Aida Malovic

Asperger syndrome and anxiety disorders (PAsSA) treatment trial: a study protocol of a pilot, multicentre, single-blind, randomised crossover trial of group cognitive behavioural therapy

Introduction A number of studies have established that children, adolescents and adults with Asperger syndrome (AS) and high functioning autism (HFA) have significant problems with anxiety. Cognitive behavioural therapy (CBT) is an effective treatment for anxiety in a variety of clinical populations. There is a growing interest in exploring the effectiveness of CBT for people with AS who have mental health problems, but currently there are no known clinical trials involving adults with AS or HFA. Studies with children who have AS have reported some success. The current study aims to examine whether modified group CBT for clinically significant anxiety in an AS population is likely to be efficacious. Methods and analysis This study is a randomised, single-blind crossover trial. At least 36 individuals will be recruited and randomised into a treatment arm or a waiting-list control arm. During treatment, individuals will receive 3 sessions of individual CBT, followed by 21 sessions of group CBT. Primary outcome measures focus on anxiety. Secondary outcome measures focus on everyday social and psychiatric functioning, additional measures of anxiety and fear, depression, health-related quality of life and treatment cost. Assessments will be administered at pregroup and postgroup and at follow-up by researchers who are blinded to group allocation. The trial aims to find out whether or not psychological treatments for anxiety can be adapted and used to successfully treat the anxiety experienced by people with AS. Furthermore, we aim to determine whether this intervention represents good value for money. Ethics and dissemination The trial received a favourable ethical opinion from a National Health Service (NHS) Research Ethics Committee. All participants provided written informed consent. Findings will be shared with all trial participants, and the general public, as well as the scientific community. Trial Registration ISRCTN 30265294 (DOI: 10.1186/ISRCTN30265294), UKCRN 8370.

“I felt that I deserved it” – experiences and implications of disability hate crime

Purpose – The purpose of this paper is to summarise key findings and recommendations from the “Living in Fear” research project focusing on the experiences of people with learning disabilities and autism related to disability hate crime and the experience of the police in dealing with such incidents. Design/methodology/approach – Methods included: first, a postal survey with 255 people with learning disabilities or autism (or their carers for people with more severe disabilities), of whom 24 also took part in semi-structured interviews; and second, an electronic survey of the knowledge and experience of 459 police officers or support staff. Findings – Just under half of participants had experienced some form of victimisation. The Police reported problems with the definition of disability hate crime and challenges to responding effectively. Social implications – A case study from the research highlights some of the key findings and is linked to implications for people with learning disabilities and autism,...

The People with Asperger syndrome and anxiety disorders (PAsSA) trial: a pilot multicentre, single-blind randomised trial of group cognitive-behavioural therapy.

Background There is a growing interest in using cognitive–behavioural therapy (CBT) with people who have Asperger syndrome and comorbid mental health problems. Aims To examine whether modified group CBT for clinically significant anxiety in an Asperger syndrome population is feasible and likely to be efficacious. Method Using a randomised assessor-blind trial, 52 individuals with Asperger syndrome were randomised into a treatment arm or a waiting-list control arm. After 24 weeks, those in the waiting-list control arm received treatment, while those initially randomised to treatment were followed up for 24 weeks. Results The conversion rate for this trial was high (1.6:1), while attrition was 13%. After 24 weeks, there was no significant difference between those randomised to the treatment arm compared with those randomised to the waiting-list control arm on the primary outcome measure, the Hamilton Rating Scale for Anxiety. Conclusions Trials of psychological therapies with this population are feasible. Larger definitive trials are now needed. Declaration of interest None. Copyright and usage

Keep Safe: the development of a manualised group CBT intervention for adolescents with ID who display harmful sexual behaviours

Purpose The purpose of this paper is to focus on the development of Keep Safe, a manualised group intervention for adolescents with intellectual disabilities (ID) who display harmful sexual behaviour (HSB) as the initial phase of a feasibility study. National reports have highlighted the need for the development of specialist programmes, as adolescents with ID make up a significant proportion of young people referred to specialist HSB services and there is a lack of evidence or practice-based interventions for them. Aims included taking account of adolescents’ and families’ needs, motivations and practical commitments, integrating best- practice and being accessible and appropriate across different types of services. Design/methodology/approach Keep Safe development progressed from the practitioner/researcher collaborative young sex offender treatment services collaborative-ID through a project team, Keep Safe development group, comprising a range of practitioners with a variety of clinical expertise across services and an Advisory Group of people with ID. An expert-consensus methodology based on the Delphi method was used. The iterative process for the manual draws on the slim practice-based evidence from UK, New Zealand, North America and Australia. Findings Keep Safe comprises six modules distributed through 36 term-time young people’s sessions, alongside 16 concurrent parental/ carer sessions (some joint). The main focus of Keep Safe is to enhance well-being and reduce harm. Four initial sites volunteered as feasibility leads, and two more were added as recruitment was more difficult than foreseen. Originality/value National reports have highlighted the need for the development of specialist programmes, as adolescents with ID make up a significant proportion of young people referred to specialist HSB services and there is a lack of evidence or practice-based interventions for them. This study is innovative and valuable given the recognition that research and practice is significantly lacking in this area.

Economic Evaluation alongside a Randomised Controlled Crossover Trial of Modified Group Cognitive Behavioural Therapy for Anxiety Compared to Treatment-as-Usual in Adults with Asperger Syndrome

Background: There is a growing interest in using group cognitive–behavioral therapy (CBT) with people who have Asperger syndrome (AS) and comorbid mental health problems. This study aims to assess the cost-effectiveness of modified group CBT for adults with AS experiencing co-occurring anxiety compared to treatment-as-usual. Methods: Economic evaluation alongside a pilot, multicenter, single-blind, randomized controlled crossover trial. Costs from the UK public sector (National Health Service and Social Services) and societal perspectives, quality-adjusted life years (QALYs), incremental net (monetary) benefit (INB), expected value of perfect information, expected value of sample information, expected net gain of sampling, and efficient sample size of a future trial are reported. Results: Over 48 weeks, from the societal perspective, CBT results in additional costs of £6,647, with only a 0.015 incremental gain in QALYs, leading to a negative INB estimate of £6,206 and a 23% probability of cost-effectiveness at a threshold of £30,000/QALY. Results from sensitivity analyses support the unlikely cost-effectiveness of CBT but indicate the potential for cost-effectiveness over longer time horizons. Eliminating decision uncertainty is valued at £277 million, and the efficient sample size for a future trial is estimated at 1,200 participants per arm. Limitations: Relatively small sample size and prevalence of missing data present challenges to the interpretation of the results. Conclusions: Current evidence from this small pilot study suggests that, on average, modified group CBT is not cost-effective. However, there is much decision uncertainty so such a conclusion could be wrong. A large, full-scale trial to reduce uncertainty would be an efficient investment for the UK health economy.

Group cognitive behavioural therapy for people with Asperger Syndrome who have problems with anxiety: the initial results of the PAsSA pilot treatment trial

Aim: Our goal was to test the efficacy of an adapted health promotionintervention entitled ‘HealthMatters Program’ (originally developed by Marks etal., 2013) on health related outcomes for people with intellectual disabilities (ID),and on staffs’ knowledge and attitudes in supporting this population to adopt ahealthy lifestyle. This study also explored facilitators and barriers to engagementin health promotion activities. Method: A multiphase mixed methods approachwas used. A pre-post single design tested the outcomes of the programme on 28staff (attitudes and nutrition knowledge) and 46 individuals with ID (weight,nutrition knowledge, health behaviour, nutrition self-efficacy and socialsupports). These outcomes were assessed pre-intervention, and 3 and 6 monthspost-intervention. Following this the barriers and facilitators to implementing theprogramme were explored within focus groups. Results: Nutritional knowledgeoutcomes improved significantly for staff and people with ID. The focus groupsfound that consistent commitment from staff, managers and individuals with IDwas critical to ensuring successful application of knowledge acquired from theprogramme in order to positively change health knowledge and behaviours.Conclusion: Organisational, staff and service user buy in influenced successfulimplementation of the adapted ‘HealthMatters Program’ and adherence tohealthy lifestyles.