Development and Application of Medication Appropriateness Indicators for Persons with Advanced Dementia: A Feasibility Study

Background: No studies have been conducted in the UK context to date that categorise medications in terms of appropriateness for patients with advanced dementia, or that examine medication use in these vulnerable patients.

Objectives: The objectives of this study were to categorise the appropriateness of a comprehensive list of medications and medication classes for use in patients with advanced dementia; examine the feasibility of conducting a longitudinal prospective cohort study to collect clinical and medication use data; and determine the appropriateness of prescribing for nursing home residents with advanced dementia in Northern Ireland (NI), using the categories developed.

Methods: A three-round Delphi consensus panel survey of expert clinicians was used to categorise the appropriateness of medications for patients with advanced dementia [defined as having Functional Assessment Staging (FAST) scores ranging from 6E to 7F]. This was followed by a longitudinal prospective cohort feasibility study that was conducted in three nursing homes in NI. Clinical and medication use for participating residents with advanced dementia (FAST scores ranging from 6E to 7F) were collected and a short test of dementia severity administered. These data were collected at baseline and every 3 months for up to 9 months or until death. For those residents who died during the study period, data were also collected within 14 days of death. The appropriateness ratings from the consensus panel survey were retrospectively applied to residents’ medication data at each data collection timepoint to determine the appropriateness of medications prescribed for these residents.

Results: Consensus was achieved for 87 (90 %) of the 97 medications and medication classes included in the survey. Fifteen residents were recruited to participate in the longitudinal prospective cohort feasibility study, four of whom died during the data collection period. Mean numbers of medications prescribed per resident were 16.2 at baseline, 19.6 at 3 months, 17.4 at 6 months and 16.1 at 9 months. Fourteen residents at baseline were taking at least one medication considered by the consensus panel to be never appropriate, and approximately 25 % of medications prescribed were considered to be never appropriate. Post-death data collection indicated a decrease in the proportion of never appropriate medications and an increase in the proportion of always appropriate medications for those residents who died.

Conclusions: This study is the first to develop and apply medication appropriateness indicators for patients with advanced dementia in the UK setting. The Delphi consensus panel survey of expert clinicians was a suitable method of developing such indicators. It is feasible to collect information on quality of life, functional performance, physical comfort, neuropsychiatric symptoms and cognitive function for this subpopulation of nursing home residents with advanced dementia.

The Right to Appropriate and meaningful Education for Children with ASD

This paper will explore from a ‘child’s rights perspective’ the ‘right’ of children with autistic spectrum disorder (ASD) to appropriate and meaningful education.Human ‘rights’ principles within international law will be evaluated in relation to how they have been interpreted and applied in relation to achieving this ‘right’. The International Convention of the Rights of the Child (United Nations in Convention on the rights of the child, office of the high commissioner, United Nations, Geneva, 1989) and the convention on the rights of the person with disability (United Nations in Convention on the rights of person’s with disabilities and optional protocol, office of the high commissioner, United Nations, Geneva, 2006) amongst others will be utilised to argue the case for ‘inclusive’educational opportunities to be a ‘right’ of every child on the autistic spectrum. The efficacy of mainstream inclusion is explored, identifying the position that a ‘one size fits all’model of education is not appropriate for all children with ASD.

Hidden Contradictions and Conditionality: Conceptualisations of Inclusive Education in International Law

The nature of education that children with disabilities should receive has been subject to much debate. This article critically assesses the ways in which the international human rights framework has conceptualised ‘inclusive education’. It argues that the right to education for children with disabilities in international law is constitutive of hidden contradictions and conditionality. This is most evident with respect to conceptualisations of ‘inclusion’ and ‘support’, and their respective emphases upon the extent of individual impairment or ‘deficit’ rather than upon the extent of institutional or structural deficit. It is vital that the new Committee on the Rights of Persons with Disabilities pays close attention to the utilisation of these concepts lest the Convention on the Rights of Persons with Disabilities further legitimises the ‘special needs’ educational discourse to which children with disabilities have been subject.

Lost in translation: Public policies, evidence-based practice, and Autism Spectrum Disorder

Prevalence rates of autism spectrum disorder have risen dramatically over the past few decades (now estimated at 1:50 children). The estimated total annual cost to the public purse in the United States is US$137 billion, with an individual lifetime cost in the United Kingdom estimated at between £0.8 million and £1.23 million depending on the level of functioning. The United Nations Convention for the Rights of Persons with Disabilities has enshrined full and equal human rights—for example, for inclusion, education and employment—and there is ample evidence that much can be achieved through adequate support and early intensive behavioural interventions. Not surprisingly, most governments worldwide have devised laws, policies, and strategies to improve services related to autism spectrum disorder, yet intriguingly the approaches differ considerably across the globe. Using Northern Ireland as a case in point, we look at relevant governmental documents and offer international comparisons that illustrate inconsistencies akin to a “postcode lottery” of services.

The effect of choice on motivation for young children on the autism spectrum during discrete trial teaching

Self-determination and decision-making are acknowledged internationally as key rights of persons with disabilities and should play an important role in the development of educational plans and procedures. Not only is the chance for individuals with developmental disabilities to select their own tasks, leisure activities or reinforcers a valuable way of enhancing rights-based education and personal dignity, but choice-making opportunities may also function as a useful clinical or educational tool if they actually improve the efficacy of programmes aimed at the acquisition of socially relevant behaviours and life skills or the reduction of challenging behaviours.

The study reported here assessed whether or not choice affected effectiveness of an educational procedure for three children on the autism spectrum. Following a preference assessment, a number of discrete teaching trials were conducted with each child and, contingent upon targeted responses, either the child or the therapist selected one of three preferred reinforcer items. Reinforcer choice did not affect intervention effectiveness for two of the children; however, performance and motivation improved for the third child. Results re-affirmed the importance of thorough preference assessments prior to intervention and showed that additional stimulus choice contingent on the target response may improve motivation and outcomes for some children.

Multidisciplinary Teamwork in Autism: Can One Size Fit All?

Multidisciplinary practice has become an accepted approach in many education and social and health care fields. In fact, the right to a multidisciplinary assessment is enshrined in the United Nations Convention of the Rights for Persons with Disabilities (United Nations, 2007). In order to avert a 'one size fits all' response to particularly heterogeneous diagnoses, such as autism spectrum disorders (ASD), the National Institute for Clinical Excellence (NICE) recommends multidisciplinary input. Yet, multidisciplinarity lacks empirical evidence of effectiveness, is fraught with conceptual difficulties and methodological incompatibilities, and therefore there is a danger of resorting to an ill-defined eclectic 'hodgepodge' of interventions. Virtually all evidence-based interventions in autism and intellectual disabilities are behaviourally based. Not surprisingly, therefore, professionals trained in behaviour analysis to international standards are increasingly becoming key personnel in multidisciplinary teams. In fact, professionals from a range of disciplines seek training in behaviour analysis. In this article we brought together a multidisciplinary group of professionals from education, health, and social care, most of whom have a dual qualification in an allied health, social care, or educational profession, as well as in behaviour anlaysis. Together we look at the initial training in these professions and explore how behaviour analysis can offer a common and coherent conceptual framework for true multidisciplinarity, based on sound scientific knowledge about behaviour, without resort to reifying theories. We illustrate how this unifying approach can enhance evidence-based multidisciplinary practice so that 'one size' will fit all. Copyright © Australian Psychological Society Ltd 2014.

An international comparison of legal frameworks for supported and substitute decision-making in mental health services

There have been important recent developments in law, research, policy and practice relating to supporting people with decision-making impairments, in particular when a person’s wishes and preferences are unclear or inaccessible. A driver in this respect is the United Nations Convention on the Rights of Persons with Disabilities (CRPD); the implications of the CRPD for policy and professional practices are currently debated. This article reviews and compares four legal frameworks for supported and substitute decision-making for people whose decision-making ability is impaired. In particular, it explores how these frameworks may apply to people with mental health problems. The four jurisdictions are: Ontario, Canada; Victoria, Australia; England and Wales, United Kingdom (UK); and Northern Ireland, UK. Comparisons and contrasts are made in the key areas of: the legal framework for supported and substitute decision-making; the criteria for intervention; the assessment process; the safeguards; and issues in practice. Thus Ontario has developed a relatively comprehensive, progressive and influential legal framework over the past thirty years but there remain concerns about the standardisation of decision-making ability assessments and how the laws work together. In Australia, the Victorian Law Reform Commission (2012) has recommended that the six different types of substitute decision-making under the three laws in that jurisdiction, need to be simplified, and integrated into a spectrum that includes supported decision-making. In England and Wales the Mental Capacity Act 2005 has a complex interface with mental health law. In Northern Ireland it is proposed to introduce a new Mental Capacity (Health, Welfare and Finance) Bill that will provide a unified structure for all substitute decision-making. The discussion will consider the key strengths and limitations of the approaches in each jurisdiction and identify possible ways that further progress can be made in law, policy and practice.

Handbook of International Special Education:Northern Ireland

The intent of the Handbook of International Special Education is to provide a concise overview of special education services in countries across the world using the Article on Education in the United Nations Convention on the Rights of Persons with Disabilities as the analytical frame. The Handbook will provide concise, data-driven contributions from across the globe using two primary frames: the relationship between special and general education in the country and the country’s system as aligned with the Article on Education in the UN Convention on the Rights of Person with Disabilities.

The European Commission’s public consultation on the review of EU copyright rules: a response by the CREATe centre

This article presents the response of the Centre for Copyright and New Business Models in the Creative Economy (CREATe) to the consultation on reform of the EU copyright regime. Reviews the format of the consultation, notes the common problems in reporting data in such a format, and reproduces the consultation questions to which CREATe responded, together with a summary of its conclusions on topics including: (1) terms of copyright protection; (2) libraries and archives; (3) persons with disabilities; (4) remuneration of authors; (5) user-generated content; (6) respect for rights; and (7) data mining.

Interviewing children with acquired brain injury (ABI).

Research into the lives of children with acquired brain injury (ABI) often neglects to incorporate children as participants, preferring to obtain the opinions of the adult carer (e.g. McKinlay et al., 2002). There has been a concerted attempt to move away from this position by those working in children’s research with current etiquette highlighting the inclusion of children and the use of a child-friendly methodology (Chappell, 2000). Children with disabilities can represent a challenge to the qualitative researcher due to the combination of maintaining the child’s attention and the demands placed on them by their disability. The focus of this article is to discuss possible impediments to interviewing children with acquired brain injury (ABI) and provide an insight into how the qualitative researcher may address these.

Recruitment bias and clinical characterstics of participants with severe cerebral palsy in a cross-sectional survey

Aim.  This article is a report of recruitment bias in a sample of 5–25-year-old patients with severe cerebral palsy.

Background.  The way in which study participants are recruited into research can be a source of bias.

Method.  A cross-sectional survey of 5–25-year-old patients with severe cerebral palsy using standardized questionnaires with parents/carers was undertaken in 2007/2008. A case register was used as the sampling frame, and 260 families were approached: 178/260 (68%) responded and 82/260 families never replied (non-respondents). Among responders: 127/178 (71%) opted in to the study, but only 123/127 were assessed, and 82/178 were opted out (or refused). Multivariable logistic regression giving odds ratios was used to study the association between participant characteristics and study outcomes (responders vs. non-responders; opting in vs. opting out; assessed vs. eligible, but not assessed).

Results.  Responders (compared with non-responders) were significantly more likely to have a family member with cerebral palsy who was male and resident in more affluent areas. Families who opted in (compared with those opting out and refusing) were more likely to have a family member with cerebral palsy and intellectual impairment and to reside in certain geographical areas. Families who were actually assessed (compared with all eligible, but not assessed) were more likely to have a family member with cerebral palsy and intellectual impairment.

Conclusion.  Several sources of bias were identified during recruitment for this study. This has implications for the interpretation and conclusions of surveys of people with disabilities and complex needs.

Secondary Outcomes in a Clinical Trial of Carotenoids with Coantioxidants versus Placebo in Early Age-Related Macular Degeneration

Purpose: To report the secondary outcomes in the Carotenoids with Coantioxidants in Age-Related Maculopathy trial.

Design: Randomized double-masked placebo-controlled clinical trial (registered as ISRCTN 94557601).

Participants: Participants included 433 adults 55 years of age or older with early age-related macular degeneration (AMD) in 1 eye and late-stage disease in the fellow eye (group 1) or early AMD in both eyes (group 2).

Intervention: An oral preparation containing lutein (L), zeaxanthin (Z), vitamin C, vitamin E, copper, and zinc or placebo. Best-corrected visual acuity (BCVA), contrast sensitivity (CS), Raman spectroscopy, stereoscopic colour fundus photography, and serum sampling were performed every 6 months with a minimum follow-up time of 12 months.

Main Outcome Measures: Secondary outcomes included differences in BCVA (at 24 and 36 months), CS, Raman counts, serum antioxidant levels, and progression along the AMD severity scale (at 12, 24, and 36 months).

Results: The differential between active and placebo groups increased steadily, with average BCVA in the former being approximately 4.8 letters better than the latter for those who had 36 months of follow-up, and this difference was statistically significant (P = 0.04). In the longitudinal analysis, for a 1-log-unit increase in serum L, visual acuity was better by 1.4 letters (95% confidence interval, 0.3-2.5; P = 0.01), and a slower progression along a morphologic severity scale (P = 0.014) was observed.

Conclusions: Functional and morphologic benefits were observed in key secondary outcomes after supplementation with L, Z, and coantioxidants in persons with early AMD.

Financial Disclosure(s): The author(s) have no proprietary or commercial interest in any materials discussed in this article. © 2012 American Academy of Ophthalmology.

Combating the mental health stigma with nostalgia

We report research implicating nostalgia as an intrapersonal means of warding off the stigmatization of persons with mental illness. We hypothesized and found that nostalgia about an encounter with a person with mental illness improves attitudes toward the mentally ill. In Experiment 1, undergraduates who recalled an encounter with a mentally ill person while focusing on central (vs. peripheral) features of the nostalgia prototype reported a more positive outgroup attitude. This beneficial effect of nostalgia was mediated by greater inclusion of the outgroup in the self (IOGS). In Experiment 2, undergraduates who recalled a nostalgic (vs. ordinary) interaction with a mentally ill person subsequently showed a more positive outgroup attitude. Results supported a serial mediation model whereby nostalgia increased social connectedness, which predicted greater IOGS and outgroup trust. IOGS and outgroup trust, in turn, predicted more positive outgroup attitudes. We ruled out alternative explanations for the results (i.e., mood, perceived positivity, and typicality of the recalled outgroup member). The findings speak to the intricate psychological processes underlying the prejudice-reduction function of nostalgia and their interventional potential. Copyright © 2013 John Wiley & Sons, Ltd.