• Population Health Screening after Environmental Pollution

      Stewart, Alex G.; orcid: 0000-0002-4931-5340; email: dragonsteeth@doctors.org.uk; Wilkinson, Ewan; orcid: 0000-0002-2167-8756; email: ewilkinson@chester.ac.uk (MDPI, 2020-11-24)
      Following environmental pollution exposure, calls to screen the population for disease or disease markers are often made. Population screening is a cross-sectional review of a population to find latent cases or biomarkers of disease that indicate the possibility of disease development; it differs from environmental screening or an epidemiological survey. Recognized standard approaches have been developed over 60 years to ensure quality and effectiveness in complex programs. We surveyed the literature for papers on health screening following environmental exposures and checked them for reference to accepted criteria such as those of Wilson and Jungner. We applied these criteria to three situations covering source/hazard (arsenic contaminated land), pathway/exposure (radiation release), and receptor/disease (lead poisoning). We identified 36 relevant papers. Although across the papers the whole range of criteria were addressed, no paper or program utilized recognized criteria. Issues and gaps identified included limited strategic approaches, lack of treatment, environmental prevention being seen as the screening outcome instead of treatment of identified individuals, and programs which did not fit the World Health Organization screening description. Robust discussion in the literature is needed to consider the organization and role of health screening following environmental exposures.
    • The cat is out of the bag – point-of-care testing (POCT) is here to stay

      Phin, Nick; Poutanen, Susan M (European Centre for Disease Control and Prevention (ECDC), 2020-11-05)
    • Examination and Validation of a Patient-Centric Joint Metric: "Problem Joint"; Empirical Evidence from the CHESS US Dataset

      Burke, Tom; Rodriguez Santana, Idaira; Chowdary, Pratima; Curtis, Randall; Khair, Kate; Laffan, Michael; McLaughlin, Paul; Noone, Declan; O'Mahony, Brian; Pasi, John; et al. (American Society of Hematology, 2020-11-05)
      Introduction Severe hemophilia (FVIII/FIX level <1%) is characterized by spontaneous hemarthrosis leading to progressive joint deterioration and chronic pain in the affected individual. Unless these recurrent hemarthroses can be prevented, e.g. with the use of prophylactic factor replacement therapy, these patients will develop chronic synovitis, pain, and eventually destruction of the joint. Current metrics such as 'Target joint' and other clinical measures of joint morbidity are prevalent and widely accepted. Measures focused solely on bleeding activity, such as the 'Target joint' metric, are arguably becoming less sensitive as current treatment strategies look to significantly reduce or eradicate joint bleeds, though they maintain clinically relevant and complementary to delivery of comprehensive hemophilia care. Key opinion leaders in the haemophilia field have debated the need for a more patient relevant measure of haemophilia-related joint morbidity. 'Problem Joint' (PJ), which is defined as having chronic joint pain and/or limited range of movement due to compromised joint integrity (chronic synovitis and/or haemophilic arthropathy), with or without persistent bleeding was derived through consensus. The objectives of this working group are to examine the usefulness and validity of the PJ metric. Initial research presented here was used to test the sensitivity of PJ as a patient relevant metric with respect to key outcomes for US haemophilia patients. Methods Data on PJs, as well as demographic, clinical and socio-economic variables was captured within the 'Cost of Haemophilia Across Europe: A Socioeconomic Survey' datasets (CHESS: I, II, Paediatric, and US studies). These data contain a total of 992 paediatric (age 1-17) and 2,437 adults (age 18+) with haemophilia from eight European countries and the US. Statistical analysis explored the association of PJ count and location with respect to two key outcomes: quality of life, as measured by an EQ-5D score, and overall work impairment, measured by the Work Productivity and Activity Impairment Questionnaire (WPAI). Those with current inhibitors were excluded from the analysis, and the US cohort comprised the focus of this initial research into the topic. Results The US cohort contained information on 345 people with haemophilia (PwH) and captured adults only, with a mean age of 35 years. Approximately, 43% of PwH had one or more PJs. Lower body PJs were more prevalent than upper body: 40% had one or more lower body PJs vs. 27% upper body. The majority of PJs were located in the ankles, knees and elbows. The relationship between EQ-5D and number of PJs showed a negative trend (see Figure 1): the average EQ-5D score was: 0.81 for those with zero PJs (N=197); 0.79 for those with one PJ (N=24); 0.70 for two PJs (N=29); 0.68 for three PJs (N=24) and 0.49 for those patients with four of more PJs (N=59). Similarly, an increase in number of PJs meant greater work productivity impairment versus no PJs recorded: 30.08% (N=102) vs. 19.51% (N=137), respectively. Discussion Results from the US cohort found that an increase in the number of PJs was associated with an increasing humanistic burden in PwH. The proposed Problem Joint definition takes a holistic viewpoint and provides a patient relevant perspective. Further work is planned to evaluate the appropriateness of the measure, and test the sensitivity in European and pediatric cohorts. Disclosures Burke: HCD Economics: Current Employment; University of Chester: Current Employment; F. Hoffmann-La Roche Ltd: Consultancy. Rodriguez Santana:HCD Economics: Current Employment. Chowdary:Pfizer: Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; Sobi: Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; Roche: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Sanofi: Membership on an entity's Board of Directors or advisory committees; Shire (Baxalta): Membership on an entity's Board of Directors or advisory committees; Spark: Membership on an entity's Board of Directors or advisory committees; BioMarin: Honoraria; Novo Nordisk: Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; CSL Behring: Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; Chugai: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Freeline: Membership on an entity's Board of Directors or advisory committees, Research Funding; Bayer: Membership on an entity's Board of Directors or advisory committees, Research Funding. Curtis:Bayer: Consultancy; Novo Nordisk: Consultancy; Patient Reported Outcomes, Burdens and Experiences: Consultancy; USC Hemophilia Utilization Group Study (HUGS): Consultancy. Khair:Haemnet: Membership on an entity's Board of Directors or advisory committees; Biomarin: Consultancy; HCD Economics: Consultancy; Novo Nordisk: Consultancy, Membership on an entity's Board of Directors or advisory committees; Medikhair: Membership on an entity's Board of Directors or advisory committees; Sobi: Consultancy, Honoraria, Research Funding, Speakers Bureau; CSL Behring: Honoraria, Research Funding; F. Hoffmann-La Roche Ltd: Honoraria, Research Funding; Takeda: Honoraria, Speakers Bureau; Bayer: Consultancy, Honoraria, Speakers Bureau. Laffan:Shire: Consultancy; LFB: Consultancy; Roche: Consultancy; Sobi: Consultancy; Pfizer: Consultancy; CSL: Consultancy; Pfizer: Speakers Bureau; Bayer: Speakers Bureau; Roche-Chugai: Speakers Bureau; Takeda: Speakers Bureau; Leo-Pharma: Speakers Bureau; Octapharma: Consultancy. McLaughlin:BioMarin: Consultancy; Novo Nordisk: Consultancy, Speakers Bureau; Sobi: Consultancy, Speakers Bureau; Roche/Chugai: Speakers Bureau; Takeda: Speakers Bureau. Noone:European Haemophilia Consortium: Membership on an entity's Board of Directors or advisory committees; Research Investigator PROBE: Research Funding; Healthcare Decision Consultants: Membership on an entity's Board of Directors or advisory committees. O'Mahony:Biomarin: Honoraria, Membership on an entity's Board of Directors or advisory committees; Freeline: Honoraria; UniQure: Honoraria. Pasi:BioMarin: Consultancy, Honoraria, Other: Grants, personal fees, and nonfinancial support; honoraria as member of scientific advisory boards and symposia; uniQure: Other: Grants and nonfinancial support , Research Funding; ApcinteX: Consultancy, Other: Personal fees ; Octapharma: Honoraria, Other: Personal fees and nonfinancial support; honoraria as member of scientific advisory boards and symposia , Speakers Bureau; Novo Nordisk: Honoraria, Other: Personal fees and nonfinancial support; honoraria as member of scientific advisory boards and symposia ; Catalyst Biosciences: Consultancy, Other: Personal fees and nonfinancial support; honoraria as member of scientific advisory boards and symposia; Biotest: Consultancy, Honoraria, Other: Personal fees and nonfinancial support; honoraria as member of scientific advisory boards and symposia; Alnylam (Sanofi): Other: Personal fees and nonfinancial support ; Takeda: Consultancy, Honoraria, Other: Personal fees; honoraria as member of scientific advisory boards and symposia ; Sanofi: Honoraria, Other: Personal fees and nonfinancial support; honoraria as member of scientific advisory boards and symposia, Research Funding; Sigilon: Research Funding; Tremeau: Research Funding; Sobi: Consultancy, Honoraria, Other; Roche: Honoraria, Other; Pfizer: Other. Skinner:Genentech: Consultancy, Honoraria; Spark Therapeutics: Other, Speakers Bureau; Pfizer: Other, Speakers Bureau; Takeda: Honoraria, Research Funding; uniQure: Research Funding; Biomarin: Consultancy, Research Funding; CSL Behring: Research Funding; Freeline Therapeutics: Research Funding; Novo Nordisk: Honoraria, Research Funding; Roche: Honoraria, Research Funding; Sanofi: Honoraria, Research Funding, Speakers Bureau; Sobi: Research Funding; Bayer: Consultancy, Research Funding. O'Hara:HCD Economics: Current Employment, Current equity holder in private company; F. Hoffmann-La Roche Ltd: Consultancy.
    • Problem Joints and Their Clinical and Humanistic Burden in Children and Adults with Moderate and Severe Hemophilia a: CHESS Paediatrics and CHESS II

      McLaughlin, Paul; Hermans, Cedric; Asghar, Sohaib; Burke, Tom; Nissen, Francis; Aizenas, Martynas; Meier, Oliver; Dhillon, Harpal; O'Hara, Jamie (American Society of Hematology, 2020-11-05)
      Introduction Severe hemophilia A (SHA) is characterized by spontaneous (non-trauma related) bleeding episodes into the joint space and muscle tissue, leading to progressive joint deterioration and chronic pain. Chronic joint damage is most often associated with severe hemophilia, however more recent research has illustrated that people with moderate hemophilia A (MHA) also experience hemophilic arthropathy and functional impairment. The need to measure joint health in children as well as adults, is underscored by findings from the Joint Outcome Continuation Study, which found that FVIII prophylaxis was insufficient to protect joints from damage, from childhood through adolescence in severe HA (Warren et al., 2020). The objective of this analysis is to gain a more patient-centric understanding of the clinical, economic and humanistic burden associated with 'Problem Joints', a measure of joint morbidity developed in consultation with an expert panel to overcome limitations with existing measures, in people with MHA and SHA. Methods A descriptive cohort analysis was conducted, utilizing retrospective, cross-sectional real-world data from the 'Cost of Haemophilia in Europe: a Socioeconomic Survey' (CHESS Paeds and CHESS II), studies of adult and pediatric persons with hemophilia. The analysis population is comprised of children (17 and below) with MHA or SHA in CHESS Paeds, and adults aged 20 and over with MHA or SHA in CHESS II. To account for the possibility that persons aged 18 or 19 in CHESS II may have participated in CHESS Paeds, these individuals were excluded from the analysis. Physician-reported clinical outcome data and patient/caregiver-reported quality of life were analyzed. A problem joint (PJ) is defined as having chronic joint pain and/or limited range of movement due to compromised joint integrity (i.e. chronic synovitis and/or hemophilic arthropathy). Analyses were stratified by number of PJs: none, 1 PJ, and 2+ PJs. We report retrospective data of the 12 months prior to study enrollment, on annualized bleeding rate (ABR), prevalence of target joints (TJ), as defined by the International Society on Thrombosis and Haemostasis, and EQ-5D-/5L/Y/Proxy score. Results are presented as mean (standard deviation) or N (%). Results Among 785 participants (N = 464 SHA; N = 321 MHA) in CHESS Paeds, mean age and BMI were 10.33 (4.63) and 22.50 (17.07), respectively. Of 493 participants (aged 20 and above) in CHESS II (N = 298 SHA; N = 195 MHA), the mean age and BMI were 38.61 (14.06) and 24.55 (2.92), respectively. Current inhibitor to FVIII replacement was more prevalent in children than in adults (10% vs. 5%). In CHESS II, approximately 40% of people with MHA and 49% with SHA had one or more PJs, respectively [1 PJ (23% vs. 28%); 2+ PJs (16% vs. 21%)]. In CHESS Paeds, approximately 14% of children with MHA and 18% with SHA had at least one PJ, respectively [1 PJ (9% vs. 14%); 2+ PJs (5% vs. 3%)]. TJs were less prevalent with MHA in comparison to SHA, in both adults (24% vs. 45%) and children (13% vs. 22%). Clinical burden was higher among both children and adults with PJs compared to those with no PJs. ABR correlates with the number of PJs, in those with MHA and SHA in CHESS II (Figure 1). Similarly, PJs were associated with higher ABR across MHA and SHA in CHESS Paeds (Figure 2). Hemophilia-related hospitalizations were higher in both adult and pediatric participants with PJs. In CHESS II, MHA with no PJs had fewer [0.73 (1.23)] hospitalizations compared to having those with 1 PJ [1.38 (1.11)] or 2+ PJs [1.28 (1.25)]. Similarly, children with MHA with 2+ PJs had 1.60 (1.92) hemophilia-related hospitalizations, compared to 1.38 (1.92) with 1 PJ and 0.71 (1.14) with no PJs. PJs were associated with impaired quality of life. In CHESS II, MHA and SHA EQ-5D-5L values in persons with no PJs were 0.81 (0.19) and 0.79 (0.18), respectively, compared to 0.65 (0.16) and 0.62 (0.23) with 1 PJ, and 0.65 (0.14) and 0.51 (0.33) in with 2+ PJs. A similar trend was observed in EQ-5D-Y and EQ-5D-proxy scores in CHESS Paeds. Conclusions Data from CHESS Paeds and CHESS II demonstrate an association between chronic joint damage, as measured by the 'problem joint' definition, and worsening clinical and quality of life outcomes, across both MHA and SHA. Further analyses will seek to expand upon the initial results presented here, to investigate the wider elements of burden associated with compromised long-term joint health. Disclosures McLaughlin: BioMarin: Consultancy; Novo Nordisk: Consultancy, Speakers Bureau; Sobi: Consultancy, Speakers Bureau; Roche/Chugai: Speakers Bureau; Takeda: Speakers Bureau. Hermans:Novo Nordisk: Consultancy, Speakers Bureau; Roche: Consultancy, Speakers Bureau; Sobi: Consultancy, Research Funding, Speakers Bureau; Biogen: Consultancy, Speakers Bureau; CAF-DCF: Consultancy, Speakers Bureau; CSL Behring: Consultancy, Speakers Bureau; Shire, a Takeda company: Consultancy, Research Funding, Speakers Bureau; Pfizer: Consultancy, Research Funding, Speakers Bureau; Bayer: Consultancy, Research Funding, Speakers Bureau; WFH: Other; EAHAD: Other; Octapharma: Consultancy, Speakers Bureau; Kedrion: Speakers Bureau; LFB: Consultancy, Speakers Bureau. Asghar:HCD Economics: Current Employment. Burke:HCD Economics: Current Employment; University of Chester: Current Employment; F. Hoffmann-La Roche Ltd: Consultancy. Nissen:GSK: Research Funding; Novartis: Research Funding; Actelion: Consultancy; F. Hoffmann-La Roche Ltd: Current Employment. Aizenas:F. Hoffmann-La Roche Ltd: Current Employment, Current equity holder in publicly-traded company. Meier:F. Hoffmann-La Roche Ltd: Current Employment, Current equity holder in publicly-traded company. Dhillon:HCD Economics: Current Employment; F. Hoffmann-La Roche Ltd: Other: All authors received editorial support for this abstract, furnished by Scott Battle, funded by F. Hoffmann-La Roche Ltd, Basel, Switzerland. . O'Hara:F. Hoffmann-La Roche Ltd: Consultancy; HCD Economics: Current Employment, Current equity holder in private company.
    • Evidence of a Hemophilia Employment Gap: Comparing Data from CHESS US+ and the 2019 Current Population Survey

      Asghar, Sohaib; Burke, Tom; Misciattelli, Natalia; Kar, Sharmila; Morgan, George; O'Hara, Jamie (American Society of Hematology, 2020-11-05)
      INTRODUCTION Severe hemophilia A (<1% normal FVIII activity) and B (<1% normal FIX activity) are congenital bleeding disorders characterized by uncontrolled bleeding, either spontaneously or in response to trauma or surgery. Recent commentary has identified a number of patient-important and patient-relevant outcomes that have been understudied, namely the challenges faced by people living with hemophilia to participate in the labor force. The socio-economic impact of hemophilia is comparatively less well understood than clinical outcomes and therapy-related costs. Under-employment and under-utilization have long-term consequences to individuals' job prospects and psychosocial health, as well as an economic cost to the society. The objective of the analysis is to compare labor market participation, among people with severe hemophilia from the US and the general population. This analysis draws on household data derived from the 2019 Current Population Survey (CPS), and on patient-reported data from a patient-centric study conducted in 2019 of people with severe hemophilia, in the US: the 'Cost of Severe Hemophilia Across the US: A Socioeconomic Survey' (CHESS US+). METHODS A patient-centric framework informed the design of CHESS US+ a retrospective (12 months prior to study enrollment), cross-sectional dataset of adults with severe hemophilia in the US. Conducted in 2019, the study used a patient-completed questionnaire to collect data on patient-relevant clinical, economic, and humanistic outcomes. This analysis examines labor market participation (full-time, part-time, unemployed), and corresponding general population data derived from the 2019 Current Population Survey (CPS). Data on the general population were sourced from the 2019 CPS 'Employment status of the civilian noninstitutional population'. Persons 'not in the labor force' in the 2019 CPS and retired persons in CHESS US+ were not included in the analysis. We present data on the civilian labor force, in CHESS US+ and in the 2019 CPS. Results are presented as mean (standard deviation) or N (%). RESULTS Of 356 patients profiled in the CHESS US+ study, 97 (27%) had severe hemophilia B and 257 (73%) had severe hemophilia A. Mean age and weight (kg) of the cohort was 34.99 (12.15) and 85.71 (22.81), respectively. The labor force participation rates of non-retired people with severe hemophilia in CHESS US+ (N = 340) and the general population (161,458) are described in Table 1. Examining aggregate data on employment status observed a higher proportion of people with severe hemophilia in part-time employment (24.4% vs. 15.7%). Differences in the labor force participation of people living with severe hemophilia compared to the general population were most pronounced in the full-time employment rate and the unemployment rate. Compared to 80.7% of the general population (Table 1), only 53.5% of people with severe hemophilia in CHESS US+ had a full-time job. Moreover, the unemployment rate (Table 1) in the 2019 CPS compared with the rate observed in CHESS US+ (3.7% vs. 22.1%) provides a stark contrast in the employment experiences of people living with severe hemophilia relative to the general population. CONCLUSIONS This analysis of CHESS US+ illustrates the impact of severe hemophilia on labor force participation. People with severe hemophilia were more likely than the general population to be unemployed, or in part-time employment. A notable contrast was observed in the rate of full-time employment and unemployment, among the general population compared to people living with severe hemophilia. These data illustrate the need to quantify the impact of hemophilia using a holistic approach that considers the cost of involuntary illness-related part-time and unemployment. Disclosures Asghar: HCD Economics: Current Employment. Burke:HCD Economics: Current Employment; F. Hoffmann-La Roche Ltd: Consultancy; University of Chester: Current Employment. Misciattelli:Freeline: Current Employment, Current equity holder in publicly-traded company. Kar:Freeline: Current Employment, Current equity holder in publicly-traded company. Morgan:HCD Economics: Current Employment; uniQure: Consultancy. O'Hara:F. Hoffmann-La Roche Ltd: Consultancy; HCD Economics: Current Employment, Current equity holder in private company.
    • Employment support needs of personnel undergoing a medical discharge: a phenomenological and IPA study based on the experiences of British Army Veterans and Stakeholders

      Thomas, Mike; Mason-Whitehead, Elizabeth; Flood, Grahame H. (University of Chester, 2020-10-30)
      Wounded, injured and sick (WIS) military personnel from operations in Iraq and Afghanistan 2003-14 initially lacked comprehensive holistic recovery support. An Army Recovery Capability (ARC) evolved to improve such support. Future employment is an important factor in recovery and transition. This study examines the employment support needs of Army WIS likely to be medically discharged. Until this study, little research specifically considered such needs. The study examines military to civilian Transition in its widest sense. Holistic Transition involves coming to terms with ‘the new me’, including a civilian identity in a timeframe preceding and extending beyond military discharge. The voice of individual WIS personnel has been lacking in reviewing recovery and transition. Using Interpretive Phenomenological Analysis (IPA), data from twelve medically discharged veterans was triangulated against data from five specialist employment consultants and six military and charity stakeholders. The main findings are that the employment needs of the WIS are not fully defined, identified, assessed or reviewed by the chain of command. Methods of effectiveness (MOEs) are lacking in the MOD, hampering the Army’s capability to manage change and assess the effectiveness of its processes and programmes. A lack of resources, unsynchronised policy, poor communications, and a gap between intent and delivery causes variation in support from the chain of command; whilst compensating charity resources mask inefficiencies in the MOD. Recommendations include a major review of the ARC and the medical discharge process; treating employment support as a subset of a broader Transition; the development of MOEs; greater compliance with policy and improved assurance; further research to examine individual WIS needs and outcomes and the use of identity process theory to enhance understanding of the challenges of change facing service leavers crossing the military-civilian divide. A life-course view is recommended to improve military reintegration and the optimisation of available resources.
    • Including public health considerations in trade and investment agreements

      Thow, A; Garde, A; Mabhala, M; Smith, R; Kingston, P; Manning, P; Hunter, D; Winters, L A; Lincoln, P; Parish, R (Oxford University Press (OUP), 2020-09-30)
      Abstract There is widespread recognition that trade and investment agreements (TIAs) can affect health services, access to medicines, NCD prevention (particularly related to tobacco, alcohol and unhealthy food) and health systems structures. In addition, these binding international economic agreements can constrain the policy space available for innovative, evidence-based health policymaking. Although TIAs can have positive outcomes for employment and economic growth, these benefits are only likely to accrue when governments are pro-active in implementing complementary policies to mitigate impacts on other sectors and to address potential inequalities arising. The aim of this panel session is to examine the ways in which TIAs can be designed to achieve economic goals while also protecting public health, and identify complementary policy measures that may be needed as well as strategies for strategic policy engagement. This panel will be hosted by the UK-PRP PETRA Network (Prevention of noncommunicable disease using trade agreements). The UK will be negotiating a range of new TIAs over the coming years, representing a window of opportunity for strategic engagement with policymakers regarding how public health can be protected and promoted within these agreements. There is an emerging global body of evidence regarding how consideration of health can be integrated into TIAs, both textually and through strategic engagement with policymakers before and during the negotiation phase. Experience to date indicates common global challenges and opportunities for health and trade, as well as significant potential for cross country learning regarding trade and health. The panel discussion will use the UK experience as a springboard to address these global issues.
    • Prevalence of treatment resistance and clozapine use in early intervention services.

      Stokes, Imogen; Griffiths, Siân Lowri; orcid: 0000-0003-0031-7174; Jones, Rowena; Everard, Linda; Jones, Peter B; Fowler, David; Hodgekins, Joanne; Amos, Tim; Freemantle, Nick; Sharma, Vimal; et al. (2020-09-17)
      Treatment resistance causes significant burden in psychosis. Clozapine is the only evidence-based pharmacologic intervention available for people with treatment-resistant schizophrenia; current guidelines recommend commencement after two unsuccessful trials of standard antipsychotics. This paper aims to explore the prevalence of treatment resistance and pathways to commencement of clozapine in UK early intervention in psychosis (EIP) services. Data were taken from the National Evaluation of the Development and Impact of Early Intervention Services study (N = 1027) and included demographics, medication history and psychosis symptoms measured by the Positive and Negative Syndrome Scale (PANSS) at baseline, 6 months and 12 months. Prescribing patterns and pathways to clozapine were examined. We adopted a strict criterion for treatment resistance, defined as persistent elevated positive symptoms (a PANSS positive score ≥16, equating to at least two items of at least moderate severity), across three time points. A total of 143 (18.1%) participants met the definition of treatment resistance of having continuous positive symptoms over 12 months, despite treatment in EIP services. Sixty-one (7.7%) participants were treatment resistant and eligible for clozapine, having had two trials of standard antipsychotics; however, only 25 (2.4%) were prescribed clozapine over the 12-month study period. Treatment-resistant participants were more likely to be prescribed additional antipsychotic medication and polypharmacy, instead of clozapine. Prevalent treatment resistance was observed in UK EIP services, but prescription of polypharmacy was much more common than clozapine. Significant delays in the commencement of clozapine may reflect a missed opportunity to promote recovery in this critical period.
    • Flexible shared parental leave: Shaping infant-feeding decisions in the UK - A longitudinal explanatory sequential internet-mediated mixed methods study

      Mason-Whitehead, Elizabeth; Wyndham, Delyth Y (University of Chester, 2020-09)
      Infant feeding is an enduring public health issue. The changes made to parental leave entitlement which came into effect in April 2015 in the United Kingdom (UK) have the potential to impact infant-feeding decisions. The introduction of flexible shared parental leave (SPL) remodelled maternity and paternity (or adoption) entitlement, enabling parents to share up to 50 weeks’ leave. The discourse has not yet considered this policy shift fully, nor has research comprehensively examined whether it will influence parental feeding decisions. The research design was informed by a narrative literature review followed and a systematic review of the literature, which indicated that few studies consider both infant feeding and parental leave. The systematic review found that focus of the discourses tended towards breastfeeding and maternity leave. In light of the interdisciplinary nature of the topic, a longitudinal explanatory sequential mixed methods design was selected to comprehensively address all strands of the research questions. The research was framed by a theoretical framework meta-model derived from Belsky's (1984) process model of the determinants of parenting, set within Bronfenbrenner's (1977, 1979) ecology of human development (later termed the bioecological systems model (2005)) and informed by a pragmatist lens. A sample of parents of infants born in April 2015 (the first eligible for shared parental leave) were surveyed via online questionnaire. At three points over the course of 12 months, the parents were asked to detail how their infants were fed and about leave decisions. Following on from this, a subset of parents were interviewed to illuminate the decision-making process further. The study aimed to baseline behaviour at the point of policy implementation and record attitudes towards shared leave. The outcome of the research is an initial evidence base documenting infant feeding patterns in the UK in 2015, in the context of a potential future shift stemming from the introduction of shared parental leave. In line with expected projections (BIS, 2013), take-up of shared parental leave was low within the sample of parents who took part. Of interest, the small number that did opt for shared parental leave reflected the wider sample tendency towards breastfeeding at 24-hours, yet mixed feeding to 6 months. Nevertheless, the parents that took part did not shy away from revisiting feeding decisions made in light of day-to-day practicalities, any issues they faced and the development of their infant. The study provides insight into the approach of parents opting for mixed feeding i.e., selecting the feeding mode(s) and/or substance(s) or mode(s)/substance(s) seen as most appropriate at the time. It is atypical (contrasted with conventional definitions applied within the research discourse) in disaggregating breastfeeding and breast milk feeding. Finally, the research further evidences the complexity of the narrative in parental decision-making. In view of the findings, further research is needed to document shared parental leave take-up and how parents are choosing to apportion it. A reconsideration of infant feeding definitions by the relevant agencies, to further the granularity of research data in relation to breastfeeding, breast milk feeding and mixed feeding (mixed mode, mixed substance or mixed method - mode and substance - feeding) would be welcome to improve research outcomes. Moreover, as a result of the discontinuation of the quinquennial Infant Feeding Survey series, there is a need for systematic, low cost research at regular intervals to supplement the modest infant feeding data collected via the Personal Child Health Record programme. Without this research, the significance of the impact of the parental leave policy reform in the UK on infant-feeding decisions may be overlooked.
    • The impact of factor infusion frequency on health-related quality of life in people with haemophilia

      Pedra, Gabriel; Christoffersen, Pia; Khair, Kate; Lee, Xin Ying; O’Hara, Sonia; O’Hara, Jamie; Pasi, John (Haemnet, 2020-08-15)
      Background. Some studies suggest that people with haemophilia (PwH) who use prophylaxis value low frequency of clotting factor administration more than a lower risk of bleeding. However, more frequent infusions offer the potential of reducing joint disease and pain, which in turn may improve functioning and quality of life.AimsTo explore the impact on health-related quality of life (HRQoL) aspects of haemophilia associated with adherence and annual infusion rate in the context of factors influencing treatment that are important to patients, including prophylaxis, chronic pain, concomitant conditions and hospital admission.Materials and methodsHRQoL was assessed in participants with severe haemophilia in the ‘Cost of Haemophilia in Europe: a Socioeconomic Survey’ (CHESS) study who were using prophylaxis. Patients using on-demand treatment were excluded. This multivariate analysis examined the interaction between factors potentially influencing treatment and HRQoL, and minor and major bleeds.ResultsFrom the total CHESS population (n=1,285), 338 (26%) participants provided responses for major and minor bleeds and target joints, and 145 (11%) provided EQ-5D-3L responses. Major and minor bleeds were associated with pain. Patients with severe chronic pain reported a substantial negative impact on HRQoL; but this was significantly improved by increases in the annual infusion rate. This was not apparent in participants with mild or moderate pain.ConclusionIncreasing the frequency of prophylaxis infusions is associated with improved quality of life in PwH who have severe chronic pain. However, increasing the number of infusions per week in those with mild or moderate chronic pain with the intention of improving prophylactic effect may not have the same effect.
    • Supporting nursing students from diverse cultural backgrounds.

      Wiredu, Immanuel; Roberts, Debbie; email: debbie.roberts@chester.ac.uk (2020-07-30)
    • Interaction between Metabolic Genetic Risk Score and Dietary Fatty Acid Intake on Central Obesity in a Ghanaian Population

      Alsulami, Sooad; Nyakotey, David; Dudek, Kamila; Bawah, Abdul-Malik; Lovegrove, Julie; Annan, Reggie; Ellahi, Basma; Karani, Santhanakrishnan Vimaleswaran; University of Reading, University of Chester and Kumasi University (MDPI, 2020-07-27)
      Obesity is a multifactorial condition arising from the interaction between genetic and lifestyle factors. We aimed to assess the impact of lifestyle and genetic factors on obesity-related traits in 302 healthy Ghanaian adults. Dietary intake and physical activity were assessed using a 3 day repeated 24 h dietary recall and global physical activity questionnaire, respectively. Twelve single nucleotide polymorphisms (SNPs) were used to construct 4-SNP, 8-SNP and 12-SNP genetic risk scores (GRSs). The 4-SNP GRS showed significant interactions with dietary fat intakes on waist circumference (WC) (Total fat, Pinteraction = 0.01; saturated fatty acids (SFA), Pinteraction = 0.02; polyunsaturated fatty acids (PUFA), Pinteraction = 0.01 and monounsaturated fatty acids (MUFA), Pinteraction = 0.01). Among individuals with higher intakes of total fat (>47 g/d), SFA (>14 g/d), PUFA (>16 g/d) and MUFA (>16 g/d), individuals with ≥3 risk alleles had a significantly higher WC compared to those with <3 risk alleles. This is the first study of its kind in this population, suggesting that a higher consumption of dietary fatty acid may have the potential to increase the genetic susceptibility of becoming centrally obese. These results support the general dietary recommendations to decrease the intakes of total fat and SFA, to reduce the risk of obesity, particularly in individuals with a higher genetic predisposition to central obesity.
    • A systematic review of the organizational, environmental, professional and child and family factors influencing the timing of admission to hospital for children with serious infectious illness

      editor: Ho, Jacqueline J.; Carter, Bernie; orcid: 0000-0001-5226-9878; email: bernie.carter@edgehill.ac.uk; Roland, Damian; orcid: 0000-0001-9334-5144; Bray, Lucy; Harris, Jane; orcid: 0000-0001-6584-1642; Pandey, Poornima; Fox, Jo; Carrol, Enitan D.; Neill, Sarah; orcid: 0000-0001-9699-078X (Public Library of Science, 2020-07-23)
      Background: Infection, particularly in the first 5 years of life, is a major cause of childhood deaths globally, many deaths from infections such as pneumonia and meningococcal disease are avoidable, if treated in time. Some factors that contribute to morbidity and mortality can be modified. These include organisational and environmental factors as well as those related to the child, family or professional. Objective: Examine what organizational and environmental factors and individual child, family and professional factors affect timing of admission to hospital for children with a serious infectious illness. Design: Systematic review. Data sources: Key search terms were identified and used to search CINAHL Plus, Medline, ASSIA, Web of Science, The Cochrane Library, Joanna Briggs Institute Database of Systematic Review. Study appraisal methods: Primary research (e.g. quantitative, qualitative and mixed methods studies) and literature reviews (e.g., systematic, scoping and narrative) were included if participants included or were restricted to children under 5 years of age with serious infectious illnesses, included parents and/or first contact health care professionals in primary care, urgent and emergency care and where the research had been conducted in OECD high income countries. The Mixed Methods Appraisal Tool was used to review the methodological quality of the studies. Main findings: Thirty-six papers were selected for full text review; 12 studies fitted the inclusion criteria. Factors influencing the timing of admission to hospital included the variability in children’s illness trajectories and pathways to hospital, parental recognition of symptoms and clinicians non-recognition of illness severity, parental help-seeking behaviour and clinician responses, access to services, use and non-use of ‘gut feeling’ by clinicians, and sub-optimal management within primary, secondary and tertiary services. Conclusions: The pathways taken by children with a serious infectious illness to hospital are complex and influenced by a variety of potentially modifiable individual, organisational, environmental and contextual factors. Supportive, accessible, respectful services that provide continuity, clear communication, advice and safety-netting are important as is improved training for clinicians and a mandate to attend to ‘gut feeling’. Implications: Relatively simple interventions such as improved communication have the potential to improve the quality of care and reduce morbidity and mortality in children with a serious infectious illness.
    • Stigma: the representation of anorexia nervosa in UK newspaper Twitter feeds.

      Bowen, Matt; Lovell, Andrew; Waller, Rhian; University of Chester (Taylor and Francis, 2020-07-15)
      Background There is evidence that the representation of mental health in newspapers has an influence on readers’ attitudes, however, relatively little is known about how the industry presents accounts of anorexia nervosa. Further, the industry increasingly uses Twitter as a medium for reaching readers and this remains an under-examined area of research. Aims To explore the representation of anorexia nervosa in the UK national press’ Twitter feeds. Method Frame analysis was used to examine the manner in which anorexia nervosa was represented in the Twitter feeds of all national UK newspapers between 2009-2019 (n=332). This qualitative approach used Braun and Clarke’s stages of thematic analysis, while drawing on Van Gorp’s use of a frame matrix to support the definition of the news frames. Results The analysis identified four news frames: social model, illness model, stress-recovery model and clickbait model. Conclusions The newspapers drew on a range of perspectives in their representation of anorexia nervosa, which typically were not stigmatising in their accounts. However, there was a pattern of using sensationalistic images in some of the tweets, which may encourage readers to view people with anorexia nervosa as Other, and as a consequence contribute to stigmatisation.
    • Cost of non-alcoholic steatohepatitis in Europe and the USA: The GAIN study.

      O'Hara, Jamie; Finnegan, Alan; Dhillon, Harpal; Ruiz-Casas, Leonardo; Pedra, Gabriel; Franks, Bethany; Morgan, George; Hebditch, Vanessa; Jönsson, Bengt; Mabhala, Mzwandile; et al. (2020-07-15)
      Non-alcoholic steatohepatitis (NASH) leads to cirrhosis and is associated with a substantial socioeconomic burden, which, coupled with rising prevalence, is a growing public health challenge. However, there are few real-world data available describing the impact of NASH. The Global Assessment of the Impact of NASH (GAIN) study is a prevalence-based burden of illness study across Europe (France, Germany, Italy, Spain, and the UK) and the USA. Physicians provided demographic, clinical, and economic patient information via an online survey. In total, 3,754 patients found to have NASH on liver biopsy were stratified by fibrosis score and by biomarkers as either early or advanced fibrosis. Per-patient costs were estimated using national unit price data and extrapolated to the population level to calculate the economic burden. Of the patients, 767 (20%) provided information on indirect costs and health-related quality of life using the EuroQOL 5-D (EQ-5D; n = 749) and Chronic Liver Disease Questionnaire - Non-Alcoholic Fatty Liver Disease (CLDQ-NAFLD) (n = 723). Mean EQ-5D and CLDQ-NAFLD index scores were 0.75 and 4.9, respectively. For 2018, the mean total annual per patient cost of NASH was €2,763, €4,917, and €5,509 for direct medical, direct non-medical, and indirect costs, respectively. National per-patient cost was highest in the USA and lowest in France. Costs increased with fibrosis and decompensation, driven by hospitalisation and comorbidities. Indirect costs were driven by work loss. The GAIN study provides real-world data on the direct medical, direct non-medical, and indirect costs associated with NASH, including patient-reported outcomes in Europe and the USA, showing a substantial burden on health services and individuals. There has been little research into the socioeconomic burden associated with non-alcoholic steatohepatitis (NASH). The GAIN study provides real-world data on the direct medical, direct non-medical, and indirect costs associated with NASH, including patient-reported outcomes in five European countries (UK, France, Germany, Spain, and Italy) and the USA. Mean total annual per patient cost of NASH was estimated at €2,763, €4,917, and €5,509 for the direct medical, direct non-medical, and indirect cost categories, respectively. [Abstract copyright: © 2020 The Author(s).]
    • Social Care Workers’ Experiences of Assessing Parents with Learning Disabilities: An Interpretative Phenomenological Analysis Study Based in the Northwest of England.

      Lovell, Andrew; Constance, Lyndsey J. (University of Chester, 2020-06-26)
      Aims: Qualitative research has identified a number of issues when working with parents with learning disabilities. Pre-conceived ideas, professional discrimination and a high percentage of children living away from the family home have featured heavily in the literature. However, less is known about the assessment process, and how practitioners adapt their skills to assess this parental group. The current study therefore aimed to gain an in-depth understanding of the assessment process, utilising a qualitative approach. The study focused upon the experiences of social care assessors from children’s and adult services, and sought to explore the following: the approach social care workers adopt when assessing parents with learning disabilities; if appropriate knowledge is embedded into practice to assess competently; experiences of the application of the PAMS 4.0; multi-disciplinary approach to assessment, and how this exhibits in practice. Method: Semi-structured interviews were carried out with fourteen frontline social care practitioners from children’s and adult services who had direct experience of assessing parents with learning disabilities. The transcripts of the interviews were analysed using Interpretative Phenomenological Analysis (IPA). Results: The analysis produced four master themes. These were; inadequate knowledge to understand complexities; hierarchy; reasonable adjustments; assessing parental ability. An analysis of these master themes and the related super-ordinate themes is presented. Discussion: The results are considered in light of the experiences of the participants, and how this impacts on the assessment of parents with learning disabilities. The study finds that whilst there is evidence the participants hold pre-conceived ideas, a lack of relevant skills and knowledge as well as an unstructured implementation of the Parenting Assessment Manual 4.0, are both contributing factors. Furthermore, problematic multi-agency working and managerial influences impact on the overall outcomes for parents with learning disabilities and their families.
    • The perceived psychological stressors and coping behaviours in university students, on a pre-registration programme.

      Mitchell, Andrew E. P.; University of Chester (Emerald Publishing, 2020-05-20)
      The purpose was to investigate perceived stressors and coping behaviours in student nurses on a pre-registration programme of study. Stress in student nurses has been identified with decreased emotional well-being and poor academic achievement. The significance of stress and coping behaviours in students during training has implications for education and practice. The present study recruited eighty seven pre-registration student nurses in a cross sectional design. Bivariate and multivariate analyses assessed the differences in field and year of study and the students’ perceived stress and coping behaviours. The findings showed that stress is a significant issue in nurse training. Fifty-three percent of the participants had levels higher than the mean. Interestingly, the present study found that high perceived stress was associated with avoidance behaviours. The most common type of perceived stress and ranked by highest factor were from written assignments and a lack of professional skills and knowledge. Their peer group and everyday life activities were shown as potential ways of coping with stressors. Thus, it seems reasonable to focus support on decreasing avoidant and enhancing stress-reducing behaviours. Psychological stress and coping behaviours must be considered together as perceived stress is bound by the ability to ameliorate stress by managing helpful and unhelpful behaviours. The findings may suggest that a potential benefit could come from the provision of helpful strategies such as peer group support and reduction of avoidant behaviours. Also, there seems to be a need for greater mental health literacy in dealing with stress during training.
    • Understanding minimum and ideal factor levels for participation in physical activities by people with haemophilia: An expert elicitation exercise.

      Martin, Antony P; orcid: 0000-0003-4383-6038; Burke, Tom; Asghar, Sohaib; Noone, Declan; Pedra, Gabriel; orcid: 0000-0002-2023-5224; O'Hara, Jamie (2020-04-08)
      The benefits of physical activity (PA) for people with haemophilia (PWH) may include improvements in joint, bone and muscle health. However, the factor VIII activity level required to avoid a bleeding episode associated with PA is unknown. To elicit the opinion of clinical experts on the minimum level and ideal factor VIII activity ('level') required to avoid a bleeding episode during participation in different types of PA for PWH. Based on the 2017 National Hemophilia Foundation PA descriptions, clinical experts estimated a minimally acceptable and an ideal factor level at which a bleed could be avoided. The uncertainty around estimates was quantified using an approach to construct a probability distribution to represent expert opinion. Minimum and ideal factor level increased with higher risk PA, whether or not joint morbidity was present, as did the experts' uncertainty in their estimates (ie the range between lowest and highest estimates for minimum and ideal levels). Mean minimum levels ranged from 4% to 48% for low to high risk for people without joint morbidity, and from 7% to 47% for those with joint morbidity. For ideal factor levels, corresponding figures were 9%-52% and 12%-64%, respectively. To support a patient-centric outcome, expert opinion indicates that the clinical norm of 0.01 IU/mL (1%) trough level is insufficient. It is anticipated that introducing a more targeted approach to meet the needs of patients who are increasingly physically active will benefit patients further in addition to recent treatment advances. [Abstract copyright: © 2020 John Wiley & Sons Ltd.]
    • The value of embedded secondary-care-based psychology services in rheumatology: an exemplar for long-term conditions

      Barnes, Theresa; Taylor, Lou; Eost-Telling, Charlotte; Joy, Thomas; Countess of Chester Hospital; University of Chester; University of Chester; Cheshire and Wirral Partnership (Royal College of Physicians, 2020-02-29)
      Rheumatoid arthritis is an exemplar long term condition, complicated by pain, disability, co-morbidities and long term medication use. It has significant effects on mobility, work performance, social role, sexual function and relationships. It is commonly associated with fatigue and mood disturbance as a result of complex interactions of physical (disease related) and psychosocial factors. NICE guidance recommends the availability of psychological support for these patients. We have implemented a psychology service for our patients with chronic rheumatological conditions. This study was set up to capture the value of this service.
    • A phenomenological exploration of nursing students’ experience of raising a care concern in clinical practice

      Cooper, Elizabeth (University of ChesterUniversity of Chester, 2020-01)
      UK pre-registration healthcare students are expected to raise a care concern about unsafe situations whilst in clinical practice. The UK’s NHS is in the midst of a change to an open, honest and transparent culture which responds to a professional’s concern about patient care, to improve safety and prevent harm. Central to this change is improving the experience of registered healthcare professionals whose decision to raise a care concern is influenced by the organisational culture; this can create a difficult moral choice. The experience of nursing students who decide to raise a care concern has received little attention, and this study sought to explore this under-researched area. A literature review was undertaken which identified that the experience of nursing students who had raised a care concern had not been previously examined. To guide this study, Clarke Moustakas’ (1994) transcendental phenomenological methodology was used to explore nursing students’ lived experience of raising a care concern. Ten nursing students with experience of raising a care concern in clinical practice voluntarily participated in the study. Open interviews conducted between December 2016 and October 2017 were audio recorded and transcribed, exposing individual narratives of raising a care concern in clinical practice. The transcripts were analysed to produce a composite description which summarises nursing students’ lived experience, reflecting four themes or essences: 1) patient centred concern; 2) deciding how to act; 3) having emotional strength; and 4) feedback and support. These typify what it is like for nursing students to raise a care concern whilst in clinical practice. The findings were critically examined and suggest that compassion may motivate nursing students to act when faced with an unsafe situation, seeking to stop patient harm and suffering. Recognising this moral motivation, students described the relevance of emotional strength when dealing with the emotionally complex experience of facing difficult situations, with feedback and support providing comfort plus moral and emotional satisfaction. This study also explores the implications for professional practice, specifically the impact upon future teaching and learning approaches to facilitate nursing students’ ability to detect and act upon unsafe situations; providing listening opportunities to support students in clinical practice; and valuing nursing students who raise a care concern as role models and local clinical leaders. Recommendations include a new national campaign to improve the likelihood of nursing students raising care concerns and updating UK professional guidance.