BACKGROUND: Clinical research has offered many definitions and fragmented perspectives of joint morbidity in haemophilia. As joint damage, pain and mobility impairment can be present without clinical record of persistent bleeding, a person-centric joint morbidity characterisation remained a priority for the haemophilia community, giving rise to the ‘problem joint’ concept. As diagnosing and managing joint morbidity is critical, the aim of this study was to analyse the holistic burden of problem joints in people with moderate or severe haemophilia A (HA). Data from the ‘Cost of Haemophilia in Europe: a Socioeconomic Survey’ (CHESS) cross-sectional studies were used. CHESS-Paediatrics included male paediatric patients (≤ 17 years) with congenital moderate or severe haemophilia, while CHESS II included adult males (≥ 18 years) of any severity. Both studies sought to collect detailed information on the clinical, economic and humanistic burden of haemophilia. Demographics, clinical outcomes, treatment regimen, adherence, physical activity, healthcare resource use and number of problem joints were evaluated and described by HA severity and number of problem joints (none, 1, ≥ 2). RESULTS: In total, 1171 people with non-inhibitor moderate or severe HA from CHESS-Paediatrics (n = 703) and CHESS II (n = 468) were included in this analysis. Presence of problem joints was more prevalent among CHESS II participants (44%) than in CHESS-Paediatrics (14%). Around two-thirds (67%) of CHESS-Paediatrics and 39% of CHESS II participants received prophylactic factor VIII replacement therapy. The presence of chronic pain was greater in severe HA with ‘ ≥ 2’ problem joints in both cohorts. Clinical symptoms and bleed-related hospitalizations were more prevalent in the presence of problem joints regardless of HA severity in both cohorts. CONCLUSIONS: This analysis of the CHESS population studies has expanded on previous work by examining the relevance of the problem joint measure of haemophilic morbidity and its associated burden. Adverse clinical symptoms and increased bleed-related hospitalizations were observed in the presence of problem joints in both children/adolescents and adults across HA severities. Use of person-centric characterizations of joint morbidity may improve analysis of long-term outcomes and lead to improvements in future haemophilia care.

Introduction: This study examines the experiences and unmet needs of caregivers of children with autism spectrum disorder in Nigeria. With a high prevalence in Nigeria, autism spectrum disorder poses a heavy economic burden on society and the patients’ families, with limited social interactions and stigma. Despite this, the unmet needs and psychosocial burdens of autism spectrum disorder on caregivers have been understudied in Nigeria. The study contributes evidence and raises interest in this area of research. Methods: This qualitative study was conducted among twenty-three purposively selected caregivers. Questions from the PREPARE and Zarit Burden Interview tools were adapted for the interview and discussion guides. Data were collected among caregivers of pupils in selected special needs schools in Cross River State, Nigeria. Inductive and deductive approaches were used for the analysis using NVivo 20 pro. The socio-ecological model was used to generate the themes and quotes. Results: The study generated four themes and eleven sub-themes across four levels of the socio-ecological model. Findings from our study showed that caregivers of children undergo significant emotional distress, disbelief, and fear at the early stage of diagnosis. Furthermore, families and friends had difficulty comprehending or accepting their children’s diagnosis, which further created tension and misunderstanding. Socio-cultural contexts such as stigma and isolation were not uncommon in the society. Conclusion: Given the burden of the psychological demand and stigma attached to caregivers and children with autism, there is an urgent need for a tailor-made intervention with the key interplay of individual, interpersonal, societal/institutional, and policy in Nigeria. Advocacy efforts and awareness chaired by caregivers should be strengthened across all levels of the society in Nigeria.

Introduction: Primary healthcare (PHC) patient medical records contain Systematised Nomenclature of Medicine-Clinical Terms (SNOMED-CT) that include information regarding diagnosis, demographics and veterans’ status. This study intended to identify, analyse and compare the prevalence of type 2 diabetes, hypertension, dementia and smoking tobacco in veterans and non-veterans, including stratification by age and gender. Methods: The authors partnered with 13 PHC practices with a population of 137 410 patients. Staff extracted matched veteran and non-veteran SNOMED-CT data from patient medical records; then sent the authors anonymised data in an amalgamated format between October 2023 and January 2024. Patients were from a local community and therefore social and environmental factors would be similar. Submitted information was inputted into an SPSS database 28 for analysis which included descriptive and inferential statistics to indicate statistical significance. Results: In total, 5458 PHC electronic records were examined comprising 2729 veterans and 2729 demographically matched for age and gender non-veterans. Each group contained 86.4% (N=2359) men and 13.6% (N=370) women. The mean age was 63.8 years (SD 17.7). Rates of hypertension were 20.9% in veterans compared with 17.6% in non-veterans (p=0.002). Type 2 diabetes mellitus was 8.3% in veterans compared with 6.4% in non-veterans (p=0.007). Dementia was 2.1% of veterans compared with 2.5% of non-veterans (p=0.32). Smoking was 11.8% of veterans compared with 10.6% of non-veterans (p=0.16). Conclusion: These results reveal that veterans were statistically more likely to be diagnosed with hypertension and diabetes. This study should assist in a better understanding of the healthcare needs of the veteran population to potentially inform better patient-centred care. However, the effectiveness of using PHC patient medical records requires increased efforts to improve data quality which needs improved PHC staff knowledge, consistency in SNOMED-CT coding, better veteran medical e-record registration and coding and better data transmission between the Defence Medical Services and PHC.

Background: Few studies have evaluated direct medical or societal costs of haemophilia in the United Kingdom (UK), and how patient characteristics impact future costs is uncertain. Cost predictors were identified and examined using cross-sectional data from the CHESS I and II studies. Methods: Patient- and physician-reported outcomes were analysed for UK adult males aged ≤ 65, with haemophilia A or B and no recent clinical trial participation. Demographics, haemophilia type and severity, inhibitors, annual bleed rate (ABR), problem joints (PJs), treatment type, and comorbidities, were utilised in regression analyses. Health-related quality of life was assessed using EQ-5D. Generalised linear models estimated expected non-drug haemophilia-related direct medical costs (DMC) and societal costs (non-drug DMC, direct non-medical and indirect costs). Average marginal effects (AMEs) determined predictors of cost. Results: Costs for 378 patients were analysed. Mean age was 33 years and 79% (299) had haemophilia A. Mean annual per-patient DMC were £165,001 (including factor treatment costs) and £4,091 when excluding factor replacement treatment costs (non-drug DMC). Mean annual per-patient non-treatment societal costs were £11,550 (standard deviation £20,171) among those with data available (n = 51). Number of PJs, ABR, and treatment regimen were significant determinants of haemophilia-related non-drug DMC (all P < 0.001). Non-drug DMC increased as ABR increased (AMEs were £2,018 for ABR 1–5, £3,101 for ABR 6–10 and £5,785 for ABR ≥ 11, vs. ABR 0) and by £1,869 per additional PJ. No significant predictors of non-drug haemophilia-related societal costs were identified. Mean EQ-5D score was 0.66, with lower scores observed for people with haemophilia B (0.48) compared with haemophilia A (0.71) and with increasing haemophilia severity. Conclusions: UK direct medical and societal costs of haemophilia are substantial. Non-drug DMC were particularly associated with ABR and number of PJs. These findings may be useful for real-world evaluations of the economic burden of haemophilia in the UK.

Criminalised people play varied roles in the development and delivery of criminal justice services and advocacy around the world, yet rarely feature in texts on service user involvement. The chapter explores how people with lived experiences of the criminal justice system are involved with, and too often excluded from, formal criminal justice knowledge production. We reflect on ‘leaders’ with lived experiences and how they produce, contribute to and constitute criminal justice knowledges. These reflections highlight the importance of being sensitive to the needs of people sharing their shame/trauma-invoking life experiences, offering substantial opportunities beyond volunteering or insecure contracts and real commitments to power sharing. As a single ‘user voice’ is not possible, it is also important that a range of perspectives are represented from activist/practitioner to managerial levels. Importantly, this should include black and minority ethnic men and women, who are overrepresented as recipients of punishment and underrepresented as leaders and influencers, with or without lived experience.

Handwashing is an essential prevention step in foodservice, This randomized comparative study assessed the effectiveness of three training methods -virtual reality (VR), Glo-Germ (GT), and traditional face-to-face training (CT)- in improving handwashing practices among foodservice workers (n = 129). Training focused on the World Health Organization’s 11-step handwashing process. Handwashing in the workplace was observed, in a pre- and post-test design, with microbiological swabs also taken. There was an increase in time spent on handwashing that was noticeable across all three groups (p < 0.05) with the highest in the VR group (50.16 ± 26.04 sec.). The mean number of handwashing steps increased across all groups, and the highest increase (8.91 ± 1.49 steps) was observed in the VR group. A statistically significant difference was observed among all groups regarding correctly performed steps, and the VR group showed the highest number of steps (p < 0.01). These findings suggest that VR-based training has value for enhancing hand hygiene practices in foodservice settings.

Prison regulators across scales hold potential to illuminate harms of imprisonment and influence alternatives, yet criminologists rarely engage with these mechanisms. We analyse prisoners’ participatory roles in the ‘transformative’ Corston Report (2007) and The Corston Report 10 Years On (Women in Prison, 2017), using actor-network-theory to guide document analysis. Corston called for a radically different, woman-centred approach to criminal justice, but women’s voices were often peripheral, or they were constructed as ‘pathetic’. There is unrealised potential for regulatory efforts to network imprisoned women and their families with other regulators, deepening understanding of problems connected to prisons, for broader social benefit.

Research suggests that commercial weight management services are efficacious in helping people manage their body mass, but they typically only include education and advice on physical activity. The objective of this analysis was to assess 3- and 12-month body mass after attendance at a community-based weight management programme delivered by a commercial slimming group, which included the provision of tailored physical activity sessions by a local leisure trust between January 2009 and November 2014. Methods: After institutional ethical approval and participants giving informed consent, a retrospective analysis of a 12-week multi-component intervention, tier 2 community weight management service for adults in Wigan, North West England, United Kingdom, was undertaken. Participants’ (n = 8514) mean ± SD age was 47.4 ± 14.3 years and starting body mass was 86.7 ± 14.3 kg. The main outcome measure was body mass (kg) at 0 months (baseline), 3 months (immediately post intervention) and 12 months. Significant differences in body mass were ascertained if p < 0.05 using repeated measures ANOVA with Bonferroni post hoc test, with effect sizes calculated using partial eta squared. To confirm and account for missing data, the Last Observation Carried Forward (LOCF) approach was used. Results: Repeated measures ANOVA showed a significant effect of time (p < 0.01, ηp2 = 0.36). Post hoc tests revealed there was a significant reduction in body mass from baseline to 3 months (86.7 ± 14.3 kg vs. 81.2 ± 13.6 kg) and baseline to 12 months (79.7 ± 14.0 kg). The difference between 3 months and 12 months was also significant. LOCF confirmed a significant effect of time (p < 0.01, ηp2 = 0.42), with all previously highlighted significant differences remaining. Conclusions: Significant reductions in body mass were reported at 3 and 12 months, providing evidence for the efficacy of the community weight management programme that included tailored physical activity opportunities for participants. Whilst comparisons to a resting control group cannot be made, partnerships between commercial slimming groups and local leisure providers should be encouraged and explored nationally.

This is the protocol for a Campbell systematic review. This review's objectives are to find out (in relation to health and/or social care): (1) What is known about the outcomes and impact of completing (or not completing) a professional doctorate in health and/or social care on the individual professional? (2) What is known about the outcome and impact of completing (or not completing) a professional doctorate in health and/or social care on the employing organisation? (3) What is known about the outcome and impact of completing (or not completing) a professional doctorate in health and/or social care on the profession? (4) What is known about the outcome and impact of completing (or not completing) a professional doctorate in health and/or social care on service users and the wider society? (5) How do we use the findings from this review to inform educators, higher education institutions, professionals, investors in employing organisations and policymakers? (6) What further research will be needed to answer any knowledge gaps or recommendations? (7) Where possible, we will identify and report on any demographic data and discuss their relevance to the impact and outcomes from professional doctorates.

This small-scale qualitative study explores how children participate in their own child protection/child in need planning within a statutory setting in England. Their experience of participation and the impact that voicing their wishes and feelings had on outcomes are highlighted and discussed against a background of conflicting discourses of statutory safeguarding and empowering participation, barriers to engagement and hearing the child’s voice.