RSS 1.0Faculty of Health and Social Care
The Faculty of Health and Social Care is one of the major providers of Health and Social Care education in the North West and offers a wide range of programmes at both undergraduate and postgraduate levels. Programmes are delivered at four main locations: Riverside Campus (Chester), Leighton (Crewe), Warrington Campus and Wirral (Clatterbridge).
Sub-communities within this community
Collections in this community
Recent Submissions
-
Universal credit, lone mothers and poverty: some ethical challenges for social work with children and familiesThis article critically evaluates and contests the flagship benefit delivery system Universal Credit for lone mothers by focusing on some of the ethical challenges it poses, as well as some key implications it holds for social work with lone mothers and their children. Universal Credit was first introduced in the United Kingdom (UK) in 2008, and echoes conditionality-based welfare policies adopted by neoliberal governments internationally on the assumption that paid employment offers a route out of poverty for citizens. However, research evidence suggests that the risks of conditionality polices for lone parents can often include increased poverty, a deterioration in mental health or even destitution posed by paternalistic sanctions or precarious low-paid employment, which can undermine parenting capacities and children’s well-being. The article also critically appraises and questions challenges posed by an increased reliance upon contractual ethics by governments, alongside the wider behaviour modifying policies of the workfare-orientated state. This includes that working-class lone mothers can erroneously be stigmatised as representing a morally challenged dependent burden through activation policies and risk-averse social work practices.
-
Underlying thinking pattern profiles predict parent-reported distress responses in autism spectrum disorderAppreciating autistic neurodiversity is important when supporting autistic people who experience distress. Specifically, use of a profiling model can reveal less visible autistic differences, including strengths and abilities. Binary logistic regressions showed that the likelihood of extreme distress responses could be interpreted based on parent-reported autistic thinking pattern profiles for 140 young people. Perspective-taking (specifically empathy), extreme demand avoidance, and over-sensory sensitivity each contributed to the combined regression models. From the clinical perspective of autism as a multi-dimensional and inter-connected construct, there may be implications for planning support and building positive self-understanding. Individually tailored adjustments and support strategies may be identified more easily after delineating variables found across four core aspects: sensory coherence, flexible thinking, perspective-taking, and regulation. Keywords: Autism; Distress; Profile; Strengths; Thinking patterns.
-
Decision making in the management of adults with malignant colorectal polyps: An exploration of the experiences of patients and cliniciansAim: A diagnosis of colorectal polyp cancer presents a treatment dilemma. The decision between segmental resection versus endoscopic surveillance is difficult due to lack of good quality clinical evidence for either option. The aim of this study was to understand the decision-making experiences of both clinicians and patients when faced with such a diagnosis. Methods: Qualitative, semi-structured interviews were undertaken with ten clinicians involved in the care of patients diagnosed with polyp cancer and five patients who had experience of a diagnosis of polyp cancer. All clinicians and patients were from four hospital Trusts across the North of England. Interviews were audio recorded, transcribed verbatim and analysed using the principles of Interpretative Phenomenological Analysis. Results: Analysis of the interview transcripts evidenced the difficulties faced by both groups when faced with treatment decisions following a diagnosis of colorectal polyp cancer. Some of these difficulties were specific to either the clinician or patient group. Themes which were common to both groups included: complexity of risk information; external influences, unexpected diagnosis; and time. In addition, hospital system factors were disclosed which also influenced clinician and patient experiences. Conclusion: This research study has evidenced several factors such as uncertainty, complexity of risk information and influences on decisions which are preventing patients being fully involved in treatment decisions following a diagnosis of colorectal polyp cancer. Recommendations for improvements in practice, including a framework to assist treatment decision making in the future have been highlighted. What does this paper add to the literature? This qualitative study is, to the authors knowledge, the first exploring clinician and patient experiences of treatment decision making following a colorectal polyp cancer diagnosis. Key factors influencing how treatment decisions are made have been identified. As a result, a framework is proposed highlighting critical factors for consideration to deliver patient centred care.
-
Commentary on "Older carers of people with learning disabilities: Their experiences with local authority assessment processes and personnel"Purpose - The purpose of this paper is to provide a commentary on "Older carers of people with learning disabilities: their experiences with local authority assessment processes and personnel" written by Rachel Forrester-Jones. Design/methodology/approach - The commentary considers the experiences of older carers in the context of research, legislative and policy changes over the last 30+ years. Findings - The needs of older carers of adults with learning disabilities are well recognised within the (limited) literature. Less attention has been given to practical strategies to identify and support such carers or to their broader family context. Originality/value - This commentary highlights that assessors carrying out carers' needs assessments should consider whether adults with learning disabilities are providing care to their older relative. The recognition of possible mutual or reciprocal care needs to be acknowledged and appropriate support offered.
-
The psychological distress in healthcare workers: Current perspectives and challengesAims and objectives. The review presents evidenced-based literature on psychological distress amongst health care professionals; the work is not a systematic review but covers a wide selection of contemporary literature and covers the COVID-19 pandemic. The review discusses several reasons why psychological distress within health care professionals requires separate consideration and strategies to support resilience and access to support. Background. Health care workers report high workplace stress levels, burnout, psychological distress, and an increased risk of mental health problems. This is when the World Health Organisation recommends supporting health care professionals’ mental health and social aspects. It is also accepted that the physical and mental ill-health in health care workers can impact operational effectiveness and delivery of patient outcomes. Literature review. The integrative review utilized keywords to undertake a search of the literature. The following key terms ‘healthcare worker,’ ‘health professional,’ ‘mental health,’ ‘resilience,’ ‘support,’ ‘social risk factors,’ ‘physical risk factors’ and ‘Intervention.’ The PsycINFO, CINAHL and Embase and the Cochrane library were searched to find contemporary research articles. Conclusions. The review has collated the available evidence and recommendations for supporting healthcare workers. It is recognized that stressors can increase the prevalence of psychological distress and lead to recruitment and retention issues. Stressors for psychological distress in health care professionals are the impact of patient-specific situations, interprofessional working relationships and perceived workload burden.
-
Does integrated health and care in the community deliver its vision? A workforce perspectivePurpose –The purpose of this paper is to explore and capture workforce perceptions, experiences and insights of the phenomena of integrated care (IC) in a community health and care NHS trust in England; including whether there are any associated factors that are enablers, barriers, benefits or challenges; and the level of workforce engagement in the process of integrated health and care. Design/methodology/approach – A qualitative design based on an interpretivist research paradigm was used with a purposive sampling technique. Five in-depth semi-structured interviews were conducted with community nursing, social workers and allied health professionals. Colaizzi’s (1978) descriptive phenomenological seven-step method was applied to analyse data, with the emergence of 170 significant statements, 170 formulated meanings and 8 thematic clustering of themes to reveal 4 emergent themes and 1 fundamental structure capturing the essential aspects of the structure of the phenomenon IC. Findings – This study revealed four interdependent emergent themes: (1) Insight of IC and collaboration: affording the opportunity for collaboration, shared goals, vision, dovetailing knowledge, skills and expertise. Professional aspirations of person-centred and strength-based care to improve outcomes. (2) Awareness of culture and professionalism: embracing inter-professional working whilst appreciating the fear of losing professional identity and values. Working relationships based on trust, respect and understanding of professional roles to improve outcomes. (3) Impact of workforce engagement: participants felt strongly about their differing engagement experience in terms of restructuring and redesigning services. (4) Impact of organisational structure: information technology (IT) highlighted a barrier to IC as differing IT platforms prevent interoperability with one system to one patient. Shared positivity of IC, embracing new ways of working. Originality/value – This study proposes considerations for future practice, policy and research from a local, national and global platform, highlighting the need for any IC strategy or policy to incorporate the uniqueness of the “voice of the workforce” as a key enabler to integration developments, only then can IC be a fully collaborative approach.
-
Critical analysis of the Armed Forces Covenant Fund Trust Aged Veterans FundBackground: Relatively little research is available regarding the specific needs of older military veterans and the services introduced to support them. In 2016, the Armed Forces Covenant Fund Trust launched the Aged Veterans Fund (AVF), to understand the impact that military service may have on ageing, and to support initiatives targeting their health and well-being. This fund was financed for 5 years and included 19 UK portfolio projects. Method: The paper presents a retrospective evaluation on the processes and impact of the AVF, with the intent of informing policy, educational services, service providers and stakeholders of the lessons learnt. The inclusion criteria was veterans and their families aged 65 years of age or over. In 2019, data were drawn from documentary evidence related to the programmes. Qualitative analysis were performed on 78 eligible sources and 10 themes were identified. Results: Programmes were rolled out via collaborative partnerships referrals, focusing on person-centred or skill-exchange approaches. Challenges were encountered, such as capacity and timelines issues. A limited amount of associated cost-savings was observed, even if examples of sustainability and high satisfaction were reported. Evidence was found of programmes boosting health and well-being outcomes, in raising awareness, and in positively impacting on clinical practice, such as re-admission rates. Conclusion: The AVF programmes were successful in their intent to provide support to older veterans and their families. The findings provide indicators of the next steps required for the support of ageing veterans. Further investigation of the cost-effectiveness of age-friendly veterans’ services is needed.
-
Employing with conviction: The experiences of employers who actively recruit criminalised peopleIn England and Wales, criminal reoffending costs £18 billion annually. Securing employment can support desistance from crime, but only 17% of ex-prisoners are employed a year after release. Understanding the motivations of employers who do recruit criminalised people therefore represents an important area of inquiry. This article draws upon qualitative interviews with twelve business leaders in England who proactively employ criminalised people. Findings reveal that inclusive recruitment can be (indirectly) encouraged by planning policies aimed to improve social and environmental well-being and that employers often work creatively to meet employees’ additional needs, resulting in commercial benefits and (re)settlement opportunities.
-
The Teaching of Psychological Theory in the Undergraduate Pre-Registration Nurse Training Curriculum: Systematic, Integrative Literature ReviewAims and objectives. To establish how best to integrate psychology education into the pre-registration nurse training curriculum to enhance clinical practice. Background. Educational psychology focuses on applications of science to understand and improve how students learn and how they are taught. A key challenge for academics is integrating psychological theory within teaching sessions and clinical practice. Didactic teaching methods have had limited success as students do not see the direct relevance of psychological theory for clinical practice. Problem-based learning and simulation sessions may enhance the perceived importance for clinical practice. Design. Systematic, integrative literature review. Methods. A systematic search of the literature using multiple databases and search engines between the years 2010-2020 was undertaken using keywords and PICO algorithm. For this study, the following keywords were utilised; student nurse, pre-registration, education, problem-based learning, practice skills, simulation, psychology and learning theory. PICO identifiers were (Participants) pre-registration students, (Intervention) – psychology and psychological learning theory, (Comparison) – didactic taught sessions with problem-based and simulation, (Outcome) - improvement in theory or practice-based assessment. Results. Eleven studies were included. Evidence for traditional didactic teaching is limited. There is evidence that problem and simulation-based learning has shown success in demonstrating clinical practice implications. Conclusions. The findings reveal that psychology education is considered a central aspect of nurse training. Observational research is required to understand better the link between psychological knowledge and clinical practice. Relevance to clinical practice. There should be a strategic focus on the development and implementation of a coherent psychological theory in the pre-registration nurse training curriculum. Coherent and applied psychology curricula may have clear benefits for nurse education and clinical practice.
-
Being at the Bottom Rung of the Ladder in an Unequal Society: A Qualitative Analysis of Stories of People without a HomeBackground: Homelessness is rising in the United Kingdom, despite investment in measures to eradicate it made by the government and charity organisations. Aim: The aim is to examine the stories of homeless people in order to document their perceptions of their social status, the reasons that led to their homelessness, and propose a conceptual explanation. Method: We conducted 26 semi-structured interviews in three centres for homeless people in Cheshire, North West of England. Results: Three categories—education, employment, and health—emerged from the data and provided a theoretical explanation for the reasons that led to their homelessness. These are vital not only for the successful negotiation of one’s way out of homelessness, but also for achieving other social goods, including social connections, social mobility, and engaging in positive social relationships. Conclusion: Participants catalogued the adverse childhood experiences, which they believe limited their capacity to meaningfully engage with the social institution for social goods, such as education, social services, and institutions of employment. Since not all people who have misfortunes of poor education, poor health, and loss of job end up being homeless, we contend that a combination of these with multiple adverse childhood experiences may have weakened their resilience to traumatic life changes, such as loss of job and poor health.
-
Homelessness Is Socially Created: Cluster Analysis of Social Determinants of Homelessness (SODH) in North West England in 2020Abstract: Poverty creates social conditions that increase the likelihood of homelessness. These include exposure to traumatic life experiences; social disadvantages such as poor educational experiences; being raised in a broken family, care homes or foster care; physical, emotional, and sexual abuse; and neglect at an early age. These conditions reduce people’s ability to negotiate through life challenges. This cross-sectional study documents the clustering and frequency of adverse social conditions among 152 homeless people from four cities in North West England between January and August 2020. Two-step cluster analysis showed that having parents with a criminal record, care history, and child neglect/abuse history was predictive of homelessness. The cluster of indicator variables among homeless people included sexual abuse (χ2 (N = 152) = 220.684, p < 0.001, Cramer’s V = 0.7), inappropriate sexual behaviour (χ2 (N = 152) = 207.737, p < 0.001, Cramer’s V = 0.7), emotional neglect (χ2 (N = 152) = 181.671, p < 0.001, Cramer’s V = 0.7), physical abuse by step-parent (χ2 (N = 152) = 195.882, p < 0.001, Cramer’s V = 0.8), and physical neglect (χ2 (N = 152) = 205.632, p < 0.001, Cramer’s V = 0.8). Poverty and homelessness are intertwined because of the high prevalence of poverty among the homeless. Poverty sets up a chain of interactions between social conditions that increase the likelihood of unfavourable outcomes: homelessness is at the end of the interaction chain. Interventions supporting families to rise out of poverty may also reduce entry into homelessness.
-
Social Work Students sharing practice learning experiences: Critical reflection as process and method.This paper offers a commentary regarding the centrality of critical reflection in social work before discussing a research project drawing on a sample of ten social work students as they approached the end of their social work training in one English university. The original intention of the research was to focus solely on students’ perceptions of critical reflection, but when using a more reflexive approach, we identified that participants utilised the focus groups as an opportunity to discuss their practice learning experiences per se before considering and discussing critical reflection. Most students were placed in child protection social work teams and discussed how they felt unprepared for such a fast-paced and stressful environment. Participants felt that the expectations some practitioners had of students were unrealistic, and not always commensurate with the Professional Capabilities Framework. Students highlighted the use of practice scenarios in developing their knowledge and skills particularly when considering their application of critical reflection. This study highlights the significance of adequate preparation for practice and argues for a more focused agenda for future research exploring the culture of learning, including those factors that inhibit students sharing their concerns as well as the training needs of educators
-
Final Report of the Evaluation of the Self-Directed Support PilotIn recent years personalisation and the individualisation of health and social care have become key drivers of change. The process was initiated by the previous Labour government, and the new Coalition government has sought to accelerate the shift through policy documents, continued consultation and practical guides [1-7]. Personalisation in learning and physical disability services is becoming well established, however mental health services have been slow to take up the agenda and offer Personal Budgets to service users. Stockport Metropolitan Borough Council (SMBC), together with Pennine Health Care NHS Trust, are working to address this and implemented a pilot study to explore the possibilities for self directed support and Personal Budgets within Stockport mental health services.
-
A narrative review of literature on the use of health and social care by older trans adults: what can United Kingdom services learn?We carried out a narrative review and thematic analysis of literature on the physical healthcare, mental healthcare and social care of trans older adults to ascertain what is known about older trans adults’ contacts with and use of health and social care. Thirty papers were found: a majority originated in the United States. Five themes were identified: experience of discrimination/ prejudice and disrespect; health inequalities; socioeconomic inequalities; positive practice; and staff training and education. The first three themes present challenges for providers and service users. Experiences of discrimination/ prejudice and disrespect over the course of their lives powerfully influence how older trans adults engage with care services and practitioners. Health and socio-economic inequalities suggest that older trans adults are likely to have greater need of services and care. The remaining two themes offer opportunities for service improvement. We conclude that more research is needed, that there is a strong argument for taking a life course perspective in a spirit of cultural humility, and that contextual societal factors influence service users and providers. We identify positive trans-inclusive practices which we commend to services. More needs to be done now to make older adult services appropriate and welcoming for trans service users.
-
Evidence-based practice and evidence-informed practice competencies in undergraduate pre-registration nursing curricula: a document analysis at a University in EnglandEvidence-based practice and evidence-informed practice competencies in undergraduate pre-registration nursing curricula: a document analysis at a University in England Abstract Background In response to the heightened emphasis on incorporating the best available evidence into healthcare decision-making, healthcare training institutions have been actively incorporating Evidence-Based Practice (EBP), and/or Evidence-Informed Practice (EIP) competencies into undergraduate healthcare curricula. However, there is a gap in the scientific knowledge about the actual contents, as well as the extent of integration of EBP and EIP in undergraduate pre-registration nursing programmes. Method A document analysis utilising Rohwer et al.’s (2014) framework was conducted to review and analyse the content of EBP and EIP competencies in the 2018/2019 curriculum of the undergraduate pre-registration nursing programme of a University located in England, United Kingdom. Results Competencies relevant to EBP were included in four nursing modules. However, EIP competencies were not included in the curriculum. Conclusion There is an urgent need for a more structured and holistic way of teaching and assessing EBP competencies through the integration of the principles of EIP, in order to enhance the effective application of evidence into clinical nursing practice.
-
Evidence of a Hemophilia Employment Gap: Comparing Data from CHESS US+ and the 2019 Current Population SurveyINTRODUCTION Severe hemophilia A (&lt;1% normal FVIII activity) and B (&lt;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.
-
Problem Joints and Their Clinical and Humanistic Burden in Children and Adults with Moderate and Severe Hemophilia a: CHESS Paediatrics and CHESS IIIntroduction 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.
-
Examination and Validation of a Patient-Centric Joint Metric: "Problem Joint"; Empirical Evidence from the CHESS US DatasetIntroduction Severe hemophilia (FVIII/FIX level &lt;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.
-
Flexible shared parental leave: Shaping infant-feeding decisions in the UK - A longitudinal explanatory sequential internet-mediated mixed methods studyInfant 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.
