A case study is used to discuss the use of the frameworks. An emphasis is placed on the use of structured methods to improve reliability and validity.
Subject terms:
learning disabilities, mental health problems, psychiatry, young people, assessment, children, diagnosis;
Journal of Intellectual Disability Research, 53(6), June 2009, pp.548-558.
Publisher:
Wiley
In persons with deafblindness, it is hard to distinguish autism spectrum disorders from several deafblind specific behaviours caused by the dual sensory impairments, especially when these persons are also intellectually disabled. As a result, there is an over-diagnosis of autism in persons who are deafblind leading to unsuitable interventions. Autism as specified by the DSM-IV was studied in 10 persons with congenital deafblindness with profound intellectual disabilities. Behaviours of people with deafblindness and autism (n = 5) and of people with deafblindness without autism (n = 5) were observed in a semi-standardised assessment. Results showed that all people with deafblindness had impairments in social interaction, communication and language. In contrast to persons without autism, people with deafblindness and autism showed significantly more impairments in reciprocity of social interaction, quality of initiatives to contact and the use of adequate communicative signals and functions. No differences between the groups were found for quantity and persistence of stereotyped behaviour, quality of play and exploration and adequate problem-solving strategies. This study indicates that there are some possibilities to differentiate autism from behaviours specific for deafblindness. It also confirms the large overlap in overt behaviours between people with deafblindness and persons with autism.
In persons with deafblindness, it is hard to distinguish autism spectrum disorders from several deafblind specific behaviours caused by the dual sensory impairments, especially when these persons are also intellectually disabled. As a result, there is an over-diagnosis of autism in persons who are deafblind leading to unsuitable interventions. Autism as specified by the DSM-IV was studied in 10 persons with congenital deafblindness with profound intellectual disabilities. Behaviours of people with deafblindness and autism (n = 5) and of people with deafblindness without autism (n = 5) were observed in a semi-standardised assessment. Results showed that all people with deafblindness had impairments in social interaction, communication and language. In contrast to persons without autism, people with deafblindness and autism showed significantly more impairments in reciprocity of social interaction, quality of initiatives to contact and the use of adequate communicative signals and functions. No differences between the groups were found for quantity and persistence of stereotyped behaviour, quality of play and exploration and adequate problem-solving strategies. This study indicates that there are some possibilities to differentiate autism from behaviours specific for deafblindness. It also confirms the large overlap in overt behaviours between people with deafblindness and persons with autism.
British Journal of General Practice, 59(564), July 2009, pp.503-509.
Publisher:
Royal College of General Practitioners
Cancer incidence among people with learning disabilities is rising. This study aimed to provide insight into the experiences and needs of people with learning disabilities who have cancer. A prospective qualitative study was carried out using ethnographic methods. The participants were 13 people with learning disabilities ranging from mild to severe, who had a cancer diagnosis. The main method of data collection was participant observation (over 250 hours). The median length of participation was 7 months. Participants' cancer experiences were shaped by their previous experience of life, which included deprivation, loneliness, and a lack of autonomy and power. They depended on others to negotiate contact with the outside world, including the healthcare system. This could lead to delayed cancer diagnosis and a lack of treatment options being offered. Most participants were not helped to understand their illness and its implications. Doctors did not make an assessment of capacity, but relied on carers' opinions. The authors conclude that urgent action is warranted by findings of late diagnosis, possible discrimination around treatment options, and lack of patient involvement and assessment of capacity in decision making. There are significant gaps in knowledge and training among most health professionals, leading to disengaged services that are unaware of the physical, emotional, and practical needs of people with learning disabilities, and their carers.
Cancer incidence among people with learning disabilities is rising. This study aimed to provide insight into the experiences and needs of people with learning disabilities who have cancer. A prospective qualitative study was carried out using ethnographic methods. The participants were 13 people with learning disabilities ranging from mild to severe, who had a cancer diagnosis. The main method of data collection was participant observation (over 250 hours). The median length of participation was 7 months. Participants' cancer experiences were shaped by their previous experience of life, which included deprivation, loneliness, and a lack of autonomy and power. They depended on others to negotiate contact with the outside world, including the healthcare system. This could lead to delayed cancer diagnosis and a lack of treatment options being offered. Most participants were not helped to understand their illness and its implications. Doctors did not make an assessment of capacity, but relied on carers' opinions. The authors conclude that urgent action is warranted by findings of late diagnosis, possible discrimination around treatment options, and lack of patient involvement and assessment of capacity in decision making. There are significant gaps in knowledge and training among most health professionals, leading to disengaged services that are unaware of the physical, emotional, and practical needs of people with learning disabilities, and their carers.
HASSIOTIS Angela, BARRON Diana Andrea, HALL Ian, (eds.)
Publisher:
Wiley-Blackwell
Publication year:
2009
Pagination:
276p.
Place of publication:
Chichester
This guide to the management of mental health problems in people with learning disabilities has been written by nearly 30 contributors from the United Kingdom, United States, Canada, Ireland and Australia. Sixteen chapters cover topics including effective communication, clinical assessment, assessing mental capacity, decision making, depression, anxiety, obsessive compulsive disorders (OCDs), post traumatic stress disorder (PTSD), psychoses, autistic spectrum disorders (ASDs), substance misuse, challenging behaviour, interaction of physical with mental health, older people, mentally disordered offenders, mental health crises, community care and pharmacological and psychological interventions. Two appendices entitled ‘Critique of the ICD 10 and DSM IV based classification of mental disorders in intellectual disability’ and ‘A to Z of disciplines that may contribute to the multi-and interdisciplinary work as applied to mood and anxiety disorders’ are also included. The publication is aimed at health professionals to develop their understanding of mental health issues of people with learning disabilities.
This guide to the management of mental health problems in people with learning disabilities has been written by nearly 30 contributors from the United Kingdom, United States, Canada, Ireland and Australia. Sixteen chapters cover topics including effective communication, clinical assessment, assessing mental capacity, decision making, depression, anxiety, obsessive compulsive disorders (OCDs), post traumatic stress disorder (PTSD), psychoses, autistic spectrum disorders (ASDs), substance misuse, challenging behaviour, interaction of physical with mental health, older people, mentally disordered offenders, mental health crises, community care and pharmacological and psychological interventions. Two appendices entitled ‘Critique of the ICD 10 and DSM IV based classification of mental disorders in intellectual disability’ and ‘A to Z of disciplines that may contribute to the multi-and interdisciplinary work as applied to mood and anxiety disorders’ are also included. The publication is aimed at health professionals to develop their understanding of mental health issues of people with learning disabilities.
Subject terms:
intervention, learning disabilities, mental health problems, person-centred care, psychiatry, assessment, autistic spectrum conditions, diagnosis;
Journal of Critical Psychology Counselling and Psychotherapy, 10(1), March 2009, pp.1-11.
This paper discusses the ethical importance of the contextual, professional and service user perspectives in the process of diagnosing a patient as having learning disabilities, by using a case study of a young Venezuelan girl, with the fictional name of ‘Usnavy’. In addition, as a piece of self-reflection, this personal account of the author’s experiences in the field of psychology critically argues the legitimate right of psychologists to diagnose, or label, a human being, in the context of the impact it may, or may not, have, on the rest of, especially children’s, lives. Under sections entitled, ‘cultural practices’, ‘what is diagnosis?’, ‘western practices’, ‘Usnavy’s story’, ‘ethics and politics’ and ‘the missing individual’, the author gives international definitions and discrepancies between terminologies, and an account of key experiences since graduating which have shaped her periods of employment in clinical psychology, in the USA and Venezuela. She concludes by questioning the need for a formal diagnosis at the beginning of the assessment and intervention period.
This paper discusses the ethical importance of the contextual, professional and service user perspectives in the process of diagnosing a patient as having learning disabilities, by using a case study of a young Venezuelan girl, with the fictional name of ‘Usnavy’. In addition, as a piece of self-reflection, this personal account of the author’s experiences in the field of psychology critically argues the legitimate right of psychologists to diagnose, or label, a human being, in the context of the impact it may, or may not, have, on the rest of, especially children’s, lives. Under sections entitled, ‘cultural practices’, ‘what is diagnosis?’, ‘western practices’, ‘Usnavy’s story’, ‘ethics and politics’ and ‘the missing individual’, the author gives international definitions and discrepancies between terminologies, and an account of key experiences since graduating which have shaped her periods of employment in clinical psychology, in the USA and Venezuela. She concludes by questioning the need for a formal diagnosis at the beginning of the assessment and intervention period.
Subject terms:
learning disabilities, multicultural approach, pre-school children, psychology, service users, case studies, children, diagnosis, ethics, health professionals;
British Journal of Learning Disabilities, 37(4), December 2009, pp.257-264.
Publisher:
Wiley
This study, as part of a larger study to develop best practice recommendations for informing families of their child's disabilities, researched the elements of best practice required when communicating this news to families. Tracing the convergence between these practice recommendations and the UN Convention on the Rights of Persons with Disabilities, in particular with regard to the provision of positive, realistic and hopeful communication, this study employed a mixed methodology involving 22 focus groups and a questionnaire survey of 1588 professionals and 584 families. Whilst the study found that the large majority of parents and professionals supported the recommendation of providing families with positive, realistic and hopeful messages at the time of diagnosis, less than half of the parents surveyed actually reported receiving communication of this type, indicating that some professionals may struggle with the fear of providing false hope, or a fear of litigation and a lack of training. However, this research also identified positive and hopeful messages that are not in conflict with providing honest and realistic communication including: acknowledging the dignity and worth of the child as an individual; indicating that there is help available for parents; and informing families about the spectrum of possible outcomes for their child rather than the worst case scenario. This provision of appropriate positive, realistic messages and hope is aligned with the principles of the UN Convention.
This study, as part of a larger study to develop best practice recommendations for informing families of their child's disabilities, researched the elements of best practice required when communicating this news to families. Tracing the convergence between these practice recommendations and the UN Convention on the Rights of Persons with Disabilities, in particular with regard to the provision of positive, realistic and hopeful communication, this study employed a mixed methodology involving 22 focus groups and a questionnaire survey of 1588 professionals and 584 families. Whilst the study found that the large majority of parents and professionals supported the recommendation of providing families with positive, realistic and hopeful messages at the time of diagnosis, less than half of the parents surveyed actually reported receiving communication of this type, indicating that some professionals may struggle with the fear of providing false hope, or a fear of litigation and a lack of training. However, this research also identified positive and hopeful messages that are not in conflict with providing honest and realistic communication including: acknowledging the dignity and worth of the child as an individual; indicating that there is help available for parents; and informing families about the spectrum of possible outcomes for their child rather than the worst case scenario. This provision of appropriate positive, realistic messages and hope is aligned with the principles of the UN Convention.
Subject terms:
learning disabilities, rights, UN Convention on the Rights of Persons with Disabilities, United Nations, communication skills, children, diagnosis, families, good practice;
International Association for the Scientific Study of Intellectual Disabilities
Publication year:
2009
Pagination:
49p., bibliog.
Place of publication:
Canterbury
This systematic review summarises current knowledge on dementia in older people with learning disabilities. The review included papers published from 1997 to 2008. Findings are discussed in the areas of: epidemiology; presentation and symptoms; screening, assessment and diagnosis; non-pharmacological and pharmacological interventions and issues for carers.
This systematic review summarises current knowledge on dementia in older people with learning disabilities. The review included papers published from 1997 to 2008. Findings are discussed in the areas of: epidemiology; presentation and symptoms; screening, assessment and diagnosis; non-pharmacological and pharmacological interventions and issues for carers.