Getting palliative medications right across the contexts of homes, hospitals and hospices: protocol to synthesise scoping review and ethnographic methods in an activity theory analysis.

INTRODUCTION: Prescribing and medication use in palliative care is a multistep process. It requires systems coordination and is enacted through activities of patients, informal carers and professionals. This study compares practice to idealised descriptions of what should happen; identifying when, how and why process disturbances impact on quality and safety. Our objectives are to:Document an intended model (phase 1, scoping review).Refine the model with study of practice (phase 2, ethnography).Use the model to pinpoint 'hot' (viewed as problematic by participants) and 'cold' spots (observed as problematic by researchers) within or when patients move across three contexts-hospice, hospital and community (home).Create learning recommendations for quality and safety targeted at underlying themes and contributing factors. METHODS AND ANALYSIS: The review will scope Ovid Medline, CINAHL and Embase, Google Scholar and Images-no date limits, English language only. The Population (palliative), Concept (medication use), Context (home, hospice, hospital) framework defines inclusion/exclusion criteria. Data will be extracted to create a model illustrating how processes ideally occur, incorporating multiple steps of typical episodes of prescribing and medication use for symptom control. Direct observations, informal conversations around acts of prescribing and medication use, and semistructured interviews will be conducted with a purposive sample of patients, carers and professionals. Drawing on activity theory, we will synthesise analysis of both phases. The analysis will identify when, how and why activities affect patient safety and experience. Generating a rich multivoiced understanding of the process will help identify meaningful targets for improvement. ETHICS AND DISSEMINATION: Ethical approval granted by the Camden & Kings Cross NHS Regional Ethics Committee (21/LO/0459). A patient and public involvement (PPI) coinvestigator, a multiprofessional steering group and a PPI engagement group are working with the research team. Dissemination of findings is planned through peer-reviewed publications and a stakeholder (policymakers, commissioners, clinicians, researchers, public) report/dissemination event.

Evidence-based clinical practice guidelines on the management of pain in older people - a summary report.

OBJECTIVE: The objective of this study is to develop an update of the evidence-based guidelines for the management of pain in older people. DESIGN: Review of evidence since 2010 using a systematic and consensus approach is performed. RESULTS: Recognition of the type of pain and routine assessment of pain should inform the use of specific environmental, behavioural and pharmacological interventions. Individualised care plans and analgesic protocols for specific clinical situations, patients and health care settings can be developed from these guidelines. CONCLUSION: Management of pain must be considered as an important component of the health care provided to all people, regardless of their chronological age or severity of illness. By clearly outlining areas where evidence is not available, these guidelines may also stimulate further research. To use the recommended therapeutic approaches, clinicians must be familiar with adverse effects of treatment and the potential for drug interactions.

Understanding the Potential for Pharmacy Expertise in Palliative Care: The Value of Stakeholder Engagement in a Theoretically Driven Mapping Process for Research.

Potentially avoidable medication-related harm is an inherent risk in palliative care; medication management accounts for approximately 20% of reported serious incidents in England and Wales. Despite their expertise benefiting patient care, the routine contribution of pharmacists in addressing medication management failures is overlooked. Internationally, specialist pharmacist support for palliative care services remains under-resourced. By understanding experienced practices ('what happens in the real world') in palliative care medication management, compared with intended processes ('what happens on paper'), patient safety issues can be identified and addressed. This commentary demonstrates the value of stakeholder engagement and consultation work carried out to inform a scoping review and empirical study. Our overall goal is to improve medication safety in palliative care. Informal conversations were undertaken with carers and various specialist and non-specialist professionals, including pharmacists. Themes were mapped to five steps: decision-making, prescribing, monitoring and supply, use (administration), and stopping and disposal. A visual representation of stakeholders' understanding of intended medicines processes was produced. This work has implications for our own and others' research by highlighting where pharmacy expertise could have a significant additional impact. Evidence is needed to support best practice and implementation, particularly with regard to supporting carers in monitoring and accessing medication, and communication between health professionals across settings.

Mixed-methods study protocol: do national reporting and learning system medication incidents in palliative care reflect patient and carer concerns about medication management and safety?

INTRODUCTION: Approximately 20% of serious safety incidents involving palliative patients relate to medication. These are disproportionately reported when patients are in their usual residence when compared with hospital or hospice. While patient safety incident reporting systems can support professional learning, it is unclear whether these reports encompass patient and carer concerns with palliative medications or interpersonal safety. AIM: To explore and compare perceptions of (un)safe palliative medication management from patient, carer and professional perspectives in community, hospital and hospice settings. METHODS AND ANALYSIS: We will use an innovative mixed-methods study design combining systematic review searching techniques with cross-sectional quantitative descriptive analysis and interpretative qualitative metasynthesis to integrate three elements: (1) Scoping review: multiple database searches for empirical studies and first-hand experiences in English (no other restrictions) to establish how patients and informal carers conceptualise safety in palliative medication management. (2)Medication incidents from the England and Wales National Reporting and Learning System: identifying and characterising reports to understand professional perspectives on suboptimal palliative medication management. (3) Comparison of 1 and 2: contextualising with stakeholder perspectives. PATIENT AND PUBLIC INVOLVEMENT: Our team includes a funded patient and public involvement (PPI) collaborator, with experience of promoting patient-centred approaches in patient safety research. Funded discussion and dissemination events with PPI and healthcare (clinical and policy) professionals are planned. ETHICS AND DISSEMINATION: Prospective ethical approval granted: Cardiff University School of Medicine Research Ethics Committee (Ref 19/28). Our study will synthesise multivoiced constructions of patient safety in palliative care to identify implications for professional learning and actions that are relevant across health and social care. It will also identify changing or escalating patterns in palliative medication incidents due to the COVID-19 pandemic. Peer-reviewed publications, academic presentations, plain English summaries, press releases and social media will be used to disseminate to the public, researchers, clinicians and policy-makers.

Comparison of neonatal red cell transfusion reporting in neonatal intensive care units with blood product issue data: a validation study.

BACKGROUND: Infants in Neonatal Intensive Care Units represent a heavily transfused population, and are the focus of much research interest. Such research commonly relies on custom research databases or routinely collected data. Knowledge of the accuracy of transfusion recording in these databases is important. This study aims to assess the reporting of red blood cell transfusion neonatal intensive care unit data compared with routinely collected hospital blood bank ("Blood Watch") data. METHODS: Blood Watch data was linked with the NICUS Data Collection, and with routinely collected birth and hospital data for births between 2007 and 2010. The sensitivity, specificity, and positive and negative predictive values for transfusion were calculated, compared to the Blood Watch data. The agreement between the NICUS and Blood Watch datasets on quantity transfused was also assessed. RESULTS: Data was available on 3934 infants, of which 16.2% were transfused. Transfusion was reported in the NICUS Data Collection with high specificity (98.3%, 95% confidence interval (97.8%,98.7%)), but with some under-enumeration (sensitivity 89.2% (95% CI 86.5%,91.5%)). There was excellent agreement between the NICUS and Blood Watch datasets on quantity transfused (Kappa 0.90, 95% CI (0.88,0.92)). Transfusion reporting in the hospital data for these infants was also reliably reported (Sensitivity 83.7% (95% CI 80.6%,86.5%), specificity 99.1% (95% CI 98.7%,99.4%)). CONCLUSIONS: Transfusion is reliably reported in the neonatal intensive care unit data, with some under-reporting, and quantity transfused is well recorded. The NICUS Data Collection provides useful information on blood transfusions, including quantity of blood transfused in a high risk population.

Frail older people with multi-morbidities in primary care: a new integrated care clinical pharmacy service.

Background Older people confined to their own homes due to frailty, multiple longterm conditions and/or complex needs, are known to be at risk of medicines-related problems. Whilst a health and social care team approach to supporting these patients is advocated, there is limited evidence regarding how pharmacists can best contribute. Objective To describe a new specialist pharmacy service (called the integrated care clinical pharmacist) in terms of how it works, what it achieves and its policy implications. Setting Patients' own homes in Lambeth, London, UK. Method Community matrons identified patients who were experiencing medicines related problems. These were referred to the integrated care clinical pharmacist who undertook a full medication review and recorded activities, which were independently analysed anonymously. Main outcome measure Medicines-related problems and the associated interventions. Result 143 patients were referred to the service over a 15-month period. A total of 376 medicines-related problems were identified: 28 (7%) supply issues, 107 (29%) compliance issues, 241 (64%) clinical issues. A diverse range of interventions were instigated by the pharmacist, requiring the coordination of community pharmacists, primary and secondary health and social care professionals. Conclusion This project demonstrated that including an integrated care clinical pharmacy service as part of the health and social care team that visits frail, older people in their own homes has benefits. The service operated as part of a wider inter-professional community team. The service also supported current health policy priorities in medicines optimization by identifying and addressing a wide range of medicines related problems for this vulnerable patient group.

Assessing the Accuracy of Reporting of Maternal Red Blood Cell Transfusion at Birth Reported in Routinely Collected Hospital Data.

Introduction Hospital administrative data collections have been used to describe transfusion practice, particularly in relation to the maternity population. Knowledge of the accuracy of this data is important in order to interpret the results of such studies. The aim of this study was to compare the accuracy of reporting of red cell transfusion around childbirth within hospital data with data submitted by hospital blood banks. Methods Linked hospital and birth data from New South Wales, Australia, between June 2006 and December 2010 were used to identify blood transfusions occurring at delivery. This reporting was compared with the gold standard of blood pack level information submitted by hospital blood banks, and sensitivity, specificity, and positive and negative predictive values calculated. Reporting related to quantity and timing of transfusion were also considered. Results Data were available for 235,796 births, with blood bank data identifying that 2.0 % of received a blood transfusion. Overall the sensitivity of hospital data for identifying transfusion was 84.8 % (95 % CI 83.7 %, 85.8 %) with specificity 99.9 % (99.9 %, 99.9 %). Sensitivity was better for births involving a postpartum haemorrhage [Sn 90.9 % (89.9 %, 91.9 %)], and poorer for births in regional hospitals [Sn 78.8 % (76.0 %, 81.5 %)]. Almost all (96 %) transfusions of 10 or more units were identified in hospital data, and there was no difference in reporting depending on whether the transfusion was on the baby's date of birth or not. Discussion The reliability of hospital reporting of transfusion in maternity patients is high, however with some underreporting of cases.

'I'm fine doing it on my own': partnerships between young people and their parents in the management of medication for asthma and diabetes.

Recent UK policy has highlighted the importance of a young person's family in their care and the need for health professionals to work in partnership with young people and their parents. This research provides health professionals with an insight into how the responsibilities for different aspects of medicine management are shared between young people and their parents in the home. It highlights the dynamic nature of partnerships between parents and young people and the considerable role of young people in medicine management in the home, which contrasts with their more limited involvement in consultations with health care professionals. The findings are based on semi-structured interviews conducted in the participants' own homes, with 69 young people aged 8-15 years (43 young people with asthma; 26 young people with diabetes) and their parents (138 interviews in total), recruited through general practice (GP) surgeries.

Management and clinical outcomes of transfusion-dependent thalassaemia major in an Australian tertiary referral clinic.

OBJECTIVE: To evaluate the management, clinical outcomes and adherence to chelation therapy in adult transfusion-dependent patients with thalassaemia major. DESIGN, SETTING AND PARTICIPANTS: We reviewed all transfusion-dependent adults with thalassaemia major (n = 44) attending the Haematology Department at the Prince of Wales Hospital, Sydney, in 2005. Data were collected retrospectively (2000-2005) and prospectively (2005) for cross-sectional clinical audit from clinical reviews, patient questionnaires, pharmacy dispensing records and routine laboratory investigations. MAIN OUTCOME MEASURES: Iron overload and its complications; complications of transfusion; adherence to subcutaneous and oral chelation therapy (expressed as a percentage based on the ratio of the amount dispensed to the prescribed dose). RESULTS: The prevalence of diabetes mellitus was 18%; hypothyroidism, 16%; hypogonadism, 32%; cardiomyopathy, 9%; and osteopenia/osteoporosis, 83%. Serological evidence of exposure to hepatitis C and hepatitis B was present in 41% and 14% of patients, respectively, and 23% of patients had active hepatitis C infection. Predictors of complications included increasing number of years of transfusion, increasing age, coprescription of desferrioxamine and deferiprone, and poor adherence to desferrioxamine treatment. There was a wide range of adherence to therapy with desferrioxamine (0-100% of prescribed dose; mean, 46%; median, 49%) and deferiprone (29%-214% of prescribed dose; mean, 117%; median 112.5%). CONCLUSION: The health outcomes in our patients were similar to or better than those of patients in other cohorts, but, despite the availability of effective chelating agents, our patients had marked iron overload and a high incidence of complications.

Comparison of ITS sequences from UK and North American sugar-beet powdery mildews and the designation of Erysiphe betae.

Powdery mildew of sugar beet, a disease of major economic significance, was first described at the beginning of the 20th century, and since then there has been some confusion over the correct taxonomic identity of the causal agent. In Europe, the fungus was initially classified as the novel species Microsphaera betae, later re-named Erysiphe betae, whilst in America it was identified as E. polygoni, despite sugar-beet isolates from both regions having a host range restricted to Beta species. It is possible that more than one fungus causes the disease, as published descriptions of conidiogenesis have differed. In this study, isolates of the fungus collected from sugar beet in the UK and USA were investigated for polymorphisms in the rDNA ITS region to determine if the same species caused the disease in both countries, whether there was any justification for the retention of the name E. polygoni in the USA, and to search for evidence of a second species infecting sugar beet. From a total of 18 isolates examined, 23 ITS sequences were obtained. Fifteen of these, which included the UK and USA isolates, were identical and the remainder had single-base substitutions, indicating that the fungi were conspecific. Dendrogram analysis of Erysiphales ITS regions revealed that the UK and North American isolates were more closely related to E. heraclei than to E. polygoni. It is proposed that the species name Erysiphe betae be used for the powdery mildew fungus that infects sugar beet. No evidence was found in this study for a second sugar-beet powdery mildew species.

Seasonal variation of pretransfusion hemoglobin levels in patients with thalassemia major.

Patients with thalassemia major often report that they do not maintain their usual pretransfusion hemoglobin concentration during the summer season. We collected 3977 pretransfusion hemoglobin values, amount of blood transfused, and intertransfusion intervals for 94 patients with thalassemia major from 4 centers worldwide. We also assessed the hematocrits of blood donors, the hemoglobin content of units transfused in one center, and the local mean monthly temperatures during the periods of data collection. Pretransfusion hemoglobin levels were significantly lower during the summer in all centers except the one center where monthly temperatures have the least variation throughout the year. A similar relationship to temperature was observed for the hematocrits of blood donors and the hemoglobin content of donor units. This study confirms that pretransfusion hemoglobin levels in patients with thalassemia major are lower in the summertime. Possible mechanisms include expansion of plasma volume with resultant hemodilution in the patient and lower hemoglobin content in donor blood.

Partnerships between older people and their carers in the management of medication.

UNLABELLED: Background. Responsibility for medication can be an integral part of the informal caring role. Aims and objectives. To explore partnerships between older people and their carers in the management of medication and consider the implications for health professionals. Methods. Older people and their carers were identified through community pharmacies in four randomly selected areas of England. Data regarding their activities, responsibilities and experiences of managing medication were collected in semi-structured interviews conducted in respondents' own homes. Ninety-four transcripts relating to 47 older people and their associated carers were analysed using a qualitative approach. Results. Responsibility for medication was shared to varying extents between older people and their carers, and different patterns of partnership were identified. Differing perspectives between older people and their carers regarding the role, purpose and need for medication were revealed. Underlying these perspectives were issues concerning the sharing/concealment of information, autonomy and control. Caring was also described as a dynamic process. Older people and carers commented on how sharing responsibilities for medication varied on a day-to-day basis, as well as expressing concern regarding the changing needs of the older person and the carer's capacity to cope. CONCLUSIONS: Older people and their carers work together in diverse and sometimes complex ways to manage medication. Problems included dilemmas relating to the sharing of information, patient determination, disputes about the control of medication and concerns about the future. RELEVANCE TO PRACTICE: These patterns of partnership need to be recognized and taken into account by health professionals when providing information, advice and support. They need to listen for indications of differing perspectives and be aware of their possible implications for adherence to medication regimens. In caring for older people, health professionals need to find a balance that respects their autonomy whilst providing support for carers to enable them to be effective in their roles.

Switching of prescription drugs to over-the-counter status: is it a good thing for the elderly?

Prescription medicines are increasingly being switched to over-the-counter (OTC, nonprescription) status in the developed world, with the support of government policy. These changes may provide greater choice for individuals and offer potential savings in government spending on health while expanding the market for pharmaceutical companies. However, there is concern regarding the safety of these reclassifications. Elderly people are the largest consumers of prescription and OTC medicines and are more vulnerable to drug adverse effects and the risks of multiple or inappropriate medications. Commonly purchased agents such as NSAIDs have recognised adverse effects which have been shown to be more common in the elderly. Furthermore, all sedatives, including antihistamines, have a propensity to cause falls in older people. As many doctors do not ask patients about OTC medicine use, problems related to use of these drugs may go undetected. Furthermore, the increased availability of OTCs may result in a delay in patients consulting medical practitioners for potentially serious conditions, although this has not so far been investigated. In the UK, the recent switch of a low-dose HMG-CoA reductase inhibitor (statin) to OTC status has caused concern. Although there might theoretically be some benefits from improved access to medications used in primary and secondary prevention of heart disease, the actual outcomes of use of this reduced dose of the statin will be difficult or impossible for patients or practitioners to monitor. OTC drug use implies a mutual responsibility for communication between patients and health professionals that in practice is not always achieved. Epidemiological research is needed to investigate patterns of OTC use and evaluate the potential risks of OTC medicines in elderly people. Governments, regulatory bodies, professionals and the drug industry have a responsibility to ensure that robust systems are in place if the increased use of OTC medicines by elderly people is to be safe and effective.

Supporting parents in managing drugs for children with cystic fibrosis.

A semi-structured interview guide was used to interview 17 parents of children with cystic fibrosis identified through a shared care patient database at a London hospital to examine parents' medication-related roles and problems. Parents described their responsibilities in the home and the problems experienced, including adherence to regiments, involvement in decision-making, and relationships with the hospital teams and other healthcare professionals. The findings confirmed medication management as an integral part of the informal caring role. Many practical problems of ensuring the availability and administration of medication on a regular basis were described. Information gaps and problems with medication adherence increased the stress of providing effective care. The involvement of healthcare professionals across primary, secondary and tertiary care sectors in supporting parents in all aspects of medication management, including the development of strategies for transferring the responsibility for medication to their children, must be improved.

Building concordant relationships with patients starting antidepressant medication.

Fifty one patients beginning courses of antidepressant medication were recruited from general practice surgeries in two health authorities in London and interviewed on two occasions. Respondents were asked about their experiences of using antidepressant medication, including their information needs and the level of involvement which they had had in making decisions about their medication. Analysis was carried out using qualitative procedures. The study identified information needs which were unmet at the start of treatment, including the impact of adverse drug reactions on patients' lives, the very gradual process of recovery and information regarding dosage prescribed in the context of minimum and maximum dosages. Respondents also had a broad view of the term dependency that needed to be addressed. However, some respondents reported that they experienced difficulty in absorbing information given during the initial consultation. Therefore developing strategies for reinforcement of information would be advantageous. Patients involvement in decision making varied between respondents and at different points in therapy.

"Death was a blessing"--should it ever be pharmaceutically hastened? British pharmacists' views.

OBJECTIVES: To investigate the views and experiences of British pharmacists in physician-assisted suicide (PAS) and voluntary active euthanasia (VAE) and to examine whether differences in views were associated with personal characteristics. METHOD: A postal questionnaire was mailed to a random sample of 500 registered pharmacists, with addresses in England or Wales, stratified according to sex and community/hospital working environments. MAIN OUTCOME MEASURE: Pharmacists' reports of their views and experiences of PAS and VAE. RESULTS: Completed questionnaires were received from 295 respondents (response rate: 59%). The majority of respondents (83%) reported that at times, a person had the right to choose their own manner of death; 61% and 53% thought that there should be changes in the Law to legalise VAE and PAS, respectively. If it were legal to do so, 63% stated that they would be willing to dispense medication for VAE and 64% for PAS. However, only 45% agreed that the pharmacist should have a role in advising the prescriber on the choice and dose of drugs used. Sex, age, and years registered as a pharmacist were not found to be significantly associated with views on the practices of PAS and VAE. However, pharmacists who reported having a religion were significantly less likely to favour such practices. On comparing the views of community and hospital pharmacists, community pharmacists were significantly less likely than expected to want to be informed about the intended purpose of lethal drugs. CONCLUSION: In this survey, while over half of British pharmacists did not disagree in principle to the legalisation of VAE and/or PAS, they were less supportive of direct involvement in such procedures. Religion was a discriminatory factor associated with negative views of VAE and PAS. The significant minority of pharmacists not wanting to know the purpose of drugs they suspected might be for PAS or VAE is not in accordance with professional accountability, reflecting the complex and sometimes conflicting legal and moral aspects of such practices when deciding upon a course of action.

A multi-centre survey among informal carers who manage medication for older care recipients: problems experienced and development of services.

The UK Government has highlighted the need to develop appropriate information and support services for informal carers. Previous research that has investigated informal caring has found that managing medication is one aspect of the caring role that presents its own problems; however, these have not been subject to detailed examination. The objective of the present paper was to report the number and type of problems experienced by informal carers when managing medication for older care recipients, and to relate these to measures of coping and health. This was a cross-sectional survey undertaken in one district in each of four randomly selected health authority areas in England. Structured interviews, comprising closed and open questions, with 184 informal carers and 93 associated older care recipients were conducted in participants' own homes. Data were gathered on the number and type of medication-related problems experienced in relation to the informal caring role, and the impact of these from carers' perspectives in terms of coping and health. Sixty-seven per cent of carers reported problems with at least one medication-related activity. Problems were associated with all types of medication-related activities, and experienced by carers providing different levels of care for older people. Four themes were identified from carers' accounts which illustrated a diversity of practical problems and anxieties: maintaining continuous supplies of medication in the home; assisting with administration; making clinical judgements; and communicating with care recipients and health professionals. Carers reporting greater numbers of medication-related problems were more likely to experience higher levels of carer strain (P < 0.001) and poorer mental health status (P < 0.001). The findings of the present study provide insights to inform the development of primary care services to support informal carers in the management of medication for older people.

Identification and exploitation of novel disease resistance genes in sugar beet.

Sugar beet is a valuable arable crop providing a large proportion of world sugar supplies. It is susceptible to a range of fungal and viral diseases, to most of which there is inadequate genetic resistance. Control instead relies largely on the use of pesticides. To increase the sustainability of sugar-beet cultivation, strong and durable genetic resistance is urgently needed. This review describes an IACR-Broom's Barn programme devoted to evaluating Beta germplasm for novel resistance to major viral and fungal diseases, and its progress in elucidating the numbers and locations of the genes responsible.