UK general practice service delivery research priorities: an adapted James Lind Alliance approach.

BACKGROUND: General practice is in a state of crisis in a number of countries. In the UK, a range of measures have been introduced to address the situation, including innovations such as practice networks, multidisciplinary roles, and digital technologies. However, identifying what still needs fixing could benefit from more evidence, particularly in relation to day-to-day service delivery. AIM: To identify the general practice workforce's top 10 research priorities to improve service delivery. DESIGN AND SETTING: This priority-setting study used an adapted James Lind Alliance methodology and involved staff working in general practice across the UK. METHOD: The study comprised four phases: an online qualitative survey issued to the general practice workforce (clinical and non-clinical groups); thematic analysis of free-text responses; generation of indicative research questions; and the undertaking of ranking exercises with responders of the original survey. An online workshop was held with participants at the final stage of prioritisation. RESULTS: In total, 93 staff completed a survey in Phase 1, from which 20 themes were categorised and developed into research questions. Twenty- two staff responded to the first ranking activity and 11 took part in a second ranking activity to discuss themes that had a tied vote. The final top 10 research priorities were: volume of work; patient behaviour; consultations; employment pay and conditions; workload dumping and care of patients on waiting list; funding; overwhelming pressure; patient health education; complex patient needs; and interfaces with secondary care. However, there was no clear ranking of these 10 priorities; instead, they carried equal weight and were closely interconnected. CONCLUSION: Applying a marginal-gains approach, by seeking to explore all 10 priorities simultaneously as opposed to concentrating on one area at a time, may provide more noticeable improvements overall. Systems-based approaches that take account of the marked role that context has may be a particularly useful lens for future research.

Parenting roles for young people with attention-deficit/hyperactivity disorder transitioning to adult services.

AIM: To inform transitions from child to adult health services, we explored the work and roles parents take in the care of young people with attention-deficit/hyperactivity disorder (ADHD) aged 14 to 25 years old. METHOD: Using framework thematic analysis, we analysed data collected from 28 semi-structured interviews with parents of young people with ADHD to generate a typology and triangulated it against findings from 64 interviews with young people with ADHD. The interviews were carried out as part of a three-strand, interactive mixed-method study. RESULTS: An entourage typology of three parent roles was identified. Parents moved between 'manager' and 'roadie' roles as their child gradually matured. A 'superfan' role was identified which supported young people's positive self-image but may impede withdrawal from the 'manager' role. Continued parental involvement into adulthood reflected a need to maintain the balance of resources required to maintain quality of life for the whole family. INTERPRETATION: This is the first study to explore parental roles in the health care of young people with ADHD. Parents will vary in their capacity to fulfil the identified roles and step back their care as their children reach adulthood. The findings can inform intervention development to support families and transition between services. WHAT THIS PAPER ADDS: Parents move from a 'manager' to 'roadie' role as young people mature. A 'superfan' role supports positive self-image and directed health care work. Continued involvement reflects parental responsibility to juggle wider family needs and resources. Parents differ in capacity to fulfil and move between these roles.

Young people with attention deficit hyperactivity disorder in transition from child to adult services: a qualitative study of the experiences of general practitioners in the UK.

BACKGROUND: Many young people with Attention Deficit Hyperactivity Disorder (ADHD) have impairing symptoms that persist into adulthood, yet only a minority experience continuity of care into adult life. Despite growing emphasis on the primary care role in ADHD management in NICE ADHD and transition guidance, little is known about GPs' perspectives, which could hamper efforts to improve outcomes for young people leaving children's services. This study aimed to understand GPs' experiences of involvement with this group and explore their views on the roles and responsibilities of primary and secondary care in transition, to inform recommendations for policy and practice. METHOD: Qualitative interview study with GPs across the UK. Semi-structured telephone interviews were carried out with 14 GPs recruited through a linked mapping study, social media, and snowballing; data were analysed using thematic analysis. RESULTS: In the absence of a smooth transition from child to adult services, many GPs became involved 'by default'. GPs reacted by trying to identify suitable specialist services, and were faced with the decision of whether to continue ADHD prescribing. Such decisions were strongly influenced by perceptions that prescribing carried risks, and concerns over responsibility, particularly where specialist services were lacking. Participants described variation in service availability, and some highlighted tensions around how shared care works in practice. CONCLUSION: Implementation of NICE guidance is highly variable, with implications for GPs and patients. Risk and responsibility for primary care ADHD prescribing are central concerns that need to be addressed, as is the inclusion of GPs in a planned transition process.

Developing a Training for Certified Nursing Assistants to Recognize, Communicate, and Document Discomfort in Residents With Dementia.

Nursing home residents with advanced dementia experience significant symptom burden and may be unable to articulate their needs. Observational tools, such as the Pain Assessment in Advanced Dementia (PAINAD) scale, are available to evaluate changes in behavior that may signify discomfort or pain. Studies proposing a short and effective curriculum, primarily for certified nursing assistants (CNAs) on how to use and incorporate the PAINAD in daily patient care, are scarce. This performance improvement project involves the design and implementation of a training curriculum for CNAs for using the PAINAD and discusses barriers to be considered for further projects. Certified nursing assistant perceptions of their experience with the training and the use of the tool were also assessed with a brief evaluation. Seventy-three initial PAINAD forms were completed along with 52 follow-up PAINAD forms. A paired t test (N = 52) showed a significant decrease in the PAINAD scores from initial (mean, 6.06) to follow-up (mean, 1.85) (P < .001), suggesting a reduction of patient discomfort. The process of collecting and examining these data was meant to reinforce the identification and reduction of behavioral distress through the application of this tool. The training was perceived as effective and the tool as easy to use, indicating it can be incorporated into daily care responsibilities of CNAs.

Autism and primary care dentistry: parents' experiences of taking children with autism or working diagnosis of autism for dental examinations.

BACKGROUND: Accessing and receiving preventative dental treatment can be difficult for children with autism due to sensory processing disorders and/or challenging behaviours coupled with a reported reluctance by dentists to treat these children. AIM: To gather dental experiences of UK parents of children with autism or working diagnosis of autism and explore how they feel primary care dental services can be improved. DESIGN: A total of 17 parents of children with a diagnosis or working diagnosis of autism took part in semi-structured interviews. Data were analysed thematically. RESULTS: Key themes identified were flexibility of the dental team and environment, confidence of the parents to advocate for their children's needs, continuity of services and clear referral pathways to specialist services. Cross-cutting all themes was the value of clear communication. The experiences provide greater understanding of issues such as hyper-empathy, the dental chair, challenges of the waiting room, perceived medical authority, and the importance of continuation of care. CONCLUSION: In line with previous research about the importance of family-centred care, a strong relationship between parents and the whole dental team is essential for children with autism to access dental examinations and have satisfactory experience of care.

Sleep positioning systems for children with cerebral palsy.

BACKGROUND: Sleep positioning systems can be prescribed for children with cerebral palsy to help reduce or prevent hip migration, provide comfort to ease pain and/or improve sleep. As sleep disturbance is common in children with developmental disabilities, with impact on their carers' sleep, and as sleep positioning systems can be expensive, guidance is needed to support decisions as to their use. OBJECTIVES: To determine whether commercially-available sleep positioning systems, compared with usual care, reduce or prevent hip migration in children with cerebral palsy. Any negative effect of sleep positioning systems on hip migration will be considered within this objective.Secondary objectives were to determine the effect of sleep positioning systems on: (1) number or frequency of hip problems; (2) sleep patterns and quality; (3) quality of life of the child and family; (4) pain; and (5) physical functioning. We also sought to identify any adverse effects from using sleep positioning systems. SEARCH METHODS: In December 2014, we searched CENTRAL, Ovid MEDLINE, Embase, and 13 other databases. We also searched two trials registers. We applied no restrictions on date of publication, language, publication status or study design. We checked references and contacted manufacturers and authors for potentially relevant literature, and searched the internet using Google. SELECTION CRITERIA: We included all randomised controlled trials (RCTs) evaluating whole body sleep positioning systems for children and adolescents (up to 18 years of age) with cerebral palsy. DATA COLLECTION AND ANALYSIS: Two review authors independently screened reports retrieved from the search against pre-determined inclusion criteria and assessed the quality of eligible studies.Members of the public (parent carers of children with neurodisability) contributed to this review by suggesting the topic, refining the research objectives, interpreting the findings, and reviewing the plain language summary. MAIN RESULTS: We did not identify any randomised controlled trials that evaluated the effectiveness of sleep positioning systems on hip migration.We did find two randomised cross-over trials that met the inclusion criteria in respect of secondary objectives relating to sleep quality and pain. Neither study reported any important difference between sleeping in sleep positioning systems and not for sleep patterns or sleep quality (two studies, 21 children, very low quality evidence) and pain (one study, 11 children, very low quality evidence). These were small studies with established users of sleep positioning systems and were judged to have high risk of bias.We found no eligible trials that explored the other secondary objectives (number or frequency of hip problems, quality of life of the child and family, physical functioning, and adverse effects). AUTHORS' CONCLUSIONS: We found no randomised trials that evaluated the effectiveness of sleep positioning systems to reduce or prevent hip migration in children with cerebral palsy. Nor did we find any randomised trials that evaluated the effect of sleep positioning systems on the number or frequency of hip problems, quality of life of the child and family or on physical functioning.Limited data from two randomised trials, which evaluated the effectiveness of sleep positioning systems on sleep quality and pain for children with cerebral palsy, showed no significant differences in these aspects of health when children were using and not using a sleep positioning system.In order to inform clinical decision-making and the prescription of sleep positioning systems, more rigorous research is needed to determine effectiveness, cost-effectiveness, and the likelihood of adverse effects.

Projecting future drug expenditures--2009.

PURPOSE: Drug expenditure trends in 2007 and 2008, projected drug expenditures for 2009, and factors likely to influence drug expenditures are discussed. SUMMARY: Various factors are likely to influence drug expenditures in 2009, including drugs in development, the diffusion of new drugs, drug safety concerns, generic drugs, Medicare Part D, and changes in the drug supply chain. The increasing availability of important generic drugs and drug safety concerns continue to moderate growth in drug expenditures. The drug supply chain remains dynamic and may influence drug expenditures, particularly in specialized therapeutic areas. Initial data suggest that the Medicare Part D benefit has influenced drug expenditures, but the ultimate impact of the benefit on drug expenditures remains unclear. From 2006 to 2007, total U.S. drug expenditures increased by 4.0%, with total spending rising from $276 billion to $287 billion. Drug expenditures in clinics continue to grow more rapidly than in other settings, with a 9.9% increase from 2006 to 2007. Hospital drug expenditures increased at a moderate rate of only 1.6% from 2006 to 2007; through the first nine months of 2008, hospital drug expenditures increased by only 2.8% compared with the same period in 2007. CONCLUSION: In 2009, we project a 0-2% increase in drug expenditures in outpatient settings, a 1-3% increase in expenditures for clinic-administered drugs, and a 1-3% increase in hospital drug expenditures.

Case Report: Viral Infectious Pancreatic Necrosis in Farmed Rainbow Trout from Mexico.

This case report provides pathologic and confirmatory diagnostic documentation of the first reported clinical epizootic of infectious pancreatic necrosis (IPN) in farmed rainbow trout Oncorhynchus mykiss from central Mexico. Both the gross and microscopic pathology were consistent with IPN. A virus was isolated in cell culture with the cytopathic effect typical of the IPN virus (IPNV). Positive identification as IPNV was achieved by means of an IPNV-specific indirect fluorescent antibody test and reverse transcription-polymerase chain reaction. Further genotyping identified this isolate as the Buhl strain of IPNV, which is a member of the West Buxton (A1) serotype of aquatic birnavirus serogroup A.

Characterization of snakehead rhabdovirus infection in zebrafish (Danio rerio).

The zebrafish, Danio rerio, has become recognized as a valuable model for the study of development, genetics, and toxicology. Recently, the zebrafish has been recognized as a useful model for infectious disease and immunity. In this study, the pathogenesis and antiviral immune response of zebrafish to experimental snakehead rhabdovirus (SHRV) infection was characterized. Zebrafish 24 h postfertilization to 30 days postfertilization were susceptible to infection by immersion in 10(6) 50% tissue culture infective doses (TCID50) of SHRV/ml, and adult zebrafish were susceptible to infection by intraperitoneal (i.p.) injection of 10(5) TCID50 of SHRV/ml. Mortalities exceeded 40% in infected fish, and clinical presentation of infection included petechial hemorrhaging, redness of the abdomen, and erratic swim behavior. Virus reisolation and reverse transcription-PCR analysis of the viral nucleocapsid gene confirmed the presence of SHRV. Histological sections of moribund embryonic and juvenile fish revealed necrosis of the pharyngeal epithelium and liver, in addition to congestion of the swim bladder by cell debris. Histopathology in adult fish injected i.p. was confined to the site of injection. The antiviral response in zebrafish was monitored by quantitative real-time PCR analysis of zebrafish interferon (IFN) and Mx expression. IFN and Mx levels were elevated in zebrafish exposed to SHRV, although expression and intensity differed with age and route of infection. This study is the first to examine the pathogenesis of SHRV infection in zebrafish. Furthermore, this study is the first to describe experimental infection of zebrafish embryos with a viral pathogen, which will be important for future experiments involving targeted gene disruption and forward genetic screens.

Development of a respiratory burst assay using zebrafish kidneys and embryos.

The innate immune response constitutes the first line of defense against invading pathogens and consists of a variety of immune defense mechanisms including the respiratory burst of phagocytes. Respiratory burst can be used as a reliable measure of the immune response of a host, and numerous assays have been developed to measure this response in a variety of mammal and fish species. Phagocytes, like granulocytes and macrophages, that are derived from different tissues, or grown in cell culture, have been employed in a range of assay formats employing a variety of detection methods. The small size of the zebrafish has prevented the large-scale extraction of these cells for respiratory burst assays in the zebrafish. In this work, we describe a respiratory burst assay developed for the zebrafish using intact kidneys and embryos as sources of phagocytes. Phorbol myristate acetate (PMA)-inducible reactive oxygen species (ROS) were detected following the oxidation of a non-fluorescent dye 2',7'-dihydrodichlorofluorescein diacetate (H2DCFDA) to dichlorofluorescein (DCF), a fluorescent product. Embryos from 1 day post-fertilization until 5 days post-fertilization (dpf) were employed in this assay. Abrogation of H2DCFDA oxidation by the protein kinase C (PKC) inhibitor bisindolylmaleimide I (BisI) indicated a reduction in the respiratory burst. Fluorescence from the PMA-induced respiratory burst in kidneys and embryos was significantly elevated above DMSO-treated controls, while preincubation with BisI inhibited the increase in fluorescence. Colocalization of cell-associated chloromethyl-dihydrodichlorofluorescein diacetate (CM-H2DCFDA) with the phagocyte-selective dye neutral red is consistent with the observation that macrophages and granulocytes are the ROS-producing cells in the zebrafish.

Case Report: Viral Infectious Pancreatic Necrosis in Farmed Rainbow Trout from Mexico.

This case report provides pathologic and confirmatory diagnostic documentation of the first reported clinical epizootic of infectious pancreatic necrosis (IPN) in farmed rainbow trout Oncorhynchus mykiss from central Mexico. Both the gross and microscopic pathology were consistent with IPN. A virus was isolated in cell culture with the cytopathic effect typical of the IPN virus (IPNV). Positive identification as IPNV was achieved by means of an IPNV-specific indirect fluorescent antibody test and reverse transcription-polymerase chain reaction. Further genotyping identified this isolate as the Buhl strain of IPNV, which is a member of the West Buxton (A1) serotype of aquatic birnavirus serogroup A.