HOw patients view extended half‐life products: impressions from real‐world experience (The HOPE study)

Introduction Extended half‐life (EHL) clotting factors have been shown to offer people with haemophilia (PwH) protection from bleeding with fewer infusions, which might reduce treatment burden. Aim The HOw Patients view Extended half‐life products (HOPE) study aimed to explore, understand and describe patient expectations around the prophylactic use of EHL products and to establish whether these expectations were met through individual follow‐up analysis. Methods The HOPE study was a prospective, qualitative cohort study conducted among PwH who had switched to Fc fusion protein EHL products in routine clinical care and who had not been recruited to clinical trials of these products. Semi‐structured audio‐recorded interviews were undertaken over two time points; transcripts were analysed to systematically generate theory from data that contains both inductive and deductive thinking. Results Forty‐three interviews were conducted with 25 participants. Most participants were positive about EHL treatment and intended to continue using them. Reduced frequency of infusions meant lives were less disrupted or dominated by haemophilia, and there was less perceived stress on overused veins. For those PwH who did not reduce infusion frequency, there were other perceived benefits from EHLs with respect to greater protection with higher trough levels and fewer bleeds. Conclusion Patients switching to EHL treatments believe these products will result in fewer infusions and less disruption of everyday life, leaving them feeling more protected with fewer bleeds and increased activity levels, as well as enhanced well‐being and mental health. Understanding patient expectation and experience around using products adds real‐world data to clinical trial experience

The extent, variability, and attitudes towards volunteering among undergraduate nursing students: implications for pedagogy in nurse education

In the aftermath of the Francis Report nurses are being called to account for an apparent lack of care and compassion, leading to debate around pedagogy in nurse education. Absent from this debate is a consideration of student volunteering within undergraduate nursing programmes and its potential to promote student nurses self-esteem and to enhance the development of critical thinking skills. The aim of this study was therefore to understand the extent of and attitudes towards volunteering among nursing students. A mixed methods approach using a specifically developed questionnaire, followed by in-depth interviews to ascertain extent, variability, and attitudes towards volunteering revealed low levels of volunteering among nursing students. Limited time, limited access, and lack of academic support were cited as reasons. Nevertheless, students displayed positive attitudes towards volunteering. While volunteering has been shown to impact upon students abilities to think critically, to develop personal values and respond to the needs of others, volunteering within the UK undergraduate nursing programme considered is neither structured nor formalized. Nurse educators should pay attention to the positive benefits of volunteering for nursing students and consider ways in which volunteering might be incorporated into the curriculum

Do governing body and CSU nurses on clinical commissioning groups really lead a nursing agenda? Findings from a 2015 Survey of the Commissioning Nurse Leaders' Network Membership

Aims This paper presents findings from a 2015 survey of the Commissioning Nurse Leaders’ Network (CNLN) aiming to understand how governing body nurses (GBNs), perceive their influence and leadership on clinical commissioning groups (CCGs). Methods An online survey method was used with a census sample of 238 GBNs and nurses working in CSUs, who were members of the CNLN. The response rate was 40.7% (n=97). Results While most GBNs felt confident in their leadership role, this was less so for non-executive GBNs and nurses in CSUs were much less positive than GBNs about their influence on CCGs. Conclusions Despite GBNs’ satisfaction with their impact on CCGs, there is no reliable evidence of this impact. The purpose of such roles to "represent nursing, and ensure the patient voice is heard” (NHSCC 2016:9) may be a flawed aspiration, conflating nursing leadership and patient voice. Implications for Nursing Management This is the first study to explicitly explore differences between executive and non-executive GBNs and CSUs. Achieving CCG goals, including developing and embedding nursing leadership roles in CCGs, may be threatened if the contributions of GBNs, and other nurses supporting, CCGS, go unrecognised or if GPs or other CCG executive members dominate decision-making

Accidental consumption of aspartame in phenylketonuria: patient experiences

Aspartame is a phenylalanine containing sweetener, added to foods and drinks, which is avoided in phenylketonuria (PKU). However, the amount of phenylalanine provided by aspartame is unidentifiable from food and drinks labels. We performed a cross-sectional online survey aiming to examine the accidental aspartame consumption in PKU. 206 questionnaires (58% female) were completed. 55% of respondents (n = 114) were adults with PKU or their parent/carers and 45% (n = 92) were parents/carers of children with PKU. 74% (n = 152/206) had consumed food/drinks containing aspartame. Repeated accidental aspartame consumption was common and more frequent in children (p 0.0001). The aspartame containing food/drinks accidentally consumed were fizzy drinks (68%, n = 103/152), fruit squash (40%, n = 61/152), chewing gum (30%, n = 46/152), flavoured water (25%, n = 38/152), ready to drink fruit squash cartons (23%, n = 35/152) and sports drinks (21%, n = 32/152). The main reasons described for accidental consumption, were manufacturers’ changing recipes (81%, n = 123/152), inability to check the ingredients in pubs/restaurants/vending machines (59%, n = 89/152) or forgetting to check the label (32%, n = 49/152). 23% (n= 48/206) had been prescribed medicines containing aspartame and 75% (n = 36/48) said that medicines were not checked by medics when prescribed. 85% (n = 164/192) considered the sugar tax made accidental aspartame consumption more likely. Some of the difficulties for patients were aspartame identification in drinks consumed in restaurants, pubs, vending machines (77%, n = 158/206); similarities in appearance of aspartame and non-aspartame products (62%, n = 127/206); time consuming shopping/checking labels (56%, n = 115/206); and unclear labelling (55%, n = 114/206). These issues caused anxiety for the person with PKU (52%, n = 106/206), anxiety for parent/caregivers (46%, n = 95/206), guilt for parent/carers (42%, n = 87/206) and social isolation (42%, n = 87/206). It is important to understand the impact of aspartame and legislation such as the sugar tax on people with PKU. Policy makers and industry should ensure that the quality of life of people with rare conditions such as PKU is not compromised through their action

Provision and supervision of food and protein substitute in school for children with PKU: parent experiences

Children spend a substantial part of their childhood in school, so provision of dietary care and inclusion of children with phenylketonuria (PKU) in this setting is essential. There are no reports describing the dietary support children with PKU receive whilst at school. The aim of this cross-sectional study was to explore the experiences of the dietary management of children with PKU in schools across the UK. Data was collected using an online survey completed by parents/caregivers of children with PKU. Of 159 questionnaire responses, 92% (n = 146) of children attended state school, 6% (n = 10) private school and 2% (n = 3) other. Fourteen per cent (n = 21/154) were at nursery/preschool, 51% (n = 79/154) primary and 35% (n = 54/154) secondary school. Sixty-one per cent (n = 97/159) said their child did not have school meals, with some catering services refusing to provide suitable food and some parents distrusting the school meals service. Sixty-one per cent of children had an individual health care plan (IHCP) (n = 95/155). Children were commonly unsupervised at lunchtime (40%, n = 63/159), with snacks (46%, n = 71/155) and protein substitute (30%, n = 47/157), with significantly less supervision in secondary than primary school (p 0.001). An IHCP was significantly associated with improved supervision of food and protein substitute administration (p 0.01), and better communication between parents/ caregivers and the school team (p 0.05). Children commonly accessed non-permitted foods in school. Therefore, parents/caregivers described important issues concerning the school provision of low phenylalanine food and protein substitute. Every child should have an IHCP which details their dietary needs and how these will be met safely and discreetly. It is imperative that children with PKU are supported in school

The Global Garden project: Imagining plant science

Plants are rich sources of drugs and other high-value chemicals that are used by humans. Many of the plant species that produce important molecules grow in remote locations and have extensive histories of indigenous use. Global concerns about sustainable supply have in some cases led to the development of alternative methods for production using biotechnological approaches. Consideration of responsible stewardship and use of the world's plants and associated traditional knowledge for the greater human good are at the heart of the Convention on Biological Diversity and the recently implemented Nagoya Protocol. The development of fora that enable open discussion and exploration of issues relating to these aspects will be critical in endeavors to protect and preserve both the environment and present and future generations. Summary: Here, we investigate the application of cross-disciplinary approaches to explore societal perceptions of plants and their uses, focusing on high-value chemicals. The Global Garden project engages the public, researchers, and regulators in day-long workshops that combine science, poetry, and visual arts practice to foster participants’ skill in imagining and re-imagining relationships between high-value plant products, biotechnology, and social and ethical aspects of these. The project represents an intervention into discussions of science communications and public engagement, addressing the uses and benefits of arts-based approaches to foster imaginative engagement with plant science. The workshop reported here began with real plant case studies and a discussion of the aims of scientists using them. Participants were invited to respond to the issues of relationships among plants, chemicals, and people raised by the case studies through poetry and visual artwork. The poems and artwork that were produced show variation in the participants’ imaginings of plant science. They present distinctive visions of research and innovation and of the associated ethical and social implications. This type of forum, based on creative immersion, opens up opportunities for engaging with and exploring complex relations between plant biotechnology, society, and ethics. This article offers a reflection on the uses, challenges, and implications of arts-based approaches to research communications and public engagement that disrupts traditional knowledge transfer structures. In doing so, we frame the project within science communication pedagogies and consider public engagement a form of pedagogy

Quality of hospital care for sick newborns and severely malnourished children in Kenya: A two-year descriptive study in 8 hospitals

BACKGROUND: Given the high mortality associated with neonatal illnesses and severe malnutrition and the development of packages of interventions that provide similar challenges for service delivery mechanisms we set out to explore how well such services are provided in Kenya. METHODS: As a sub-component of a larger study we evaluated care during surveys conducted in 8 rural district hospitals using convenience samples of case records. After baseline hospitals received either a full multifaceted intervention (intervention hospitals) or a partial intervention (control hospitals) aimed largely at improving inpatient paediatric care for malaria, pneumonia and diarrhea/dehydration. Additional data were collected to: i) examine the availability of routine information at baseline and their value for morbidity, mortality and quality of care reporting, and ii) compare the care received against national guidelines disseminated to all hospitals. RESULTS: Clinical documentation for neonatal and malnutrition admissions was often very poor at baseline with case records often entirely missing. Introducing a standard newborn admission record (NAR) form was associated with an increase in median assessment (IQR) score to 25/28 (22-27) from 2/28 (1-4) at baseline. Inadequate and incorrect prescribing of penicillin and gentamicin were common at baseline. For newborns considerable improvements in prescribing in the post baseline period were seen for penicillin but potentially serious errors persisted when prescribing gentamicin, particularly to low-birth weight newborns in the first week of life. Prescribing essential feeds appeared almost universally inadequate at baseline and showed limited improvement after guideline dissemination. CONCLUSION: Routine records are inadequate to assess newborn care and thus for monitoring newborn survival interventions. Quality of documented inpatient care for neonates and severely malnourished children is poor with limited improvement after the dissemination of clinical practice guidelines. Further research evaluating approaches to improving care for these vulnerable groups is urgently needed. We also suggest pre-service training curricula should be better aligned to help improve newborn survival particularly