Improving allied health professionals' research implementation behaviours for children with cerebral palsy: protocol for a before-after study

BACKGROUND: Cerebral palsy is a permanent disorder of posture and movement caused by disturbances in the developing brain. It affects approximately 1 in every 500 children in developed countries and is the most common form of childhood physical disability. People with cerebral palsy may also have problems with speech, vision and hearing, intellectual difficulties and epilepsy. Health and therapy services are frequently required throughout life, and this care should be effective and evidence informed; however, accessing and adopting new research findings into day-to-day clinical practice is often delayed.

METHODS/DESIGN: This 3-year study employs a before and after design to evaluate if a multi-strategy intervention can improve research implementation among allied health professionals (AHPs) who work with children and young people with cerebral palsy and to establish if children's health outcomes can be improved by routine clinical assessment. The intervention comprises (1) knowledge brokering with AHPs, (2) access to an online research evidence library, (3) provision of negotiated evidence-based training and education, and (4) routine use of evidence-based measures with children and young people aged 3-18 years with cerebral palsy. The study is being implemented in four organisations, with a fifth organisation acting as a comparison site, across four Australian states. Effectiveness will be assessed using questionnaires completed by AHPs at baseline, 6, 12 and 24 months, and by monitoring the extent of use of evidence-based measures. Children's health outcomes will be evaluated by longitudinal analyses.

DISCUSSION: Government, policy makers and service providers all seek evidence-based information to support decision-making about how to distribute scarce resources, and families are seeking information to support intervention choices. This study will provide knowledge about what constitutes an efficient, evidence-informed service and which allied health interventions are implemented for children with cerebral palsy.

TRIAL REGISTRATION: Trial is not a controlled healthcare intervention and is not registered.

Teaching family carers about home based palliative care: Final results from a group education program

Without the considerable support provided by family carers, many patients receiving palliative care would be unable to remain at home. However, family carers typically lack the required information and skills to prepare them for such a role. Pilot work has demonstrated that group education programs for family carers can be readily developed; they are feasible, accessible, and useful. This project sought to build on our pilot research to further examine the effectiveness of a group education program by evaluating the outcomes with a larger number of participants. The program aimed to prepare primary family carers for the role of supporting a relative with advanced, noncurative cancer at home. The psycho-educational program consisted of three consecutive weekly sessions presented in a group format, conducted at six home-based palliative care services across metropolitan and regional Victoria, Australia. The following dependent variables were measured at three time points: carer competence, preparedness, rewards, and information needs. The three time points were: commencement of the program (Time 1), upon completion (Time 2), and two weeks later (Time 3). A total of 156 participants (including the pilot phase) completed Time 1 questionnaires and 96 completed all three time periods (62%). Between Time 1 and Time 2, the intervention had a statistically significant positive effect on preparedness, competence, rewards, and having informational needs met. Outcomes were maintained at Time 3. There was no difference in the effectiveness of the intervention for participants in regional areas compared to participants in metropolitan areas.

This study demonstrated that a group education program to prepare family carers for the role of supporting a dying relative at home was effective. Implications for further research and practice are outlined.

New Technology and Researchers’ Access to Court and Tribunal Information: the need for European analysis

We discuss the limitations and rights which may affect the researcher’s access to and use of digital, court and administrative tribunal based information. We suggest that there is a need for a European-wide investigation of the legal framework which affects the researcher who might wish to utilise this form of information. A European-wide context is required because much of the relevant law is European rather than national, but much of the constraints are cultural. It is our thesis that research improves understanding and then improves practice as that understanding becomes part of public debate. If it is difficult to undertake research, then public debate about the court system – its effectiveness, its biases, its strengths – becomes constrained. Access to court records is currently determined on a discretionary basis or on the basis of interpretation of rules of the court where these are challenged in legal proceedings. Anecdotal evidence would suggest that there are significant variations in the extent to which court documents such as pleadings, transcripts, affidavits etc are made generally accessible under court rules or as a result of litigation in different jurisdictions or, indeed, in different courts in the same jurisdiction. Such a lack of clarity can only encourage a chilling of what might otherwise be valuable research. Courts are not, of course, democratic bodies. However, they are part of a democratic system and should, we suggest – both for the public benefit and for their proper operation – be accessible and criticisable by the independent researcher. The extent to which the independent researcher is enabled access is the subject of this article. The rights of access for researchers and the public have been examined in other common law countries but not, to date, in the UK or Europe.

Comparing long-term placements for young children in care: The care pathways and outcomes study - Northern Ireland

When deciding on a long-term placement for a young child in care, a key challenge is to identify one that will enable children to achieve their full potential and enhance their health and wellbeing in the longer term. However, there is a dearth of research evidence that compares how children fare in the longer term across placement options.

The Care Pathways and Outcomes study is one of a small number of studies internationally that takes this form of longitudinal comparative approach. Since 2000, it has been tracking the placement profile for a population of children who were under the age of five and in care in Northern Ireland on a particular census day, and gathering comparative data on how the children and their parents/carers have been coping across the different types of placements provided.

This book reports on the most recent phase of the study, which involved interviews with a sub-group of the children (aged 9 to 14) and their parents/carers in adoption, foster care, kinship care, on residence order, and living with birth parents. Similarities and differences were explored between placement types, in terms of children’s attachment, self-concept, education, health and behaviour, their carers’ stress, social support, family communication, and contact with birth families.

This contemporary study contributes to evidence-based practice and provides a research base for decision-making throughout the UK.

A cluster randomised controlled trial and process evaluation of the early years DELTA parenting programme

This paper reports the results from a cluster randomised controlled trial (RCT) and process evaluation of the Early Years DELTA Parenting Programme; a six-week, group based intervention. The evaluation was part funded by DELTA and involved 23 primary schools and 334 parents. Results showed that intervention parents reported increased parental self-efficacy in relation to: knowledge of their child’s development and needs; self-acceptance as a good parent, and; disciplining and setting boundaries. No change was observed in the remaining outcome areas. Parent interviews indicated a high level of programme satisfaction and the main benefits reflected the outcomes measured by the RCT. This small, robust evaluation is commensurate with other similar research demonstrating the effectiveness and reach of short-term, group-based parenting programmes.

Integrative analysis of chemo-transcriptomic profiles for drug-feature specific gene expression signatures

One of the major challenges in systems biology is to understand the complex responses of a biological system to external perturbations or internal signalling depending on its biological conditions. Genome-wide transcriptomic profiling of cellular systems under various chemical perturbations allows the manifestation of certain features of the chemicals through their transcriptomic expression profiles. The insights obtained may help to establish the connections between human diseases, associated genes and therapeutic drugs. The main objective of this study was to systematically analyse cellular gene expression data under various drug treatments to elucidate drug-feature specific transcriptomic signatures. We first extracted drug-related information (drug features) from the collected textual description of DrugBank entries using text-mining techniques. A novel statistical method employing orthogonal least square learning was proposed to obtain drug-feature-specific signatures by integrating gene expression with DrugBank data. To obtain robust signatures from noisy input datasets, a stringent ensemble approach was applied with the combination of three techniques: resampling, leave-one-out cross validation, and aggregation. The validation experiments showed that the proposed method has the capacity of extracting biologically meaningful drug-feature-specific gene expression signatures. It was also shown that most of signature genes are connected with common hub genes by regulatory network analysis. The common hub genes were further shown to be related to general drug metabolism by Gene Ontology analysis. Each set of genes has relatively few interactions with other sets, indicating the modular nature of each signature and its drug-feature-specificity. Based on Gene Ontology analysis, we also found that each set of drug feature (DF)-specific genes were indeed enriched in biological processes related to the drug feature. The results of these experiments demonstrated the pot- ntial of the method for predicting certain features of new drugs using their transcriptomic profiles, providing a useful methodological framework and a valuable resource for drug development and characterization.

Socio-economic status and lifestyle factors are associated with achalasia risk: a population-based case-control study.

AIM: To evaluate the association between various lifestyle factors and achalasia risk.

METHODS: A population-based case-control study was conducted in Northern Ireland, including n= 151 achalasia cases and n = 117 age- and sex-matched controls. Lifestyle factors were assessed via a face-to-face structured interview. The association between achalasia and lifestyle factors was assessed by unconditional logistic regression, to produce odds ratios (OR) and 95% confidence interval (CI).

RESULTS: Individuals who had low-class occupations were at the highest risk of achalasia (OR = 1.88, 95%CI: 1.02-3.45), inferring that high-class occupation holders have a reduced risk of achalasia. A history of foreign travel, a lifestyle factor linked to upper socio-economic class, was also associated with a reduced risk of achalasia (OR = 0.59, 95%CI: 0.35-0.99). Smoking and alcohol consumption carried significantly reduced risks of achalasia, even after adjustment for socio-economic status. The presence of pets in the house was associated with a two-fold increased risk of achalasia (OR = 2.00, 95%CI: 1.17-3.42). No childhood household factors were associated with achalasia risk.

CONCLUSION: Achalasia is a disease of inequality, and individuals from low socio-economic backgrounds are at highest risk. This does not appear to be due to corresponding alcohol and smoking behaviours. An observed positive association between pet ownership and achalasia risk suggests an interaction between endotoxin and viral infection exposure in achalasia aetiology.

A New Model for Automated Examination Timetabling

Automated examination timetabling has been addressed by a wide variety of methodologies and techniques over the last ten years or so. Many of the methods in this broad range of approaches have been evaluated on a collection of benchmark instances provided at the University of Toronto in 1996. Whilst the existence of these datasets has provided an invaluable resource for research into examination timetabling, the instances have significant limitations in terms of their relevance to real-world examination timetabling in modern universities. This paper presents a detailed model which draws upon experiences of implementing examination timetabling systems in universities in Europe, Australasia and America. This model represents the problem that was presented in the 2nd International Timetabling Competition (ITC2007). In presenting this detailed new model, this paper describes the examination timetabling track introduced as part of the competition. In addition to the model, the datasets used in the competition are also based on current real-world instances introduced by EventMAP Limited. It is hoped that the interest generated as part of the competition will lead to the development, investigation and application of a host of novel and exciting techniques to address this important real-world search domain. Moreover, the motivating goal of this paper is to close the currently existing gap between theory and practice in examination timetabling by presenting the research community with a rigorous model which represents the complexity of the real-world situation. In this paper we describe the model and its motivations, followed by a full formal definition.

Detecting Deception in Movement: The Case of the Side-Step in Rugby

Although coordinated patterns of body movement can be used to communicate action intention, they can also be used to deceive. Often known as deceptive movements, these unpredictable patterns of body movement can give a competitive advantage to an attacker when trying to outwit a defender. In this particular study, we immersed novice and expert rugby players in an interactive virtual rugby environment to understand how the dynamics of deceptive body movement influence a defending player’s decisions about how and when to act. When asked to judge final running direction, expert players who were found to tune into prospective tau-based information specified in the dynamics of ‘honest’ movement signals (Centre of Mass), performed significantly better than novices who tuned into the dynamics of ‘deceptive’ movement signals (upper trunk yaw and out-foot placement) (p<.001). These findings were further corroborated in a second experiment where players were able to move as if to intercept or ‘tackle’ the virtual attacker. An analysis of action responses showed that experts waited significantly longer before initiating movement (p<.001). By waiting longer and picking up more information that would inform about future running direction these experts made significantly fewer errors (p<.05). In this paper we not only present a mathematical model that describes how deception in body-based movement is detected, but we also show how perceptual expertise is manifested in action expertise. We conclude that being able to tune into the ‘honest’ information specifying true running action intention gives a strong competitive advantage.

Experiences of carers supporting dying renal patients managed without dialysis

Aim: To explore the impact of being a family carer to patients with stage 5 chronic kidney disease managed without dialysis.
Background: Increasing numbers of patients with renal disease worldwide are making the decision not to embark on dialysis. This group has significant physical and psychological symptom burdens similar to or greater than those in advanced cancer patients. Little is known about the impact on family carers.
Design: Exploratory, qualitative design.
Methods: The study was undertaken with 19 carers caring for patients managed in a Renal Supportive Care Service in the UK between 2006–2008. Sixty-one semi-structured interviews and detailed field notes inform the analysis.
Findings: ‘Caring from diagnosis to death’ was the overarching theme illustrated by three sub-themes: (i) Caregiver's plight – making sense of the disease and potential deterioration; (ii) Having to care indefinitely; and (iii) Avoiding talk of death. ‘Caring from diagnosis to death’ coincides with an original concept analysis of renal supportive care, which is considered an adjunct to the management of patients with renal disease at all stages of their illness.
Conclusion: There is a clear need for further research internationally and theory-based nursing interventions to support carers of patients managed without dialysis. The development of a holistic, integrated care pathway based on carer perspectives, which includes identification of information needs related to original diagnosis, associated comorbidities, treatment options, prognosis, and assistance in developing strategies to manage communication with patients as the end of life approaches, is required.

USING ‘NUTRITIONAL NARRATIVE’ AND FOCUS GROUPS TO UNDERSTAND HOW NUTRITIONAL CARE CAN BETTER PRIORITISED FOR OLDER PEOPLE IN HOSPITAL SETTINGS

Introduction: Poor nutritional status among older people is well documented with 40% of older people reported as malnourished on hospital admission. Poor nutrition contributes to increased infection, poorer patient outcomes and death and longer hospital stays. In this study, we assessed the ‘nutrition narrative’ from older hospital patients together with nutrition knowledge among nursing and medical staff and students.
Methods: The study used a convenience sample of older people (30, mean age 82 years) in two large geographically separate city hospitals. Patients mentally alert and consenting, gave a recorded ‘nutrition narrative’ to get a sense of how they felt their nutritional needs were being met in hospital. Main themes were identified by grounded analysis framework. Focus groups were recruited from medical/nursing teachers and students to assess their working knowledge of nutrition and the nutritional needs of the older patient group.
Results: Analysis of the ‘nutrition narrative’ suggested several themes (i) staff should listen to patients' needs/wishes in discussion with themselves and family members (ii) staff should continue to encourage and progress a positive eating experience (iii) staff should monitor food eaten/or not eaten and increase regular monitoring of weight. The focus groups with medical and nursing students suggested a limited knowledge about nutritional care of older people and little understanding about roles or cross-talk about nutrition across the multidisciplinary groups.
Conclusions: The ‘nutrition narrative’ themes suggested that the nutritional experience of older people in hospital can and must be improved. Nursing and medical staff providing medical and nursing care need better basic knowledge of nutrition and nutritional assessment, an improved understanding of the roles of the various multidisciplinary staff and of hospital catering pathways. Care professionals need to prioritise patient nutrition much more highly and recognise nutritional care as integral to patient healing and recovery

Invited review - genetic and epigenetic factors influencing CKD

Chronic kidney disease (CKD) has become a serious public health problem because of its associated morbidity, premature mortality and attendant healthcare costs. The rising number of persons with CKD is linked with ageing population structure and an increased prevalence of diabetes, hypertension and obesity. There is an inherited risk associated with developing CKD as evidenced by familial clustering and differing prevalence rates across ethnic groups. Earlier studies to determine the inherited risk factors for CKD rarely identified genetic variants that were robustly replicated. However, improvements in genotyping technologies and analytical methods are now helping to identify promising genetic loci aided by international collaboration and multi-consortia efforts. More recently, epigenetic modifications have been proposed to play a role in both the inherited susceptibility to CKD and, importantly, to explain how the environment dynamically interacts with the genome to alter an individual's disease risk. Genome-wide, epigenome-wide and whole transcriptome studies have been performed and optimal approaches for integrative analysis are being developed. This review summarises recent research and the current status of genetic and epigenetic risk factors influencing CKD using population-based information.

Long-term health-related quality of life of prostate cancer survivors varies by primary treatment. Results from the PiCTure (Prostate Cancer Treatment, your experience) study

PURPOSE: Men are living longer with prostate cancer. In a two-country study, we investigated the health-related quality of life (HRQoL) of prostate cancer survivors up to 18 years post-diagnosis.

METHODS: Postal questionnaires were administered in 2012 to 6559 prostate cancer (ICD10 C61) survivors 2-18 years post-diagnosis, identified through population-based cancer registries in Ireland. HRQoL was measured using QLQ-C30 and QLQ-PR25. HRQoL, functional and symptom scores were compared by primary treatment(s) using multiple linear regression.

RESULTS: Fifty-four percent responded (n = 3348). After controlling for socio-demographic and clinical factors, global HRQoL varied significantly by primary treatment (p < 0.001); compared to radical prostatectomy (RP), survivors who received androgen deprivation therapy alone (ADT; p < 0.001) or external beam radiotherapy (EBRT) without concurrent ADT (p = 0.001) had significantly lower global HRQoL. The global HRQoL of men who received brachytherapy (p = 0.157), EBRT with concurrent ADT (p = 0.940) or active surveillance/watchful waiting (p = 0.388) was not significantly different from men treated with RP. There were statistically and clinically significant differences in general (fatigue, pain, dyspnoea, appetite loss, constipation, diarrhoea, financial difficulties) and disease-specific symptoms (sexual, urinary, bowel, ADT) by primary treatment. Fatigue and insomnia scores were high for survivors in all treatment groups.

CONCLUSIONS: Prostate cancer survivors' long-term HRQoL varied with primary treatment.

IMPLICATIONS OF CANCER SURVIVORS: Population-based information regarding statistically and clinically significant treatment effects on long-term global HRQoL, symptom burden and functionality should be provided during treatment decision-making. Screening for symptoms and utilising interventions during long-term follow-up may improve survivors' HRQoL.

Developing an information booklet to meet the needs of intensive care patients and relatives

Changes in the economic climate and the delivery of health care require that pre-operative information programmes are effective and efficiently implemented. In order to be effective the pre-operative programme must meet the information needs of intensive care unit (ICU) patients and their relatives. Efficiency can be achieved through a structured pre-operative programme which provides a framework for teaching. The need to develop an ICU information booklet in a large teaching hospital in Northern Ireland has become essential to provide relevant information and improve the quality of service for patients and relatives, as set out in the White Paper, ‘Working for Patients’, (DoH, 1989). The first step in establishing a patient education programme was to ascertain patients' and relatives' informational needs. A ‘needs assessment’ identified the pre-operative information needs of ICU patients and their relatives (McGaughey, 1994) and the findings were used to plan and publish an information booklet. The ICU booklet provides a structure for pre-operative visits to ensure that patients and relatives information needs are met.