Health Expectations
○ Wiley
Preprints posted in the last 30 days, ranked by how well they match Health Expectations's content profile, based on 12 papers previously published here. The average preprint has a 0.02% match score for this journal, so anything above that is already an above-average fit.
White, C.; Price, E.; Walker, L.; Bell, J.; Revell, L.
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Social prescribing has assumed increasing dominance in policy and practice internationally, including in the UK, where it has an increasing role in addressing social needs such as isolation, and social determinants of ill health. Although General Practitioners are perceived as key referral sources, social workers in one locality were found to play a significant role in referral. This suggests that the social work role in this context has been under recognised and under explored. This study sought to explore social workers' perceptions and experiences of social prescribing through an online survey conducted from January to June 2022. All UK social workers were eligible to participate, regardless of whether they had made referrals. A total of 105 responses were collected from all UK nations. Data was analysed using inductive thematic analysis. Four key themes were generated: contended and contested boundaries; complementary spaces; delineated spaces of simplicity and complexity; social work under threat. Participants recognised that social prescribing could provide valuable client support and could be a useful resource for social workers. However, they also expressed concerns about overlapping professional boundaries and the potential for social prescribing to encroach on social work, perceiving it as most appropriate for the delivery of support to those with 'low level' needs.
Varela-Mato, V.; Ngina, D.; Orton, E.; Barnes, J.
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Background Parenting practices shape children's emotional, social, and cognitive developmental wellbeing. Yet, many families face complex challenges that increase the risk of poor outcomes and demand on social care. The Sutton Parenting Offer (SPO) is a universal, peer-led parenting offer that provides early, non-stigmatising support to families with children aged 0-25 years. It combines evidence-based programmes with informal workshops and peer networks delivered through Family Hubs. This present study is an evaluation protocol of the parenting offer. Aim This evaluation aims to explore how, why, and in what contexts SPO supports families in engaging, sustaining positive change, and generating wider system value. Methods A mixed-methods realist evaluation approach will be used to evaluate SPO across four work packages: engagement pathways, early changes and peer-led ecosystems, long-term change, and system value for money. Data sources will include attendance data (anonymised service records), survey data (entry and exit), and qualitative data (dyad interviews, story circles, and stakeholder-value mapping workshops). The COM-B and the Theoretical Domains Framework (TDF) will guide the analysis of behavioural data. Quantitative data will be analysed descriptively and using paired parametric and non-parametric tests, while qualitative data will be analysed thematically following a realist-informed approach to refine context-mechanism-outcome (CMO) configurations. Discussion This protocol presents the first realist informed evaluation of a universal parenting program in a local authority setting. The evaluation will generate evidence on how, when and why a universal, community-based, and peer-led model such as the Sutton Parenting Offer engages families and generates change. The findings will be useful to inform future parenting service design and implementation in local contexts in England.
Mahdikhani, S.; Cleary, F.; Cummins, S.
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Objectives: Endometriosis affects approximately 10% of reproductive age women worldwide, yet care pathways remain fragmented and treatments have limitations. This study aimed to identify and categorize key stakeholders in endometriosis care in Ireland, assess their influence and interest in the digital health initiative, and identify drivers and barriers affecting uptake of innovative approaches to care. Methods: A virtual stakeholder mapping workshop was conducted with participants from healthcare, policy, education, technology, academia, and patient communities. Using a structured MS Teams Whiteboard, participants generated a stakeholder list, positioned stakeholders on an Influence-Interest Matrix, and provided qualitative insights on factors enabling or constraining engagement with digital health innovation. Results: Stakeholders were distributed across all four quadrants of the matrix. High-interest/high-influence stakeholders included the HSE, specialist centres, general practitioners, and the Endometriosis Association of Ireland. High-interest/low-influence groups comprised patients, families, and online communities, while policymakers, hospital managers, and the education sector were identified as high-influence but low-interest actors. Key drivers included strong patient advocacy, institutional support such as engagement from the HSE, and growing awareness of digital health tools. Major barriers encompassed prolonged diagnostic delays, resource constraints, gaps in clinical knowledge, technology anxiety, and challenges sustaining engagement. Conclusions: Stakeholder mapping provided an evidence-informed foundation for the VendoR project, revealing engagement gaps and leverage points critical for improving endometriosis care innovation. The findings highlight the need for intentional, well-resourced strategies that elevate patient voices, address systemic barriers, and ensure balanced representation, supporting the co-design, co-creation, and co-production of digital health interventions for sustainable, patient-centred care.
Murchie, P.; Adam, R.; Naqvi, S. A.; Ntessalean, M.
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BackgroundThe COVID-19 pandemic significantly accelerated the adoption of telemedicine, but it also exposed gaps in effective remote clinical assessment, particularly for medically vulnerable patients in rural areas. The ORCHARD intervention aimed to address this by providing patients with a Medical Self-Assessment Box to enable self-reporting of vital signs during remote consultations. MethodsA single-centre randomised mixed-methods feasibility trial recruited medically vulnerable patients from a rural general practice in Northeast Scotland. Participants in intervention group received a home medical equipment box for use during telemedicine consultations over six months. Patients and GPs were interviewed and transcripts were analysed using Framework Analysis. ResultsTwelve (15%) of 82 eligible invited patients enrolled. Six each were allocated to intervention and control group. 50%(n=3)patients in intervention group used equipment in 45%(5 of 11)teleconsultations and rated it helpful in all 5 uses (100%). The intervention group had 18% fewer primary care contacts than controls. All remote consultations were by telephone. Framework Analysis of patient interviews identified facilitators such as ease of use, improved triage access, reassurance, and barriers related to GP non-engagement and written instructions. GP interviews identified clinical value in patient-generated readings, alongside concerns regarding workload and patient over-monitoring. ConclusionsHalf of intervention participants used the medical-equipment box during remote consultations, all finding it useful, though frequency of use varied among particpants.A randomised controlled trial to evaluate the effectiveness of the Medical Self-Assessment Box for optimising remote consulting in medically vulnerable rural patients is feasible.Prior to a definitive trial refinements are recommended to patient labelling, GP engagement, and training materials.
Davidson, S. R.; Browne, S.; Giles, L.; Gillham, K.; Haskins, R.; Campbell, E.
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Abstract Background Musculoskeletal conditions, such as back pain and osteoarthritis, are common and disabling disorders. Musculoskeletal conditions are closely related to chronic disease risk factors like smoking/vaping, poor nutrition, alcohol misuse and physical inactivity and impact a person's risk of falling (SNAPF). Preventive care for SNAPF risks is often overlooked. Online delivery of preventive care may increase the provision of this care. We aimed to assess if an online tool for SNAPF risks would be used by and acceptable to patients waiting for an orthopaedic consultation. Methods We completed a multi-method study to test an online health risk self-assessment tool. A random sample of 300 people on the orthopaedic outpatient waiting list aged 18-64 years were sent the tool in batches of 20-50. The tool assessed SNAPF risks and provided feedback against national guidelines. After each batch, we completed feedback interviews with participants to assess acceptability and updated the tool. We summarised quantitative data using descriptive statistics and qualitative data using thematic analysis. Results Of the 300 participants sent the tool, 51.3% were female, 8.6% identified as Aboriginal and/or Torres Strait Islander, with a mean (SD) age of 52.0 years (11.2). There were 170 participants (59.2%) who completed the tool, 117 who did not complete it, and 13 participants who were excluded from analysis because they did not receive the SMS. We conducted 184 feedback interviews, including 125 'completers' and 59 'non-completers'. The percentage of participants who felt that SMS was an appropriate way to receive the tool was 84.7% of 'completers' and 50% of 'non-completers'. The two most common reasons for not completing the tool were due to perceived risk (13/59, 22.0%), and the SMS was received at an inconvenient time (11/59, 18.6%). Qualitative data from the feedback interviews captured three enablers: i) design, ii) high importance, and iii) engagement with health service, along with four barriers: i) design, ii) risk, iii) relevance, and iv) engagement with health service. Conclusion Our study found that an online health risk self-assessment tool appears to be an acceptable way to assess chronic disease and falls risk factors for people on an orthopaedic waitlist.
Sajnani, N.; Foster, M. W.; Oshodi, Y.; Sodimu, K. A.; Kolnik, M.; Pokorn, M.; Simpson, N.; Shaw, T.; Willmoth, S.; Marino, M.; Trinder, L.; Akisanya, E.; Onyekachi, E.; Bahr, E.; Blanchette, V.; Assistant, R.; Bolt, E.; Gong, Q.; Fenning, H. M.; Komolafe, D. O.; Murden, R.; Omuku, N.; Rowe, C.; Sanhueza, C.; Steer, T.; Trupp, M. D.; White, N.; Wu, Y.
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ObjectiveThis study investigated how hospital murals influence the experiences of patients, healthcare staff, and visitors across four sites. BackgroundEvidence shows that visual art in healthcare settings can improve well-being but few studies focus specifically on murals or compare their effects across cultural contexts. The Hospital Murals Evaluation project addresses this gap through an investigation of murals in hospitals in Nigeria, Slovenia, the United Kingdom, and the United States. MethodsUsing a mixed methods cross-sectional design, the study integrated surveys, interviews, and participatory photography. A total of 525 unique responses were collected from 229 patients (131 adult, 98 pediatric), 245 staff, 49 visitors, and 2 undisclosed. ResultsInterviews across all three participant groups (n=115) revealed themes of positive affects, perception of care, as well as stress or indifference. Surveys (n=327) showed moderate positive correlations between mural viewing and positive emotions among patients, and between mural exposure and well-being, positive emotions, social connection, and workplace belonging among staff in the UK and USA, with null findings for staff in Nigeria and Slovenia. Participatory photography (n=83) illustrated how murals conveyed comfort, though abstract or poorly placed murals sometimes evoked discomfort. Meta-inferences across the methods indicate that viewing murals were associated with positive emotions for patients and did not induce negative emotions for staff or visitors. ConclusionMurals act as health-promoting infrastructure that can enhance well-being, foster positive experiences, and signal intentions of care. The findings highlight the need for culturally attuned designs to create healthcare environments that nurture well-being.
van Lammeren, R.; Schalk, J.; van der Pas, S.; Bussemaker, J.
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In this article we argue that intersectoral collaboration is ultimately manifested at the neighbourhood level, where professionals from diverse sectors engage in a joint network to improve population health outcomes. To strengthen intersectoral collaboration in neighbourhoods with low SES, it is crucial to include the community voice, representing diverse citizens who must be heard and engaged in decision-making processes. This study aims to contribute to the literature of intersectoral collaboration by exploring how networks emerge and evolve over time. We focus on the development of the roles of citizens in the professional network and diverse sectoral involvement within a local network of the team called The Connectors, in a neighbourhood with low socioeconomic scores (SESs). Methodologically, we use a combination of social network analysis (SNA) and action research. Results show that the network expanded significantly over time, both in terms of the number of actors and the diversity of sectors involved. At both measurement points T1 and T2, the majority of collaborations occurred across sectoral boundaries. By the second measurement, the proportion of intersectoral relationships had increased. This indicates that as the network expanded, new collaborations were not confined to existing sectoral clusters but increasingly bridged different sectors. The dual role that citizens have taken on during the development of the network, serving both as community voice representatives and professionals, can be empowering, offering pathways for personal growth and career advancement. However, it also introduces complexity, as these individuals may experience tensions between personal commitments and professional responsibilities. To enable network development, policies should allow room beyond standard protocols and organizational silos, as well as provide sufficient time for relationships and structures to mature. Although network building is a gradual and complex process, once established, these networks can play a pivotal role in delivering integrated and responsive care.
Sprenger, M.; Crone, M.; Kiefte-de Jong, J. C.; Slagboom, M. N.
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While pregnancy intentions are increasingly recognised as complex and dynamic, unexpected pregnancies are often studied cross-sectionally, and a life course perspective is lacking. This study aimed to explore the salient themes and patterns in 1) the life course trajectories of individuals experiencing an unexpected pregnancy and 2) the transition surrounding an unexpected pregnancy. We conducted semi-structured qualitative interviews with 22 individuals (15 women and 7 men) experiencing unexpected pregnancies. Two interviews were held: during pregnancy and six months after childbirth. The respondents' life course trajectories were mapped using visual timelines and the transition was explored using Schlossberg's transition theory. Interviews were thematically analysed in an iterative process: applying open coding to three interviews followed by thematic coding and comparison of themes within and across life course trajectories. Life course trajectories varied considerably, distinguished by the absence or presence of critical life events, with patterns characterised by clustering life events within the domains of family, mental health or frequent residential mobility. The transition process of unexpected pregnancy was characterised by three patterns of adjustment - shift (instant adjustment), spark (triggered adjustment) and unfolding (ambiguous adjustment) - in which respectively, all life course trajectories, trajectories with clustering of life events and mainly stable trajectories were present. This study contributes to the literature through the unfolding pattern, showing that adjustment to unexpected pregnancy may be an ambiguous process that is not finished when the baby has arrived, especially if individuals have strong aspirations in light of a relatively stable life course.
Dani, R.; Dave, D.
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Global healthcare is targeting patient-centred care, as it leads to better health outcomes and higher level of patient satisfaction. Patient-centred communication, is an important part of patient-centred care because it focuses on involving patients in their care. Recent surveys both nationally and globally have shown that patients are not involved enough in their own healthcare decisions. This problem is especially common among the elderly with chronic conditions. This study aimed to describe patient-healthcare professional interactions, expectations, and satisfaction in physiotherapy within an understudied context, thereby providing important, specific data on ICE dynamics and satisfaction in the specific setting. Cross-sectional study of participants in scheduled consultations was conducted. Two government physiotherapy centres, seven private physiotherapy centres and two trust centres with physiotherapy facilities in Gujarat, India. 232 patients (from various public and private physiotherapy clinics) participated in the study. Patients' ideas, concerns, expectations (ICE) and satisfaction were explored. Almost 88% of patients reported their thoughts and explanations about their symptoms during the consultation. Most patients described not having any concerns about the diagnosis/treatment, and more than two-third of patients consulting PTs expected explanation for their symptoms. Almost 90% patients were satisfied with the consultation. The study revealed that while most patients conveyed their thoughts during consultations, very few expressed their concerns. Overall, patients were satisfied with their consultations.
Hassani, A.; Pecar, K.; Soliman, M.; Bunyon, P.; Ellinger, C.; Tulysewskid, G.; Croft, J.; Carillo, C.; Wewegama, G.; du Plessis-Schneider, S.; Estevez, J. J.
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Background Individuals experiencing or at risk of homelessness face substantial barriers to preventive eye care that are poorly addressed by standard service models. Interdisciplinary optometry-social work collaboration offers a rights-based approach to improving engagement and continuity of care. Methods A convergent mixed-methods study was conducted between February and August 2024 at a multidisciplinary community centre. Clients experiencing or at risk of homelessness received integrated optometry and social work assessment and were prioritised as high, medium, or low based on combined clinical and social risk. Social work follow-up was guided by the Triple Mandate and W-Questions framework. Quantitative data were summarised using mean (SD), median [IQR], or n (%). Qualitative case notes were analysed using content analysis with inductive coding and secondary review for consistency. Results A total of 165 clients had priority categories coded (high: 68; medium: 47; low: 154). Demographic data were available for 132 clients (60% male; mean age 49.5 years [SD 16]); 27% had not completed high school, 89% reported weekly income below AUD 1000, and 28% had vision impairment. Two hundred forty-five case-note entries were consolidated into 146 unique records. SMS (46%) and phone calls (38%) were the most documented contact methods, although only 21% of calls were answered; missed calls (13%) and disconnected numbers (7%) were common. Multi-modal contact was more frequently documented for higher-priority clients. Appointment assistance was the most recorded facilitator (71%), while rights-based supports, including interpreter and transport assistance, were infrequently documented (<=5%). Qualitative analysis identified unstable communication, reliance on informal supports, and service fragmentation as key influences on recall outcomes. Conclusion This study supports an interdisciplinary, rights-based optometry-social work model to address barriers to preventive eye care among people experiencing or at risk of homelessness. Embedding structured handovers and tiered recall processes within community-based services may strengthen continuity and accountability for high-priority clients. Future implementation should evaluate outcomes related to equity of reach, service integration, and sustained engagement in care.
Hughes, N.; Hogenboom, J.; Carter, R.; Norman, L.; Gouthamchand, V.; Lindner, O.; Connearn, E.; Lobo Gomes, A.; Sikora-Koperska, A.; Rosinska, M.; Pogoda, K.; Wiechno, P.; Jagodzinska-Mucha, P.; Lugowska, I.; Hanebaum, S.; Dekker, A.; van der Graaf, W.; Husson, O.; Wee, L.; Feltbower, R.; Stark, D.
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Background: Population-based cancer registers (PBCR) are important for monitoring trends in cancer epidemiology, facilitating the implementation of effective cancer services. Adolescents and Young Adult (AYA) with cancer are a patient group with a unique set of needs. The utility of PBCR in AYA is limited by the lack of AYA-specific data items. STRONG AYA, an international multidisciplinary consortium is addressing this through federated learning (FL) methodology and novel data visualisation concepts. A Core Outcome Set (COS) has been developed to measure outcomes of importance through clinical data and Patient Reported Outcomes (PROs). We describe how data from the Yorkshire Specialist Register of Cancer in Children and Young People (YSRCCYP), a PBCR in the UK is being used within STRONG AYA and how the subsequent analyses can guide patient consultations. Methods: Data from the YSRCCYP were imported into a Vantage 6 node, from which FL analyses are performed along with data provided by other consortium members. The results are extracted into the PROMPT software and integrated into patient electronic healthcare records. Results: Healthcare professionals can view the results of individual PROs at various time points and in comparison, to summary analyses carried out within the STRONG AYA infrastructure. Results can be filtered by age, disease, country and stage. Conclusion: We have demonstrated how a regional PBCR can contribute to a pan-European infrastructure and analyses viewed to enhance patient consultations. Such analyses have the potential to be used for research and policy-making, improving outcomes for AYA.
Bennett-Weston, A.; Maltby, J.; Khunti, K.; Leung, C.; Narwal, D.; Otoo, P.; Iyadi-Wilson, B.; Howick, J.
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Background Therapeutic empathy improves patient and practitioner outcomes, yet existing measures are often lengthy, conceptually inconsistent, and cannot be easily compared across respondent groups. Brief, universal measures (usable by patients, practitioners, students, and observers) are lacking. We therefore developed a universal single-item scale and conducted psychometric testing of the patient-reported version. Methods Following best-practice, we used a three-phase approach: (1) item development; (2) pre-testing the scale by obtaining expert panel feedback (n=9) and conducting cognitive interviews with stakeholders (n=35); and (3) scale validation in an international patient sample (n=521) assessing convergent, discriminant, and known-groups validity. Validation involved assessing correlations with the Consultation and Relational Empathy (CARE) measure and clinical neutrality measure, and by assessing differences in scores by patient ethnicity. Results We developed two versions (pictorial and text-based) of each scale. Expert feedback and cognitive interviews confirmed content and face validity. Pictorial and text-based versions showed high convergent validity with the CARE measure (r=0.761 and r=0.838, both p<0.001), and discriminant validity with a clinical neutrality measure (r=0.131 and r=0.139, p=0.003 and p=0.001, respectively). Correlations with the CARE measure remained high (r>0.70) and statistically significant (p<0.001) across patient gender, ethnicity, and practitioner type. Ethnic minority patients rated practitioner empathy lower than White patients (pictorial p=0.057; text-based p=0.033), demonstrating known-groups validity. Patients rated doctors' empathy higher than other healthcare practitioners' (p=0.001 for both pictorial and text-based); there were no significant differences in empathy scores by patient gender. Conclusions We developed the first universal single-item therapeutic empathy measure and demonstrated validity for the patient-reported versions. The scale is brief, accessible, and applicable to clinical practice, education, and research. Further research should validate practitioner-, student-, and observer-reported versions, and assess predictive and cross-cultural validity. This robust tool can support patient-reported routine measurement of therapeutic empathy and contribute to improving patient and practitioner outcomes.
Hawke, L. D.; Hou, J.; Upham, K.; van Kesteren, M. R.; Munro, C.; Hauer, S.; Sendanyoye, C.; Halsall, T.; Quilty, L.; Hamilton, C.; Barbic, S. P.; Wang, W.
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Background. People with lived/living experience of health conditions, as well as caregivers, are increasingly engaged in research. This study aimed to develop and pilot test a new tool measuring the impact of lived/living experience engagement on the research. The measure is called the Measure of Engagement Tool for Research and lived Experience (METRE). Method. We conducted a qualitative descriptive study among 28 people with lived/living experience and caregivers and 12 academic researchers to understand the impacts of engagement. Using the findings, we drafted the METRE. We pilot tested the METRE among 13 people with lived/living experience and caregivers and 10 academic researchers. Insights were used to refine the scale. Results. Qualitatively, participants identified multiple domains of impact of engagement on research, which guided scale development. Pilot testing of the draft METRE revealed it being straightforward to complete, providing a thorough evaluation of the impact of engagement. However, some areas of improvement were recommended. The draft items showed acceptable preliminary performance. Conclusions. An assessment tool is now available to assess the impact of lived/living experience engagement on the research. Additional research is required to evaluate its psychometric properties. Tools to evaluate the impact of engagement on research will help advance the science of engagement and support engaged research teams in their work.
Le Quere, D.; Verroul, M.; Bouvard, M.; Brault Galland, E.; Dubernard, G.; Philip, C.-A.; Haesebaert, J.; Brulport, A.
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Objective: To investigate, in the context of endometriosis management, the perceptions of patients and healthcare professionals regarding hormonal treatment options. Design: Qualitative study using semi-structured focus group methodology. Setting: University hospitals and academic research center. Subject(s): Patients with endometriosis (n=20) and healthcare professionals (n=13) involved in their care. Intervention(s): Not applicable Main Outcome Measure(s): Focus group topics investigated representations on the concept of treatment effectiveness, emotion associated to this medical management and the perceived impact of these therapies on patient-professional and patient-environment relationship. Result(s): We highlighted a discrepancy between patients and doctors regarding the concept of efficacy of hormonal therapies. Long-term amenorrhea is the main priority for healthcare professionals, whereas pain reduction remains the immediate wait for patients. Interviewed patients reported a lack of listening and empathy, a shared-information deficit as regards treatment options and side-effects and a need to involved partner and family in care. These factors contribute to communication issues between patients and doctors and appear to contribute to significant mental burden on both sides. Among healthcare professionals, mental burden appears to arise primarily from the resource-intensive demands of endometriosis management, whereas among patients it is driven more by the need to take an active role in their own care to compensate for insufficient information provided by physicians. Conclusion: In this study, we highlighted the ambiguities surrounding the concept of therapeutic efficacy of hormonal therapies and collected several factors to try to improve shared-decision-making process in the management of endometriosis. This is designed to help us create a shared decision-making tool in the near future.
Sathe, S. S.; Porter, N.; Miller, C.; Rockwell, M.
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Abstract Background People with disabilities use technology, like search engines, to seek health information online. This health information includes information on coronavirus disease, or COVID-19. COVID-19 remains a public health concern. Research shows that people with disabilities encounter frustrations, or "pain points," when seeking online information, but little is known about these specific pain points and who encounters them. Objective The goals of this study are to determine pain points for people with disabilities who seek health information online, and to assess how pain points impact the experience of technology use and information seeking. Methods Ten participants recruited from a prior quantitative survey completed the concurrent think-aloud study over a month-long period. Participants completed four online search tasks and narrated their experiences in real-time while doing so. Transcripts were stored in Taguette; thematic analysis was performed on these transcripts. Findings Participants were predominantly white, with three identifying as Asian. All ten participants reported having disabilities. Participants with attention deficit hyperactivity disorder (ADHD) reported distracting webpage layout, whereas participants with physical disabilities reported physical fatigue while navigating online information. All participants encountered AI-generated information; only one participant indicated trust in the AI-generated information. Other common sources of information included hospital and governmental webpages, peer-reviewed articles, and news and advertising results. News and advertising results were especially common with respect to search results for "COVID-19 vaccine." Themes identified included the following: accessibility/usability, AI-generated information, government/hospital and related sources of information, peer-reviewed articles, news and advertising, and sentiment and trust. Conclusions Information can be fatiguing, distracting, or otherwise difficult to navigate for people with diverse disabilities searching for COVID-19 related information online. Further work should incorporate user feedback from people with disabilities when designing online content.
Pasin, C.; Jackson, S. S.; Thynne, L.-E.; McWade, B.; Westerman, T.; Ball, R.; Kavanagh, J.; O'Callaghan, S.; Ring, K.; Orkin, C.; Berner, A. M.
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ObjectivesTo estimate current, and 5- and 10-year projected, number of cases of cancer per year in transgender and gender diverse (TGD) people in England, overall and by tumour type, accounting for uptake of gender affirming care (GAC). DesignPopulation-based epidemiological modelling study using an age-stratified Monte Carlo simulations approach and the NORDPRED method for predictions. SettingModels estimating cancer case numbers for TGD people in England based on publicly available 2023 cancer surveillance data and survey-based 2025 GAC access, and predicted at 5 and 10 years hence. ParticipantsTGD people aged 15 years and above. Main outcome measuresPrimary cancer cases per year overall, by gender, age group, tumour type, and current and planned GAC. ResultsThe estimated TGD population size in England is 441547 (95% uncertainty interval (UI) 429207- 452890). Total cases per year of cancer in TGD people is expected to be 966 (95% UI 882-1069) excluding non-melanoma skin. Most cases are expected to occur in people aged 60-64. The top 5 expected cancers in TGD people are breast (19%, n = 187, 95% UI 149-241), colorectal (12%, n = 117, 95% UI 106-129), lung (11%, n = 108, 95% UI 96-122), melanoma (7.1%, n = 69, 95% UI 64-74) and urinary (6.2%, n = 60, 95% UI 54-67). Total cases of cancer in TGD people are estimated to be 1740 (95% UI 1584-1934) in 5 years and 2258 (95% UI 2066-2507) in 10 years (excluding non-melanoma skin). If TGD people were able to access their planned level of GAC, this would reduce these figures to 1555 (95% CI 1386-1766) and 2012 (95% CI 1797-2282) respectively. ConclusionsThis study provides prediction of cancer cases in TGD people in England, supporting the planning of service provision and training. This is vital, as with increasing disclosure, and long wait times for GAC, cancer cases in TGD people are predicted to increase. Summary BoxesO_ST_ABSWhat is already known on this topicC_ST_ABSThe annual number of cases of cancer in transgender and gender diverse (TGD) people in England is currently unknown as gender incongruence is not collected as part of the National Cancer Registration and Analysis Service. Some gender-affirming care (GAC) interventions are known to modulate cancer risk. Use of testosterone and chest reconstruction for transmasculine people is known to reduce their incidence of breast cancer compared to cisgender women. Use of oestradiol alongside medical or surgical androgen suppression has been shown to reduce the incidence of prostate cancer in transfeminine people while increasing their risk of breast cancer, compared to cisgender men. What this study addsThis study found that there are likely to be approximately 966 cases of cancer (excluding non-melanoma skin) in TGD people per year in the UK. Though total annual cases of cancer in TGD people are expected to be 2258 in 10 years, improved access to gender-affirming care could reduce total cases to 2012 (a 11% reduction). These figures provide additional justification for funding to improve access to GAC via the National Health Service (NHS), as well as for training on the oncological needs of this population.
McIlroy, S.; Bearne, L.; McCarter, A.; McPherson, C.; Chaplin, H.; Brighton, L. J.; Weinman, J.; Norton, S.
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Background: Lumbar spinal stenosis (LSS) can cause pain and severe walking limitation. Although surgery aims to improve walking, many patients do not achieve clinically meaningful gains. Rehabilitation can improve outcomes, yet existing programmes lack robust evidence and theoretical underpinning. This study aimed to (1) co-design a theory-informed rehabilitation programme to improve walking after LSS surgery, and (2) evaluate feasibility of conducting a future trial and acceptability of the intervention. Methods: A multi-methods study included intervention co-design followed by a single-arm feasibility study. Co-design used an adapted Experience-Based Co-Design approach with patients, carers, and healthcare professionals (n=39), integrating the Behaviour Change Wheel. This resulted in STructured Rehabilitation and InDividualised Exercise and Education (STRIDE), delivered over 12-week pre- and 12-weeks post-surgery, targeting knowledge, expectations, perceived control, physical capability, and fears. Adults aged [≥]50 years awaiting LSS surgery were recruited to a before-after feasibility study. Feasibility outcomes included recruitment and retention. Acceptability was assessed using the Theoretical Framework of Acceptability questionnaire (0-5 (high acceptability)) and focus groups. Clinical outcomes measured at baseline, post-prehabilitation, and post-rehabilitation included 6-minute walk distance (6MWD) and mean daily step count over 7 days. Results: Fifteen of 31 eligible participants were recruited (48%; mean age 70 years), with 80% retained to study end (2 decided against surgery, 1 unable to complete final assessment). Acceptability was high (median 5/5, IQR 0). Participants valued the personalised, supportive approach and reported improved motivation and preparation for surgery, though travel was burdensome. Small pre-operative and moderate-to-large post-operative improvements were observed in 6MWD (+49.9 m and +81.6 m) and daily step count (+868 and +1405 steps/day). Conclusions: This co-designed, physiotherapy-led, behaviour-change rehabilitation programme was acceptable to participants, with encouraging recruitment, retention, and signals of improved walking following LSS surgery. The findings support progression to a future trial.
Tan, X.; Danka, M. N.; Urbanski, S.; Kitsawat, P.; McElvaney, T. J.; Jundi, S.; Porter, L.; Gericke, C.
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Background: Lung cancer screening can reduce lung cancer mortality through early detection, but uptake of the NHS Targeted Lung Health Check (TLHC) programme remains low. Behaviourally informed invitation messages have been proposed as a low-cost approach to increase attendance, but evidence of their effectiveness in lung cancer screening is mixed. Few intervention studies used evidence-based behaviour change frameworks, and rarely tailored invitation strategies to empirically identified barriers and enablers. Methods: In an online experiment, 3,274 adults aged 55-74 years and with a history of smoking were randomised to see one of four behaviourally informed invitation messages or a control message. Participants then rated their intention to attend a TLHC appointment, and selected barriers and enablers to attending from a pre-defined list, which were classified according to the Theoretical Domains Framework. Invitation messages were mapped to Behaviour Change Techniques using the Theory and Techniques Tool. Message conditions were compared on intention to attend TLHC using bootstrapped ANOVA followed by pairwise comparisons. Exploratory counterfactual mediation analyses examined the role of fear in intention to attend. Results: Behaviourally informed invitation messages did not meaningfully increase intention to attend TLHC compared with the control message. While a GP-endorsed message showed a small potential benefit relative to the other conditions, this finding was not robust after adjustment for multiple comparisons. Participants most frequently reported barriers related to Emotion (particularly fear), Social Influence, and Knowledge, while Beliefs about Consequences emerged as the primary enabler of attendance. Only around half of reported barriers and enablers were addressed by the invitation messages. Exploratory analyses found that fear was associated with lower intention to attend a TLHC appointment, yet none of the behaviourally informed messages appeared to reduce fear compared to the control message. Conclusions: Improving lung cancer screening uptake will likely require invitation messages that directly address emotional concerns, particularly fear, alongside credible recommendations. These findings highlight the importance of systematically aligning invitation message content with empirically identified behavioural influences when designing scalable interventions to improve lung cancer screening uptake.
Phillips, R.; Wood, F.; Torrens-Burton, A.; Glennan, C.; Sellars, P.; Lowe, S.; Caffoor, A.; Hallingberg, B.; Gillespie, D.; Shepherd, V.; Poortinga, W.; Wahl-Jorgensen, K.; Williams, D.
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Objectives Concerns about COVID-19 were a key driver of infection-prevention behaviour during the pandemic. The aim of this study was to gain an in-depth longitudinal understanding of the type and frequency of concerns experienced throughout the first two years of the COVID-19 pandemic. Design Content analysis of qualitative descriptions provided in a prospective longitudinal online survey as part of the COVID-19 UK Public Experiences (COPE) Study. Method At baseline (March/April 2020), when the UK entered its first national lockdown, 11,113 adults completed the COPE survey. Follow-up surveys were conducted at 3, 12, 18 and 24 months. Participants were recruited via the HealthWise Wales research registry and social media. Baseline surveys collected demographic and health data, and all waves included an open-ended question about COVID-19 concerns. Content analysis was used to identify the type and frequency of concerns at each time point. Results A total of 41,564 open-text responses were coded into six categories: personal harm (n=16,353), harm to others (n=11,464), social/economic impact (n=6,433), preventing transmission (n=4,843), government/media (n=1,048), and general concerns (n=1,423). The proportion of respondents reporting any concern declined from 75.3% at baseline to 65.8% at 24 months. Over time, concerns about personal harm increased (baseline 41.8% vs. 24-months 52.7%) whereas concerns about harm to others decreased (baseline 48.5% vs. 24-months 28.6%). Concerns about harm were also expressed in relation to clinical vulnerability, lack of trust in government/media, and perceived lack of adherence by others. These were balanced against concerns about wider social and economic impacts of restrictions. Conclusions Public concerns about COVID-19 evolved substantially over the first two years of the pandemic, reflecting changing perceptions of risk and responsibility. Monitoring concerns longitudinally is vital to help guide effective communication and behavioural interventions during future pandemics.
Adeyemo, S. C.; Awodele, K.; Waliu, A. T.; Fasanu, A. O.; Akinbowale, B. T.; Adeniyi, V. A.; Folami, R.; Akinwale, O. D.; Falade, J.; Olabode, E. D.
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Background Conventionally, infertility has been regarded as primarily a female issue, leading to misconceptions, stigma, and underrepresentation of male infertility in healthcare discussions. This study assessed the knowledge, attitude and perception of Undergraduates towards male infertility in Osun State University. Methods A descriptive cross-sectional design was employed to select 300 undergraduates via multistage sampling. Qualitative data were collected using a focus group discussion guide covering the knowledge, attitude and perception, while quantitative data were collected using a self-administered questionnaire covering socio-demographic characteristics, knowledge, attitude and perception towards male infertility. Qualitative analysis was performed using NVivo software, while IBM SPSS Statistics version 27 was used for the quantitative analysis, with thematic analysis and chi-square tests to determine the association between variables (significance at p < 0.05). Results Respondents were predominantly females (64.0%) with a mean age of 20.99 {+/-} 2.31 years. Overall knowledge was low (47.7%), while more than half had a negative attitude (52.3%). Significant predictors of attitude include faculty (0.049), level (p=0.031), and formal education on male infertility (p=0.007). Conclusion Students demonstrated a poor understanding of male infertility, and their attitudes remain influenced by cultural norms surrounding marriage, masculinity, and gender roles. Hence, the need to foster open dialogues, promote gender-inclusive narratives, and strengthen healthcare support systems.