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1. A three-arm randomised phase II study of the MEK inhibitor selumetinib alone or in combination with paclitaxel in metastatic uveal melanoma

Author

Sacco, Joseph J., Jackson, Richard, Corrie, Pippa, Danson, Sarah, Evans, T.R. Jeffry, Ochsenreither, Sebastian, Kumar, Satish, Goodman, Andrew, Larkin, James, Karydis, Ioannis, Steven, Neil, Lorigan, Paul, Plummer, Ruth, Patel, Poulam, Psarelli, Eftychia, Olsson-Brown, Anna, Shaw, Heather, Leyvraz, Serge, Handley, Louise, Rawcliffe, Charlotte, and Nathan, Paul

Published
2024
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2. Movement disorders and catatonia-like presentations in rare genetic syndromes

Author

Handley, Louise, Wittkowski, Anja, and Danquah, Adam

Subjects
362.19685, rett syndrome, angelman syndrome, fragile x syndrome, cornelia de lange syndrome, intellectual disabilities, movement, genetic syndromes, catatonia
Abstract

The prevalence of Autism Spectrum Disorder (ASD) and its defining features has been increasingly investigated in genetic syndromes associated with intellectual disability, with syndrome specific profiles reported. The experience of catatonia and other movement disorders in people with ASD has been increasing highlighted within both research and diagnostic guidelines. However, these issues have not typically been investigated alongside other features of ASD within research into genetic syndromes. The first paper in this thesis provides a review of the literature on movement disorders in genetic syndromes associated with ASD, which focuses on the prevalence of reported movement disorders, the methods of assessment used, and the quality of research to date. An empirical study is reported in Paper 2. Within a cohort of individuals with Cornelia de Lange and Fragile X syndromes the prevalence of attenuated behaviour [autistic catatonia] is examined, based on parent/carer report, and the extent to which features of ASD predict later attenuated behaviour is investigated. Paper 3 provides a critical reflection on the first two papers as well as some wider considerations on undertaking research in this area. The results of both the literature review and the empirical study indicated that across a number of genetic syndromes (Angelman syndrome, Cornelia de Lange syndrome, Fragile X syndrome and Rett syndrome) attenuated behaviour [autistic catatonia] and/or movement disorders affect a substantial proportion of individuals. Furthermore, repetitive behaviours, one of the characteristic features of ASD, appear to predict later attenuated behaviour in Cornelia de Lange and Fragile X syndromesThe results presented in this thesis have important implications for the way services support individuals with specific genetic syndromes. Paper 1 confirms the high prevalence of movement problems in Angelman and Rett syndromes, and Paper 2 provides a new insight into movement problems in Cornelia de Lange and Fragile X syndromes. Movement disorders are reported to impact negatively on wellbeing and quality of life in people with ASD, and are likely to have a similar impact on the lives of people with genetic syndromes. Greater awareness and recognition of movement problems in CdLS and FXS is required, and although specialist services may already be aware of some of the above issues, there should be an increased emphasis on ensuring that community services are aware of the needs of individuals with genetic syndromes, including the implications of movement problems for support needs and quality of life.

Published
2016

3. Service Use and Access in Young Children with an Intellectual Disability or Global Developmental Delay: Associations with Challenging Behaviour

Author

Adams, Dawn, Handley, Louise, Simkiss, Doug, Walls, Emily, Jones, Alison, Knapp, Martin, Romeo, Renee, and Oliver, Chris

Abstract

Background: Challenging behaviours are frequently shown by children with an intellectual disability. This study documents service use within this population and explores its relationship with challenging behaviours and child and parent characteristics.Method Forty-nine mothers of young children with an intellectual disability or global developmental delay completed questionnaires focusing on child behaviour, parental mental health, and service use. Results: Maternal mental health was not associated with services accessed. Cost of services accessed differed by topography of challenging behaviour for destruction of the environment or aggression. No differences were noted for self-injurious behaviour. Conclusion: In this small study, topography of challenging behaviour impacts on the frequency and/or duration (and therefore cost) of community-based health care accessed. Behaviours that have external impact, such as aggression and destruction of the environment, are associated with a higher cost of services used, a pattern not noted for behaviours that had less external impact (e.g., self-injurious behaviour).

Published
2018
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4. Aggressive and self-injurious behaviour : towards a community early intervention strategy

Author

Handley, Louise Rosemary

Subjects
150, BF Psychology
Abstract

In order to provide early intervention services for aggressive and self-injurious behaviour to a total population of children with intellectual disabilities, a community strategy must be developed, to complement programmes within specialist schools, services and support groups. Within this thesis a number of important elements of a community early intervention strategy were explored. A recruitment strategy based within community child health services was trialled. Within the community cohort of children identified specific putative risk markers for aggressive and self-injurious behaviour were examined, indicating several suitable candidates for screening. A more in depth examination of this community cohort highlighted a complex psychological profile, with high levels of Autism Spectrum Disorder and Attention Deficit/ Hyperactivity Disorder type characteristics. An assessment protocol based on traditional functional analytic methods was also trialled within a sub-group of high risk children. Whilst a useful starting point was identified for the majority of children, serious barriers to recruitment were identified, and a more comprehensive assessment protocol is required. High levels of parental anxiety and depression symptoms, associated with avoidant coping strategies and negative views about child behaviour, were also reported. The results presented within this thesis have important implications for the development of a community early intervention pathway. Specific considerations relating to screening, recruitment, assessment and family context are necessary when implementing early intervention within a community cohort of children.

Published
2014

5. A Comparison of Two Methods for Recruiting Children with an Intellectual Disability

Author

Adams, Dawn, Handley, Louise, Heald, Mary, Simkiss, Doug, Jones, Alison, Walls, Emily, and Oliver, Chris

Abstract

Background: Recruitment is a widely cited barrier of representative intellectual disability research, yet it is rarely studied. This study aims to document the rates of recruiting children with intellectual disabilities using two methods and discuss the impact of such methods on sample characteristics. Methods: Questionnaire completion rates are compared between (i) participants being approached in child development centre waiting rooms and (ii), one year later, the same participants being invited to take part by phone, email and/or post. Results: The face-to-face recruitment method resulted in a better recruitment rate (58.5% compared to 18.5%) and a larger sample (n = 438) than the telephone/email/post sample (n = 40). It also required less hours of researcher time per completed questionnaire. Conclusions: In-line with previous research, recruitment of participants with intellectual disabilities (or their parents/carers) requires significant time and resources to get a sample of an acceptable size.

Published
2017
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10. Service use and access in young children with an intellectual disability or global developmental delay: Associations with challenging behaviour.

Author

Adams, Dawn, Handley, Louise, Simkiss, Doug, Walls, Emily, Jones, Alison, Knapp, Martin, Romeo, Renee, and Oliver, Chris

Subjects
*DEVELOPMENTAL disabilities, *AGGRESSION (Psychology), *CHILD behavior, *COMMUNITY health services, *HEALTH services accessibility, *MATERNAL health services, *MEDICAL care costs, *MENTAL health services, *PEOPLE with intellectual disabilities, *PARENT-child relationships, *POPULATION geography, *QUESTIONNAIRES, *SELF-injurious behavior, *TIME, *CHILDREN, *PSYCHOLOGY
Abstract

Background Challenging behaviours are frequently shown by children with an intellectual disability. This study documents service use within this population and explores its relationship with challenging behaviours and child and parent characteristics.Method Forty-nine mothers of young children with an intellectual disability or global developmental delay completed questionnaires focusing on child behaviour, parental mental health, and service use.Results Maternal mental health was not associated with services accessed. Cost of services accessed differed by topography of challenging behaviour for destruction of the environment or aggression. No differences were noted for self-injurious behaviour.Conclusion In this small study, topography of challenging behaviour impacts on the frequency and/or duration (and therefore cost) of community-based health care accessed. Behaviours that have external impact, such as aggression and destruction of the environment, are associated with a higher cost of services used, a pattern not noted for behaviours that had less external impact (e.g., self-injurious behaviour). [ABSTRACT FROM AUTHOR]

Published
2018
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12. A Comparison of Two Methods for Recruiting Children with an Intellectual Disability.

Author

Adams, Dawn, Handley, Louise, Heald, Mary, Simkiss, Doug, Jones, Alison, Walls, Emily, and Oliver, Chris

Subjects
*PEOPLE with intellectual disabilities, *QUESTIONNAIRES, *CHILDREN with disabilities, *HUMAN research subjects, *PATIENT selection
Abstract

Background Recruitment is a widely cited barrier of representative intellectual disability research, yet it is rarely studied. This study aims to document the rates of recruiting children with intellectual disabilities using two methods and discuss the impact of such methods on sample characteristics. Methods Questionnaire completion rates are compared between (i) participants being approached in child development centre waiting rooms and (ii), one year later, the same participants being invited to take part by phone, email and/or post. Results The face-to-face recruitment method resulted in a better recruitment rate (58.5% compared to 18.5%) and a larger sample (n = 438) than the telephone/email/post sample (n = 40). It also required less hours of researcher time per completed questionnaire. Conclusions In-line with previous research, recruitment of participants with intellectual disabilities (or their parents/carers) requires significant time and resources to get a sample of an acceptable size. [ABSTRACT FROM AUTHOR]

Published
2017
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13. Perspective modulates gambling choices

Author

Ziegler, Fenja, Handley, Louise, Samson, Dana, Ziegler, Fenja, Handley, Louise, and Samson, Dana

Abstract

We know a great deal about risk seeking and risk aversive behaviour in making decisions for yourself at both the behavioural and neural levels (e.g. Loewenstein et al., 2008), but we know comparatively little about the processes that underlie making decisions for others. We tested 39 undergraduate students in a gambling task (De Martino et al., 2006), making forced choice decisions between a sure option, framed as loss or gain, and a risky gamble option, both for themselves and for another person. Effects of framing varied between individuals and participants were divided into a high and a low susceptibility group for analysis. The low susceptibility group was risk neutral for self decisions, but not for other decisions, making more gambling decisions in the loss than gain frames, t(18)=-3.49, p=.003. While the high susceptibility group made more gambling choices in the loss and gain frames for both self, t(19)=- 10.57, p=.0001, d= -3.38, and other decisions, t(19)=-6.62, p=.001, they made significantly more gambling choices in the gain frame for other, t(19)=-4.59, p=.001. The low and high susceptibility groups differ only in choices they make for themselves, but there is no difference in the choices they make for another person.

14. Service use and access in young children with an intellectual disability or global developmental delay: associations with challenging behaviour

Author

Adams, Dawn, Handley, Louise, Simkiss, Doug, Walls, Emily, Jones, Alison, Knapp, Martin, Romeo, Renee, Oliver, Chris, Adams, Dawn, Handley, Louise, Simkiss, Doug, Walls, Emily, Jones, Alison, Knapp, Martin, Romeo, Renee, and Oliver, Chris

Abstract

Background Challenging behaviours are frequently shown by children with an intellectual disability. This study documents service use within this population and explores its relationship with challenging behaviours and child and parent characteristics. Method Forty-nine mothers of young children with an intellectual disability or global developmental delay completed questionnaires focusing on child behaviour, parental mental health, and service use. Results Maternal mental health was not associated with services accessed. Cost of services accessed differed by topography of challenging behaviour for destruction of the environment or aggression. No differences were noted for self-injurious behaviour. Conclusion In this small study, topography of challenging behaviour impacts on the frequency and/or duration (and therefore cost) of community-based health care accessed. Behaviours that have external impact, such as aggression and destruction of the environment, are associated with a higher cost of services used, a pattern not noted for behaviours that had less external impact (e.g., self-injurious behaviour).

15. Protect, promote and succeed.

Author

Handley, Louise and Ludlam, Sara

Subjects
ASSET protection, INTELLECTUAL property, PATENT applications, BUSINESS models, PREVENTION of intellectual property infringement
Abstract

The article urges science companies to understand the importance of protecting their assets and intellectual property (IP) in order to become commercially success. Topics discussed are the importance of filing patent applications as part of a business model, and the types of asset suited to particular types of IP protection. Measures suggested under a proactive IP protection strategy include evaluation of competitors, use of courts to prevent infringers, and consultation with advisors.

Published
2015

16. Untitled.

Author

Handley, Louise

Subjects
CONSUMERS, SERVICE level agreements, SERVICE industries
Abstract

The article reports that the controversy surrounding the Wikileaks and the subsequent action taken by its service provider Amazon. Com Inc. which has caused several customers and service providers to take a second look at the terms of their service level agreements. As stated, due to the lack of recognized standards the customers are stressing for the establishment of an industry-wide approach to service level agreements and codes of practice.

Published
2011

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