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1.	Abuloha, Sumaya, et al. (author) A Review of the Cost-Effectiveness Evidence for FDA-Approved Cell and Gene Therapies. 2024 In: Human Gene Therapy. - 1043-0342. ; 35:11-12, s. 365-373 Journal article (peer-reviewed)abstract Cell and gene therapy innovations have provided several significant breakthroughs in recent years. However, cell and gene therapies often come with a high upfront cost, raising questions about patient access, affordability, and long-term value. This study reviewed cost-effectiveness analysis studies that have attempted to assess the long-term value of FDA-approved cell and gene therapies. Two reviewers independently searched the Tufts Medical Center Cost-Effectiveness Analysis Registry to identify all studies for FDA-approved cell and gene therapies per January 2023. A data extraction template was used to summarize the evidence in terms of the incremental cost-effectiveness ratio expressed as the cost per Quality-Adjusted Life-Year (QALY) and essential modeling assumptions, combined with a template to extract the adherence to the Consolidated Health Economic Evaluation Reporting Standards (CHEERS) checklist. The review identified 26 CEA studies for seven cell and gene therapies. Around half of the base-case cost-effectiveness results indicated that the cost per QALY was below $100,000-$150,000, often used as a threshold for reasonable cost-effectiveness in the US. However, the results varied substantially across studies for the same treatment, ranging from being considered very cost-effective to far from cost-effective. Most models were based on data from single-arm trials with relatively short follow-ups, and different long-term extrapolations between studies caused large differences in the modeled cost-effectiveness results. In sum, this review showed that despite the high upfront costs, many cell and gene therapies have cost-effectiveness evidence that can support long-term value. Nonetheless, substantial uncertainty regarding long-term value exists because so much of the modeling results are driven by uncertain extrapolations beyond the clinical trial data.
2.	Agerholm, Janne, et al. (author) The organisation and responsibility for care for older people in Denmark, Finland and Sweden : outline and comparison of care systems 2024 In: Scandinavian Journal of Public Health. - : SAGE Publications. - 1403-4948 .- 1651-1905. ; 52:2, s. 119-122 Journal article (peer-reviewed)abstract Aim: To outline the organisation and responsibility for health and social care provided to older people in Denmark, Finland and Sweden.Methods: Non-quantifiable data on the care systems were collated from the literature and expert consultations. The responsibilities for primary healthcare, specialised healthcare, prevention and health promotion, rehabilitation, and social care were presented in relation to policy guidance, funding and organisation.Results: In all three countries, the state issues policy and to some extent co-funds the largely decentralised systems; in Denmark and Sweden the regions and municipalities organise the provision of care services – a system that is also about to be implemented in Finland to improve care coordination and make access more equal. Care for older citizens focuses to a large extent on enabling them to live independently in their own homes.Conclusions: Decentralised care systems are challenged by considerable local variations, possibly jeopardising care equity. State-level decision and policy makers need to be aware of these challenges and monitor developments to prevent further health and social care disparities in the ageing population.
3.	Ahlstedt, Carina, 1969- (author) Registered nurses' work motivation and intention to stay at the workplace 2024 Doctoral thesis (other academic/artistic)abstract There is currently a shortage of registered nurses (RNs) and high turnover of RNs, both nationally and internationally. Work motivation is an important part of a healthy work environment and something we need to know more about from an RN perspective.The overarching aim of this thesis was to enhance our understanding of the organisational and social workplace factors that contribute to an attractive environment for RNs, by exploring factors associated with work motivation. Four research questions were posed. (i) What factors create the conditions for motivation in RNs’ daily work? (ii) What role does social support in the workplace play in RNs’ work motivation? (iii) What role does the opportunity to work with relevant tasks play in RNs’ work motivation? (iv) Are there differences between healthcare settings regarding RNs’ social support, illegitimate tasks, and associations with work motivation? Four empirical studies were performed to answer these questions. Two were qualitative studies based on an ethnographic approach and two were quantitative cross-sectional studies based on a stratified national sample of RNs. The results of the qualitative studies indicate that crucial factors for RNs' work motivation include a friendly and permissive atmosphere in daily work. Visible progress and receiving feedback from the work itself also positively contributed to motivation. Additionally, RNs' opportunities to learn and support each other through ongoing communication during daily work tended to have a positive impact on work motivation. Effective collaboration between physicians and RNs with mutual respect, understanding of each other's competencies, and creating an environment where RNs could seek clarification were also central to work motivation. The quantitative studies revealed that the opportunity for social support from the immediate manager or co-workers was significant for dimensions related to RNs’ work motivation and the willingness to stay in the workplace. The associations differed in strength between healthcare settings. Furthermore, the results indicated that a factor in RNs' work motivation was the ability to work with tasks perceived as relevant, not illegitimate. However, the results highlighted that a significant portion of RNs performed illegitimate tasks, and that illegitimate tasks were more prevalent for RNs in home healthcare than those in primary care and hospitals. This is something to consider as more complex care is being conducted outside of hospitals. The thesis adds new knowledge that can be useful to the development of attractive workplaces, which could contribute to more RNs choosing to remain in their position for a longer period.
4.	Ahmadi, Zainab, et al. (author) Smoking and home oxygen therapy : a review and consensus statement from a multidisciplinary Swedish taskforce 2024 In: European Respiratory Review. - : European Respiratory Society. - 0905-9180 .- 1600-0617. ; 33:171 Research review (peer-reviewed)abstract Background: Home oxygen therapy (HOT) improves survival in patients with hypoxaemic chronic respiratory disease. Most patients evaluated for HOT are former or active smokers. Oxygen accelerates combustion and smoking may increase the risk of burn injuries and fire hazards; therefore, it is considered a contraindication for HOT in many countries. However, there is variability in the practices and policies regarding this matter. This multidisciplinary Swedish taskforce aimed to review the potential benefits and risks of smoking in relation to HOT, including medical, practical, legal and ethical considerations.Methods: The taskforce of the Swedish Respiratory Society comprises 15 members across respiratory medicine, nursing, medical law and ethics. HOT effectiveness and adverse risks related to smoking, as well as practical, legal and ethical considerations, were reviewed, resulting in five general questions and four PICO (population–intervention–comparator–outcome) questions. The strength of each recommendation was rated according to the GRADE (grading of recommendation assessment, development and evaluation) methodology.Results: General questions about the practical, legal and ethical aspects of HOT were discussed and summarised in the document. The PICO questions resulted in recommendations about assessment, management and follow-up of smoking when considering HOT, if HOT should be offered to people that meet the eligibility criteria but who continue to smoke, if a specific length of time of smoking cessation should be considered before assessing eligibility for HOT, and identification of areas for further research.Conclusions: Multiple factors need to be considered in the benefit/risk evaluation of HOT in active smokers. A systematic approach is suggested to guide healthcare professionals in evaluating HOT in relation to smoking.
5.	Ahmed, Anisuddin, et al. (author) Measuring the effectiveness of an integrated intervention package to improve the level of infection prevention and control : a multi-centre study in Bangladesh 2024 In: Journal of Hospital Infection. - : Elsevier. - 0195-6701 .- 1532-2939. ; 145, s. 22-33 Journal article (peer-reviewed)abstract Background: Infection prevention and control (IPC) is a critical component of delivering safe, effective and high -quality healthcare services, and eliminating avoidable healthcare -associated infections (HAIs) in health facilities, predominantly in populationdense settings such as Bangladesh.Aim: Our study aimed to assess the effect of an integrated intervention package in improving the IPC level of the health facilities in Bangladesh.Methods: We conducted a pre -post intervention study in six district hospitals (DHs) and 13 Upazila Health Complexes (UHCs) in the six districts of Bangladesh. Baseline and endline assessments were conducted between March and December 2021 using the adapted World Health Organization Infection Prevention and Control Assessment Framework (WHO-IPCAF) tool. The IPCAF score, ranging from 0-800, was calculated by adding the scores of eight components, and the IPC promotion and practice level was categorized as Inadequate (0 -200), Basic (201-400), Intermediate (401-600) and Advanced (601-800). The integrated intervention package including IPC committee formation, healthcare provider training, logistics provision, necessary guidelines distribution, triage/flu corners establishment, and infrastructure development was implemented in all facilities.Results: The average IPCAF score across all the facilities showed a significant increase from 16% (95% CI: 11.5-20.65%) to 54% (95% CI: 51.4-57.1%). Overall, the IPCAF score increased by 34 percentage points (P<0.001) in DHs and 40 percentage points (P<0.001) in UHCs. Following the intervention, 12 (three DHs, nine UHCs) of 19 facilities progressed from inadequate to intermediate, and another three DHs upgraded from basic to intermediate in terms of IPC level.Conclusion: The integrated intervention package improved IPCAF score in all facilities.
6.	Ahmed Pihlgren, Sara, et al. (author) Exploring healthcare workers' experiences of a simple intervention to reduce their intrusive memories of psychological trauma: an interpretative phenomenological analysis 2024 In: EUROPEAN JOURNAL OF PSYCHOTRAUMATOLOGY. - : Taylor & Francis. - 2000-8198 .- 2000-8066. ; 15:1 Journal article (peer-reviewed)abstract Background: Many healthcare workers (HCWs) endured psychologically traumatic events at work during the coronavirus disease 2019 (COVID-19) pandemic. For some, these events are re-experienced as unwanted, recurrent, and distressing intrusive memories. Simple psychological support measures are needed to reduce such symptoms of post-traumatic stress in this population. A novel intervention to target intrusive memories, called an imagery-competing task intervention (ICTI), has been developed from the laboratory. The intervention includes a brief memory reminder cue, then a visuospatial task (Tetris (R) gameplay using mental rotation instructions for approximately 20 min) thought to interfere with the traumatic memory image and reduce its intrusiveness. The intervention has been adapted and evaluated in a randomized controlled trial (RCT) with Swedish HCWs (ClinicalTrials.gov identifier: NCT04460014).Objective: We aimed to explore how HCWs who worked during the COVID-19 pandemic experienced the use of a brief intervention to reduce their intrusive memories of work-related trauma.Method: Interpretative phenomenological analysis was used for in-depth understanding of the lived experiences of HCWs who used the intervention. Seven participants from the RCT were interviewed by an independent researcher without prior knowledge of the intervention. Interviews were conducted via telephone and transcribed verbatim.Results: Four general themes were generated: 'Triggers and troublesome images', 'Five Ws regarding support - what, when, why, by/with who, for whom', 'Receiving it, believing it, and doing it' and 'The intervention - a different kind of help'; the last two included two subthemes each. The results reflect participants' similarities and differences in their lived experiences of intrusive memories, support measures, and intervention impressions and effects.Conclusion: HCWs' experiences of the novel ICTI reflect a promising appraisal of the intervention as a potential help measure for reducing intrusive memories after trauma, and gives us a detailed understanding of HCWs' needs, with suggestions for its adaption for future implementation.Trial registration: ClinicalTrials.gov identifier: NCT04460014. Many healthcare workers experience images or 'flashbacks' of traumatic experiences from their work during the COVID-19 pandemic.To ensure that individual needs are met, there is a need to tailor and refine current psychological support measures and their use for healthcare workers.The imagery-competing task intervention was perceived as acceptable, indicating its potential utility as a help measure to reduce intrusive memories after trauma. Antecedentes: Los trabajadores de la salud (HCW, por sus siglas en ingles) sufrieron eventos psicologicamente traumaticos en el trabajo durante la pandemia por COVID-19. Para algunos, estos acontecimientos se vuelven a experimentar como recuerdos intrusivos no deseados, recurrentes y angustiosos. Se necesitan medidas simples de apoyo psicologico para reducir estos sintomas de estres postraumatico en esta poblacion. En el laboratorio se ha desarrollado una nueva intervencion para abordar los recuerdos intrusivos, conocida como Intervencion de Tareas Competitivas de Imagenes (ICTI, por sus siglas en ingles). La intervencion incluye una breve senal de recordatorio de la memoria, luego una tarea visoespacial (juego de Tetris (R) que utiliza instrucciones de rotacion mental durante aproximadamente 20 minutos) que se cree que interfiere con la imagen de la memoria traumatica y reduce su intrusion. La intervencion se ha adaptado y evaluado recientemente en un ECA (ensayo controlado aleatorizado) con trabajadores sanitarios suecos (identificador de ClinicalTrials.gov: NCT04460014). Aqui nuestro objetivo es explorar como los participantes del ECA experimentaron la nueva intervencion.Objetivo: Explorar como los trabajadores sanitarios que trabajaron durante la pandemia por COVID-19 experimentaron el uso de una intervencion breve para reducir sus recuerdos intrusivos del trauma relacionado con el trabajo.Metodo: Se utilizo un analisis fenomenologico interpretativo para comprender en profundidad las experiencias vividas por los trabajadores sanitarios que utilizaron la intervencion. Siete participantes del ECA fueron entrevistados por un investigador independiente sin conocimiento previo de la intervencion. Las entrevistas se realizaron por telefono y se transcribieron palabra por palabra.Resultados: Se generaron cuatro temas generales, 'Desencadenantes e imagenes problematicas', 'Cinco preguntas sobre el apoyo: que, cuando, por que, por/con quien, para quien', 'Recibirlo, creerlo y hacerlo' y 'La intervencion. - una ayuda diferente', los dos ultimos incluian dos subtemas cada uno. Los resultados reflejan similitudes y diferencias de los participantes en sus experiencias vividas de recuerdos intrusivos, medidas de apoyo e impresiones y efectos de la intervencion.Conclusion: Las experiencias de los trabajadores sanitarios con el nuevo ICTI reflejan una evaluacion prometedora de la intervencion como una posible medida de ayuda para reducir los recuerdos intrusivos despues del trauma, y nos brinda una comprension detallada de las necesidades de los trabajadores sanitarios, con sugerencias sobre como adaptarse para una implementacion futura.
7.	Al Adhami, Maissa, Doctoral candidate, 1972-, et al. (author) Can extended health communication improve newly settled refugees' health literacy? A quasi-experimental study from Sweden 2024 In: Health Promotion International. - : Oxford University Press. - 0957-4824 .- 1460-2245. ; 39:2 Journal article (peer-reviewed)abstract Structural and contextual factors such as limited work and housing opportunities negatively affect the health and well-being of newly settled refugee migrants in receiving high-income countries. Health promotion initiatives aiming at strengthening health and integration have been tried out within the Swedish Introduction program for refugee migrants. However, longitudinal evaluations of these interventions are rare. The aim of the current study was to compare the effectiveness of a regular and an extended civic orientation course with added health communication and examine whether the latter would improve self-rated health and psychological well-being, health literacy and social capital among newly settled refugee migrants in Sweden. Pre- and post-assessment questionnaires were collected from the intervention group receiving the extended course (n = 143) and a control group receiving the regular course (n = 173). Linear mixed models and chi-square analyses showed a significant increase with a small effect size (0.21) in health literacy in the intervention group. However, there were no significant changes in emotional and practical support, general self-rated health or psychological well-being. The findings indicate that added health communication provided embedded in the civic orientation course can increase health literacy. However, further longitudinal studies are needed to confirm the sustainability of the observed effect and examine whether these short-term improvements in health literacy translate to long-term advances in health and integration.
8.	Alrawahi, S, et al. (author) Stress and job satisfaction among medical laboratory professionals in Oman: A cross-sectional study 2024 In: Heliyon. - 2405-8440. ; 10:3, s. e25456- Journal article (peer-reviewed)
9.	Andersén, Åsa, 1975-, et al. (author) Healthcare professionals' perceptions of the contributions of rehabilitation coordinators to patients in Swedish psychiatric care : a qualitative descriptive study 2024 In: BMC Psychiatry. - : BioMed Central (BMC). - 1471-244X. ; 24:1 Journal article (peer-reviewed)abstract Background: Rehabilitation coordinators have gradually been introduced into Swedish psychiatric care to support individuals on sick leave to return-to-work or enter work.AimTo explore healthcare professionals' perspectives on the contributions a rehabilitation coordinator can make to patients in psychiatric care.Materials and methods: A descriptive qualitative design was used, and data were collected through interviews. Twelve healthcare professionals in psychiatric care participated in individual semi-structured interviews. Data were analysed using thematic analysis.Results: An overarching theme evolved: "The rehabilitation coordinator promotes security and reduces stress in the vocational rehabilitation process", based on two themes: (1) "Adaptations and support based on the patient's needs" and (2) "Rehabilitation coordinator efforts as relevant for care". The themes, in turn, consist of six subthemes.Conclusions: This study showed that healthcare professionals perceived employment as important for patients' health and well-being. Therefore, the rehabilitation coordination efforts were not only seen as beneficial for addressing patients' challenges and needs in managing the vocational rehabilitation process but also as an integral part of the patient's care.
10.	Andersson, Ann-Christine, 1968- (author) Quality improvement development in Swedish healthcare and welfare services 2024 In: International Journal of Lean Six Sigma. - : Emerald Group Publishing Limited. - 2040-4166 .- 2040-4174. Journal article (peer-reviewed)abstract Purpose: Quality improvement has developed and spread, and today, all Swedish Regions emphasize that their strategies are based on systematic improvement. This paper aims to describe and illuminate the development of Quality Improvement (QI) in Swedish healthcare and welfare organizations by using publications in a Swedish context.Design/methodology/approach: The overview synthesis is inspired by a scoping literature review approach of relevant literature. All publications relevant to Swedish healthcare and welfare settings between 1992 until 2020 were included.Findings: In all, 213 papers, 29 books and chapters and 34 dissertations related to QI and research in Swedish healthcare and welfare context were identified. From 2011 to 2020, the publication rate increased rapidly. Six different focus areas emerged: systematic and value-creating improvement work; collaboration between organizations and healthcare providers; use of improvement methods and (theoretical) models; leadership and learning; measurements, quality registers and follow-up; and involvement and patient safety. Further QI development in Swedish healthcare and welfare points to an increased importance of collaboration between organizations and coproduction with beneficiaries for the healthcare and welfare services.Originality/value: This paper is one of the first to describe and illuminate the QI development in the healthcare and welfare sector in a country. The trajectory also points to a need for coproduction to handle future challenges.
11.	Andersson, Åsa, 1963-, et al. (author) Patient-centered outcomes and outcome measurements for people aged 65 years and older-a scoping review 2024 In: BMC Geriatrics. - : BioMed Central (BMC). - 1471-2318. ; 24:1 Research review (peer-reviewed)abstract INTRODUCTION: The aging population is a challenge for the healthcare system that must identify strategies that meet their needs. Practicing patient-centered care has been shown beneficial for this patient-group. The effect of patient-centered care is called patient-centered outcomes and can be appraised using outcomes measurements.OBJECTIVES: The main aim was to review and map existing knowledge related to patient-centered outcomes and patient-centered outcomes measurements for older people, as well as identify key-concepts and knowledge-gaps. The research questions were: How can patient-centered outcomes for older people be measured, and which patient-centered outcomes matters the most for the older people? STUDY DESIGN: Scoping review.METHODS: Search for relevant publications in electronical databases, grey literature databases and websites from year 2000 to 2021. Two reviewers independently screened titles and abstracts, followed by full text review and extraction of data using a data extraction framework.RESULTS: Eighteen studies were included, of which six with involvement of patients and/or experts in the process on determine the outcomes. Outcomes that matter the most to older people was interpreted as: access to- and experience of care, autonomy and control, cognition, daily living, emotional health, falls, general health, medications, overall survival, pain, participation in decision making, physical function, physical health, place of death, social role function, symptom burden, and time spent in hospital. The most frequently mentioned/used outcomes measurements tools were the Adult Social Care Outcomes Toolkit (ASCOT), EQ-5D, Gait Speed, Katz- ADL index, Patient Health Questionnaire (PHQ9), SF/RAND-36 and 4-Item Screening Zarit Burden Interview.CONCLUSIONS: Few studies have investigated the older people's opinion of what matters the most to them, which forms a knowledge-gap in the field. Future research should focus on providing older people a stronger voice in what they think matters the most to them.
12.	Anell, Anders, et al. (author) Access to automated comparative feedback reports in primary care : a study of intensity of use and relationship with clinical performance among Swedish primary care practices 2024 In: BMC Health Services Research. - : BioMed Central (BMC). - 1472-6963. ; 24:1 Journal article (peer-reviewed)abstract Background: Digital applications that automatically extract information from electronic medical records and provide comparative visualizations of the data in the form of quality indicators to primary care practices may facilitate local quality improvement (QI). A necessary condition for such QI to work is that practices actively access the data. The purpose of this study was to explore the use of an application that visualizes quality indicators in Swedish primary care, developed by a profession-led QI initiative (“Primärvårdskvalitet”). We also describe the characteristics of practices that used the application more or less extensively, and the relationships between the intensity of use and changes in selected performance indicators. Methods: We studied longitudinal data on 122 primary care practices’ visits to pages (page views) in the application over a period up to 5 years. We compared high and low users, classified by the average number of monthly page views, with respect to practice and patient characteristics as well as baseline measurements of a subset of the performance indicators. We estimated linear associations between visits to pages with diabetes-related indicators and the change in measurements of selected diabetes indicators over 1.5 years. Results: Less than half of all practices accessed the data in a given month, although most practices accessed the data during at least one third of the observed months. High and low users were similar in terms of most studied characteristics. We found statistically significant positive associations between use of the diabetes indicators and changes in measurements of three diabetes indicators. Conclusions: Although most practices in this study indicated an interest in the automated feedback reports, the intensity of use can be described as varying and on average limited. The positive associations between the use and changes in performance suggest that policymakers should increase their support of practices’ QI efforts. Such support may include providing a formalized structure for peer group discussions of data, facilitating both understanding of the data and possible action points to improve performance, while maintaining a profession-led use of applications.
13.	Anell, Anders (author) Reconsidering performance management to support innovative changes in health care services 2024 In: Journal of Health Organization and Management. - 1477-7266. ; 38:9, s. 125-142 Journal article (peer-reviewed)abstract PurposeA large number of studies indicate that coercive forms of organizational control and performance management in health care services often backfire and initiate dysfunctional consequences. The purpose of this article is to discuss new approaches to performance management in health care services when the purpose is to support innovative changes in the delivery of services.Design/methodology/approachThe article represents cross-boundary work as the theoretical and empirical material used to discuss and reconsider performance management comes from several relevant research disciplines, including systematic reviews of audit and feedback interventions in health care and extant theories of human motivation and organizational control.FindingsAn enabling approach to performance management in health care services can potentially contribute to innovative changes. Key design elements to operationalize such an approach are a formative and learning-oriented use of performance measures, an appeal to self- and social-approval mechanisms when providing feedback and support for local goals and action plans that fit specific conditions and challenges.Originality/valueThe article suggests how to operationalize an enabling approach to performance management in health care services. The framework is consistent with new governance and managerial approaches emerging in public sector organizations more generally, supporting a higher degree of professional autonomy and the use of nonfinancial incentives.
14.	Angelini, Eva, 1964, et al. (author) Evaluating a targeted person-centred pain management intervention programme in lumbar spine surgery - a controlled segment-specific before-and-after interventional design 2024 In: BMC Health Services Research. - 1472-6963. ; 24:1 Journal article (peer-reviewed)abstract Background: Postoperative pain management in lumbar spine surgery care remains a challenge. The aim of this study was to evaluate the impact of a person-centred postoperative pain management intervention programme on lumbar spine surgery patients on postoperative pain, shared decision-making, and satisfaction with postoperative pain management. Methods: The study was performed with a controlled before-and-after interventional design in an orthopaedic unit at a university hospital. Person-centred pain management for patients undergoing spine surgery was developed in co-creation by a multi-professional team and implemented throughout the care pathway. The usual care group (pre-intervention) served as a comparison to the intervention group. Pain intensity, shared decision-making in pain management, and patient satisfaction with results of pain management, served as patient-reported measures, collected using the International Pain Outcomes questionnaire and analysed using descriptive statistics. Results: The intervention showed no benefit for patients’ pain and satisfaction, while shared decision-making in pain management was significant lower in the intervention group than in the conventional group. The per-protocol analysis showed no significant differences between groups. Conclusion: The initial assumption of the study, that the implementation of a co-created structured person-centred care pathway would improve patient-reported outcomes, was not confirmed. The periodically low fidelity to the intervention due to organizational constraints (due to sub-optimal organizational conditions and managerial support) may have affected the results.
15.	Ares-Blanco, S., et al. (author) Exploring the accessibility of primary health care data in Europe's COVID-19 response: developing key indicators for managing future pandemics (Eurodata study) 2024 In: BMC Primary Care. - 2731-4553. ; 25:1 Journal article (peer-reviewed)abstract Background: Primary Health Care (PHC) plays a crucial role in managing the COVID-19 pandemic, with only 8% of cases requiring hospitalization. However, PHC COVID-19 data often goes unnoticed on European government dashboards and in media discussions. This project aims to examine official information on PHC patient care during the COVID-19 pandemic in Europe, with specific objectives: (1) Describe PHC’s clinical pathways for acute COVID-19 cases, including long-term care facilities, (2) Describe PHC COVID-19 pandemic indicators, (3) Develop COVID-19 PHC activity indicators, (4) Explain PHC’s role in vaccination strategies, and (5) Create a PHC contingency plan for future pandemics. Methods: A mixed-method study will employ two online questionnaires to gather retrospective PHC data on COVID-19 management and PHC involvement in vaccination strategies. Validation will occur through focus group discussions with medical and public health (PH) experts. A two-wave Delphi survey will establish a European PHC indicators dashboard for future pandemics. Additionally, a coordinated health system action plan involving PHC, secondary care, and PH will be devised to address future pandemic scenarios. Analysis: Quantitative data will be analysed using STATA v16.0 for descriptive and multivariate analyses. Qualitative data will be collected through peer-reviewed questionnaires and content analysis of focus group discussions. A Delphi survey and multiple focus groups will be employed to achieve consensus on PHC indicators and a common European health system response plan for future pandemics. The Eurodata research group involving researchers from 28 European countries support the development. Discussion: While PHC manages most COVID-19 acute cases, data remains limited in many European countries. This study collects data from numerous countries, offering a comprehensive perspective on PHC’s role during the pandemic in Europe. It pioneers the development of a PHC dashboard and health system plan for pandemics in Europe. These results may prove invaluable in future pandemics. However, data may have biases due to key informants’ involvement and may not fully represent all European GP practices. PHC has a significant role in the management of the COVID-19 pandemic, as most of the cases are mild or moderate and only 8% needed hospitalization. However, PHC COVID-19 activity data is invisible on governments’ daily dashboards in Europe, often overlooked in media and public debates. © The Author(s) 2024.
16.	Asuman, Derek, et al. (author) Labour market consequences of an early-onset disability : the case of cerebral palsy 2024 In: Applied Economics. - : Informa UK Limited. - 0003-6846 .- 1466-4283. ; 56:11, s. 1309-1326 Journal article (peer-reviewed)abstract The labour market consequences of early-onset or congenital disabilities have received little attention in the literature. In this paper, we study the consequences of cerebral palsy (CP), a lifelong early onset disability, and pathways through which it affects labour outcomes. We use data from multiple linked Swedish National Population Registers between 1990 and 2015 and apply both regression and mediation analysis. Our results show, as expected, strong negative consequences of CP on labour outcomes, and that the consequences have increased over time. The social insurance system, we find, compensates for some of the losses through non-work-related benefits. The results also suggest that the direct effects of CP per se have prominent impact on labour market outcomes. Thus, given the same level of mediators, persons with CP will have lower labour outcomes compared to persons without CP. Our results draw attention to the widening labour market consequences of CP in Sweden.
17.	Augustyńska, J, et al. (author) Automated Peritoneal Dialysis With Remote Patient Monitoring: Clinical Effects and Economic Consequences for Poland 2024 In: Value in health regional issues. - 2212-1102. ; 40, s. 53-62 Journal article (peer-reviewed)
18.	Aweesha, Huzeifa, 1980-, et al. (author) Sudan's health sector partnership : from confined progression to openness and hope to uncertain demise 2024 In: Development Policy Review. - : John Wiley & Sons. - 0950-6764 .- 1467-7679. ; 42:2 Journal article (peer-reviewed)abstract Motivation: Despite signature of the 2005 Paris Declaration on Aid Effectiveness and subsequent adoption of the effective development cooperation (EDC) principles for better health cooperation, there is a gap in documenting the challenges to implement these commitments at country level. Sudan represents an interesting case study: the country adopted a local health compact in 2014, but for much of the time since the regime was under sanction. Sudan witnessed a revolution in 2018, followed by a counter-coup in 2021.Purpose: We aim to explore the evolution of Sudan health sector partners’ relationships, perspectives, and adherence to EDC principles of ownership, alignment, and harmonization, while accounting for underlying processes and context changes between 2015 and 2022.Methods and approach: We collected data through two rounds of interviews, in 2015 (16) and 2022 (8), with stakeholders within the Sudan Health Sector Partnership. We used the framework method for data analysis where responses are coded then sorted into themes.Findings: Prior to the 2019 revolution cooperation was progressive but restricted, with civil society marginalized and a dominating government. The principles, especially ownership, were misused and misaligned with national priorities driven by donors’ interests and conditions.The transitional (post-revolution) period witnessed partners’ openness and influx, but unstable leadership and subsequent changes in priorities led to wasted opportunities.Following the coup, donors adopted a no-contact policy towards the de facto government. Instead, the expectation was that civil society organizations would replace the government as the main implementers. Overall, limited coordination capacity and no sustainability measures were present throughout.Policy implications: Much of what was observed was down to the often complicated and difficult context of the governance of Sudan. That said, general issues arose including the government's ability to coordinate policy and implementation; the need for stable, legitimate arrangements; and the need to define the role of civil society and to empower civil society organizations. Within a complex and volatile context, revisiting partners’ commitments through joint compact reviews and transparent EDC progress monitoring is crucial.
19.	Baker, T, et al. (author) Strategies for Oxygen Ecosystems in Middle-Income Countries: A Review and Case Study from Lebanon 2024 In: Emergency medicine international. - 2090-2840. ; 2024, s. 9964636- Journal article (peer-reviewed)
20.	Barjesteh van Waalwijk van Doorn-Khosrovani, Sahar, et al. (author) PCM4EU and PRIME-ROSE : Collaboration for implementation of precision cancer medicine in Europe 2024 In: Acta Oncologica. - 1651-226X .- 1651-226X. ; 63, s. 385-391 Journal article (peer-reviewed)abstract BACKGROUND: In the two European Union (EU)-funded projects, PCM4EU (Personalized Cancer Medicine for all EU citizens) and PRIME-ROSE (Precision Cancer Medicine Repurposing System Using Pragmatic Clinical Trials), we aim to facilitate implementation of precision cancer medicine (PCM) in Europe by leveraging the experience from ongoing national initiatives that have already been particularly successful. PATIENTS AND METHODS: PCM4EU and PRIME-ROSE gather 17 and 24 partners, respectively, from 19 European countries. The projects are based on a network of Drug Rediscovery Protocol (DRUP)-like clinical trials that are currently ongoing or soon to start in 11 different countries, and with more trials expected to be established soon. The main aims of both the projects are to improve implementation pathways from molecular diagnostics to treatment, and reimbursement of diagnostics and tumour-tailored therapies to provide examples of best practices for PCM in Europe. RESULTS: PCM4EU and PRIME-ROSE were launched in January and July 2023, respectively. Educational materials, including a podcast series, are already available from the PCM4EU website (http://www.pcm4eu.eu). The first reports, including an overview of requirements for the reimbursement systems in participating countries and a guide on patient involvement, are expected to be published in 2024. CONCLUSION: European collaboration can facilitate the implementation of PCM and thereby provide affordable and equitable access to precision diagnostics and matched therapies for more patients. ble from the PCM4EU website (http://www.pcm4eu.eu). The first reports, including an overview of requirements for the reimbursement systems in participating countries and a guide on patient involvement, are expected to be published in 2024. CONCLUSION: European collaboration can facilitate the implementation of PCM and thereby provide affordable and equitable access to precision diagnostics and matched therapies for more patients.
21.	Barten, Dennis G., et al. (author) Hospital vulnerabilities to a changing climate: Extreme heat, droughts, and wildfires 2024 In: European Journal of Emergency Medicine. - 0969-9546 .- 1473-5695. Journal article (other academic/artistic)
22.	Bastos Gonçalves, Frederico, et al. (author) The one size fits all EVAR follow up has proven unsuccessful and is a thing of the past 2024 In: European Journal of Vascular and Endovascular Surgery. - : Elsevier. - 1078-5884 .- 1532-2165. ; 67:5, s. 703-704 Journal article (other academic/artistic)
23.	Beeckman, Dimitri, Professor, 1982-, et al. (author) The role community-based healthcare providers play in managing hard-to-heal wounds 2024 In: International Wound Journal. - : Wiley-Blackwell Publishing Inc.. - 1742-4801 .- 1742-481X. ; 21:1 Journal article (peer-reviewed)abstract It is common for community-based healthcare providers (CHPs)-many of whom have not received specialised training in wound care-to deliver initial and ongoing management for various wound types and diverse populations. Wounds in any setting can rapidly transition to a stalled, hard-to-heal wound (HTHW) that is not following a normal healing trajectory. Failure to recognise or address issues that cause delayed healing can lead to increased costs, healthcare utilisation and suffering. To encourage early intervention by CHPs, a panel of wound care experts developed actionable evidence-based recommendations for CHPs delineating characteristics and appropriate care in identifying and treating HTHWs. A HTHW is a wound that fails to progress towards healing with standard therapy in an orderly and timely manner and should be referred to a qualified wound care provider (QWCP) for advanced assessment and diagnosis if not healed or reduced in size by 40%-50% within 4 weeks. HTHWs occur in patients with multiple comorbidities, and display increases in exudate, infection, devitalised tissue, maceration or pain, or no change in wound size. CHPs can play an important initial role by seeing the individual's HTHW risk, addressing local infection and providing an optimal wound environment. An easy-to-follow one-page table was developed for the CHP to systematically identify, evaluate and treat HTHWs, incorporating a basic toolkit with items easily obtainable in common office/clinic practice settings. A flow chart using visual HTHW clinical cues is also presented to address CHPs with different learning styles. These tools encourage delivery of appropriate early interventions that can improve overall healthcare efficiency and cost.
24.	Bejerholm, Ulrika, et al. (author) Individual Placement and Support for persons with alcohol and drug addiction in a Swedish context (IPS-ADAS) : study protocol for a randomised controlled trial 2024 In: Trials. - : Springer Nature. - 1745-6215. ; 25:1 Journal article (peer-reviewed)abstract Background: Employment is a vital source for experiencing well-being and lowering the risk of long-term social marginalisation and poverty. For persons with alcohol and drug addiction, it may also improve sobriety. However, the unemployment situation for this group reflects the knowledge gap in effective interventions to support employment. While Individual Placement and Support (IPS) is recognised as evidence-based supported employment for those with serious mental health problems, no scientific evidence for the target group of addiction exists to date. The aim of the present IPS for Alcohol and Drug Addiction in Sweden (IPS-ADAS) trial is to study whether IPS has an effect on gaining employment for this group. Methods: The IPS-ADAS trial is a multisite, pragmatic, parallel, and single-blinded, superiority randomised controlled trial (RCT). Participants (N = 330) will be randomly assigned (1:1) and participate in IPS plus treatment as usual within Addiction Services (IPS + TAU) or Traditional Vocational Rehabilitation (TVR) available plus TAU (TVR + TAU) for 12 months. The principle of intention-to-treat (ITT) will be applied. The hypothesis is that a significantly larger proportion of IPS + TAU participants will be employed for > 1 day (primary outcome), reach employment sooner, work more hours and longer periods of time, and have a higher income as compared to TVR + TAU participants at 18-month follow-up. We further anticipate that those who benefit from IPS + TAU will use less alcohol and drugs, experience better health, and use less care and support, including support from the justice system, in comparison to TVR + TAU participants, at 6, 12, and 18 months. A supplementary process evaluation, using the IPS Fidelity Scale (25 items) and adhered interviews will address delivery and receipt of the IPS as well as contextual hinders and barriers for coproduction and implementation. Working age (18–65), willingness to work, unemployment, participation in an information meeting about the RCT, treatment for addiction diagnosis, and being financially supported by welfare, constitute eligible criteria. Discussion: A primary study on the effectiveness of IPS on employment for the new target group of addictions will add to the international IPS knowledge base and inform national policy to include the underrepresented group in working life. Trial registration: WHO International Clinical Trials Registry Platform ISRCTN10492363. Registered on 14 August 2023.
25.	Bellafronte, Natália Tomborelli, et al. (author) A survey of preoperative surgical nutrition practices, opinions, and barriers across Canada 2024 In: Applied Physiology, Nutrition and Metabolism. - : National Research Council Canada. - 1715-5312 .- 1715-5320. ; 49:5, s. 687-699 Journal article (peer-reviewed)abstract Malnutrition is prevalent among surgical candidates and associated with adverse outcomes. Despite being potentially modifiable, malnutrition risk screening is not a standard preoperative practice. We conducted a cross-sectional survey to understand healthcare professionals' (HCP) opinions and barriers regarding screening and treatment of malnutrition. HCPs working with adult surgical patients in Canada were invited to complete an online survey. Barriers to preoperative malnutrition screening were assessed using the Capability Opportunity Motivation-Behaviour model. Quantitative data were analyzed using descriptive statistics and qualitative data were analyzed using summative content analysis. Of the 225 HCPs surveyed (n=111 dietitians, n=72 physicians, n=42 allied healthcare professionals), 96%-100% agreed that preoperative malnutrition is a modifiable risk factor associated with worse surgical outcomes and is a treatment priority. Yet, 65% (n=142/220; dietitians: 88% vs. physicians: 40%) reported screening for malnutrition, mostly in the postoperative period (n=117) by dietitians (n=94), and just 42% (48/113) of non-dietitian respondents referred positively screened patients to a dietitian for further assessment and treatment. The most prevalent barriers for malnutrition screening were related to opportunity, including availability of resources (57%, n=121/212), time (40%, n=84/212) and support from others (38%, n=80/212). In conclusion, there is a gap between opinion and practice among surgical HCPs pertaining to malnutrition. Although HCPs agreed malnutrition is a surgical priority, the opportunity to screen for nutrition risk was a great barrier.
26.	Bergquist, Magnus, 1960-, et al. (author) Trust and stakeholder perspectives on the implementation of AI tools in clinical radiology 2024 In: European Radiology. - Heidelberg : Springer. - 0938-7994 .- 1432-1084. ; 34:1, s. 338-347 Journal article (peer-reviewed)abstract Objectives: To define requirements that condition trust in artificial intelligence (AI) as clinical decision support in radiology from the perspective of various stakeholders and to explore ways to fulfil these requirements.Methods: Semi-structured interviews were conducted with twenty-five respondents—nineteen directly involved in the development, implementation, or use of AI applications in radiology and six working with AI in other areas of healthcare. We designed the questions to explore three themes: development and use of AI, professional decision-making, and management and organizational procedures connected to AI. The transcribed interviews were analysed in an iterative coding process from open coding to theoretically informed thematic coding.Results: We identified four aspects of trust that relate to reliability, transparency, quality verification, and inter-organizational compatibility. These aspects fall under the categories of substantial and procedural requirements.Conclusions: Development of appropriate levels of trust in AI in healthcare is complex and encompasses multiple dimensions of requirements. Various stakeholders will have to be involved in developing AI solutions for healthcare and radiology to fulfil these requirements. Clinical relevance statement: For AI to achieve advances in radiology, it must be given the opportunity to support, rather than replace, human expertise. Support requires trust. Identification of aspects and conditions for trust allows developing AI implementation strategies that facilitate advancing the field.Key Points:• Dimensions of procedural and substantial demands that need to be fulfilled to foster appropriate levels of trust in AI in healthcare are conditioned on aspects related to reliability, transparency, quality verification, and inter-organizational compatibility. • Creating the conditions for trust to emerge requires the involvement of various stakeholders, who will have to compensate the problem’s inherent complexity by finding and promoting well-defined solutions. © 2023, The Author(s).
27.	Bergström, Cecilia, et al. (author) The chiropractors' dilemma in caring for older patients with musculoskeletal complaints: Collaborate, integrate, coexist, or separate? 2024 In: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 19:5 Journal article (peer-reviewed)abstract The world’s elderly population is growing at a rapid pace. This has led to an increase in demand on the health and welfare systems due to age-related disorders, with musculoskeletal complaints driving the need for rehabilitation services. However, there are concerns about health services’ ability to meet this demand. While chiropractic care is gaining recognition for its benefits in treating older adults with musculoskeletal disorders, there is limited scientific literature on chiropractors’ role and experiences in this area. To bridge this gap, we interviewed 21 chiropractors in Great Britain, the Netherlands, Norway, and Sweden. Inductive qualitative content analysis was used to analyse the interviews, and despite differences in integration and regulation between the countries, several common facilitators and barriers in caring for and managing older patients with musculoskeletal complaints emerged. While participants expressed optimism about future collaborations with other healthcare professionals and the integration of chiropractic into national healthcare systems, they also highlighted significant concerns regarding the existing healthcare infrastructure. The participants also felt that chiropractors, with their non-surgical and holistic approach, were well-positioned to be the primary point of contact for older patients. However, there were some common barriers, such as the affordability of care, limited integration of chiropractic, and the need to prioritise musculoskeletal complaints within public healthcare. Our findings suggest that chiropractors experience their clinical competencies as an underutilised resource in the available healthcare systems and that they could contribute to and potentially reduce the escalating burden of musculoskeletal complaints and associated costs among older patients. Additionally, our findings highlight the desire among the participants to foster collaboration among healthcare professionals and integrate chiropractic into the national public healthcare system. Integrating chiropractors as allied health professionals was also perceived to improve coordinated, patient-centred healthcare for older adults.
28.	Björne, Petra, et al. (author) Healthcare provision for Swedish persons with intellectual and developmental disabilities 2024 In: Journal of Policy and Practice in Intellectual Disabilities. - 1741-1122. Journal article (peer-reviewed)abstract This paper aims to give a short description of Swedish healthcare provision for persons with intellectual and developmental disabilities (IDD). Swedish persons with IDD should have access to the general healthcare system on the same terms as the general population, and thereby enjoy equal opportunities for healthcare of good quality. Reports from government agencies and interest groups, however, describe a decentralised and fragmented healthcare system that requires significant coordination; a lack of adjustments; a lack of specialised healthcare professionals; and gaps in healthcare provision. Research in recent years has reported unequal access to planned healthcare; excess mortality and premature deaths; and insufficient or inadequate support in end-of-life care. We conclude that health inequalities and healthcare challenges faced by Swedish persons with IDD might be caused by obstacles at several structural levels. Allowing persons with IDD to access timely and adequate healthcare requires the development of better opportunities for coordination of healthcare and social services, as well as training for healthcare professionals and direct support staff.
29.	Black, Nicole, et al. (author) Children's time allocation and the socioeconomic gap in human capital 2024 In: European Economic Review. - 0014-2921. ; 168 Journal article (peer-reviewed)abstract Children's time investments in various activities may be important for reducing socioeconomic status (SES) gaps in educational and mental health outcomes. Using detailed time use diaries of Australian children aged 4–14, we observe that children from low SES backgrounds spend more time on digital media and less time on out-of-school enrichment activities, organised or for leisure. We explain the SES gap by employing a human capital development panel model and find that this difference contributes about 3% to the observed SES gap in numeracy skills. The results are supported by exogeneity tests and numerous robustness checks. The contribution is larger for males, older age groups, and if the cumulative effect on learning is considered. No clear results are found for literacy skills and mental health outcomes. The findings imply that interventions promoting a shift away from digital media towards out-of-school enrichment activities could help reduce the SES gap in human capital.
30.	Blease, Charlotte, et al. (author) Experiences and opinions of general practitioners with patient online record access : an online survey in England 2024 In: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 14:1 Journal article (peer-reviewed)abstract OBJECTIVE: To describe the experiences and opinions of general practitioners (GPs) in England regarding patients having access to their full online GP health records.DESIGN: Convenience sample, online survey.PARTICIPANTS: 400 registered GPs in England.MAIN OUTCOME MEASURES: Investigators measured GPs' experiences and opinions about online record access (ORA), including patient care and their practice.RESULTS: A total of 400 GPs from all regions of England responded. A minority (130, 33%) believed ORA was a good idea. Most GPs believed a majority of patients would worry more (364, 91%) or find their GP records more confusing than helpful (338, 85%). Most GPs believed a majority of patients would find significant errors in their records (240, 60%), would better remember their care plan (280, 70%) and feel more in control of their care (243, 60%). The majority believed they will/already spend more time addressing patients' questions outside of consultations (357, 89%), that consultations will/already take significantly longer (322, 81%) and that they will be/already are less candid in their documentation (289, 72%) after ORA. Nearly two-thirds of GPs believed ORA would increase their litigation (246, 62%).CONCLUSIONS: Similar to clinicians in other countries, GPs in our sample were sceptical of ORA, believing patients would worry more and find their records more confusing than helpful. Most GPs also believed the practice would exacerbate work burdens. However, the majority of GPs in this survey also agreed there were multiple benefits to patients having online access to their primary care health records. The findings of this survey also contribute to a growing body of contrastive research from countries where ORA is advanced, demonstrating clinicians are sceptical while studies indicate patients appear to derive multiple benefits.
31.	Blease, Charlotte (author) Open AI meets open notes : surveillance capitalism, patient privacy and online record access 2024 In: Journal of Medical Ethics. - : BMJ Publishing Group Ltd. - 0306-6800 .- 1473-4257. ; 50:2, s. 84-89 Journal article (peer-reviewed)abstract Patient online record access (ORA) is spreading worldwide, and in some countries, including Sweden, and the USA, access is advanced with patients obtaining rapid access to their full records. In the UK context, from 31 October 2023 as part of the new NHS England general practitioner (GP) contract it will be mandatory for GPs to offer ORA to patients aged 16 and older. Patients report many benefits from reading their clinical records including feeling more empowered, better understanding and remembering their treatment plan, and greater awareness about medications including possible adverse effects. However, a variety of indirect evidence suggests these benefits are unlikely to accrue without supplementation from internet-based resources. Using such routes to augment interpretation of the data and notes housed in electronic health records, however, comes with trade-offs in terms of exposing sensitive patient information to internet corporations. Furthermore, increased work burdens on clinicians, including the unique demands of ORA, combined with the easy availability and capability of a new generation of large language model (LLM)-powered chatbots, create a perfect collision course for exposing sensitive patient information to private tech companies. This paper surveys how ORA intersects with internet associated privacy risks and offers a variety of multilevel suggestions for how these risks might be better mitigated.
32.	Bognar, Greg, 1975- (author) A theory of triage 2024 In: Bioethics. - 0269-9702 .- 1467-8519. ; 38:2, s. 95-106 Journal article (peer-reviewed)abstract This paper provides a general framework for conceptualizing triage for intensive care unit admissions in public health emergencies such as the COVID-19 pandemic. It applies this framework to some of the guidelines issued during the pandemic and addresses some controversial issues, including the role of age, the use of lives or life years, and the relevance of quality of life considerations. The paper defends a view on which triage protocols for public health emergencies should aim to maximize the number of life years saved, may take into account age as a proxy, and should ignore quality of life considerations.
33.	Bolte, S, et al. (author) Assessment of functioning in ADHD according to World Health Organization standards: First revision of the International Classification of Functioning, Disability and Health Core Sets 2024 In: Developmental medicine and child neurology. - 1469-8749. ; 66:9, s. 1201-1214 Journal article (peer-reviewed)
34.	Borgstrom, Anton Modee, et al. (author) Swedish consensus regarding difficult pre-hospital airway management: a Delphi study 2024 In: BMC Emergency Medicine. - : BMC. - 1471-227X. ; 24:1 Journal article (peer-reviewed)abstract Background The aim of this study was to establish a consensus among experts in prehospital work regarding the management of difficult airways in prehospital care in Sweden. The results were subsequently used to develop an algorithm for handling difficult airway in prehospital care, as there was none available in Sweden prior to this study.Methods This two-round Delphi study was conducted by forming an expert panel comprising anesthesiologists and anesthesia nurses working in prehospital setting in Sweden. The expert panel responded digital forms with questions and statements related to airway management. The study continued until consensus was reached, defined as more than 70% agreement. The study took place from December 4, 2021, to May 15, 2022.Results In the first round, 74 participants took part, while the second round involved 37 participants. Consensus was reached in 16 out of 17 statements. 92% of the participants agreed that an airway algorithm adapted for prehospital use is necessary.Conclusions The capacity to adapt the approach to airway management based on specific pre-hospital circumstances is crucial. It holds significance to establish a uniform framework that is applicable across various airway management scenarios. Consequently, the airway management algorithm that has been devised should be regarded as a recommendation, allowing for flexibility rather than being interpreted as a rigid course of action. This represents the inaugural nationwide algorithm for airway management designed exclusively for pre-hospital operations in Sweden. The algorithm is the result of a consensus reached by experts in pre-hospital care.Conclusions The capacity to adapt the approach to airway management based on specific pre-hospital circumstances is crucial. It holds significance to establish a uniform framework that is applicable across various airway management scenarios. Consequently, the airway management algorithm that has been devised should be regarded as a recommendation, allowing for flexibility rather than being interpreted as a rigid course of action. This represents the inaugural nationwide algorithm for airway management designed exclusively for pre-hospital operations in Sweden. The algorithm is the result of a consensus reached by experts in pre-hospital care.
35.	Brodeur, Magaly, et al. (author) Cannabis use, mental health, and problematic Internet use in Quebec : A study protocol 2024 In: PLoS ONE. - 1932-6203. ; 19:6 June Journal article (peer-reviewed)abstract Background Problematic Internet use is characterized by excessive use of online platforms that can result in social isolation, family problems, psychological distress, and even suicide. Problematic Internet use has been associated with cannabis use disorder, however knowledge on the adult population remains limited. In Quebec, cannabis use has significatively increased since 2018, and it is associated with various risks in public safety, public health, and mental health. This study aims to identify factors associated with problematic Internet use among adult cannabis users and to better understand their experiences. Method This project is a mixed explanatory sequential study consisting of two phases. Phase 1 (n = 1500) will be a cross-sectional correlational study using probability sampling to examine variables that predispose individuals to problematic Internet use, characteristics associated with cannabis use, Internet use, and the mental health profile of adult cannabis users in Quebec. Descriptive analyses and regression models will be used to determine the relationship between cannabis use and Internet use. Phase 2 (n = 45) will be a descriptive qualitative study in the form of semi-structured interviews aimed at better understanding the experience and background of cannabis users with probable problematic Internet use. Discussion The results of this study will support the development of public policies and interventions for the targeted population, by formulating courses of action that contribute to the prevention and reduction of harms associated with cannabis use and problematic Internet use. Furthermore, an integrated knowledge mobilization plan will aid in the large-scale dissemination of information that can result useful to decision-makers, practitioners, members of the scientific community, and the general population regarding the use of cannabis and the Internet.
36.	Brycke, Sara, et al. (author) Implementation of evidence-based interventions according to the Swedish national guidelines for strokecare : a nationwide survey among physiotherapists 2024 In: Journal of Rehabilitation Medicine. - : Medical Journals Sweden. - 1650-1977 .- 1651-2081. ; 56 Journal article (peer-reviewed)abstract Objective: To investigate (i) to what extent physiotherapists (PTs) working in stroke rehabilitation in various parts of the stroke care chain have implemented interventions according to the national guidelines for stroke (NGS), (ii) facilita-ting and hindering factors for the implementation, and (iii) differences between various care settings.Design: A cross-sectional study.Subjects: 148 PTs working in stroke rehabilitation in various parts of the care chain in Sweden.Methods: Data were collected by a web-based survey.Results: Task-specific training for walking (80–98%), impaired motor function (64–100%) and fall prevention (73–92%) were most implemented. Factors that facilitated implementation were: important to comply with the NGS, that PTs had confidence to per-form the interventions, and that interventions were clearly described. Limited time, lack of resources, no clear goals or routines at the workplace hindered the implementation. Significant differences (p < 0.05) between the settings existed. Municipal and primary care reported most challenges in implementing the NGS and providing evidence-based interventions.Conclusion: Most interventions, with high priority according to NGS, are provided by PTs working in stroke rehabilitation, although differences in various parts of the care chain exist. Knowledge, time, education and supportive management are important factors when implementing evidence-based interventions.
37.	Bäckström, Josefin, Med dr, 1977-, et al. (author) I Was Merely a Brick in the Game : A Qualitative Study on Registered Nurses' Reasons for Quitting Their Jobs in Hospitals 2024 In: Journal of Nursing Management. - : Hindawi Publishing Corporation. - 0966-0429 .- 1365-2834. ; 2024 Journal article (peer-reviewed)abstract The aim was to explore why registered nurses (RNs) in Sweden choose to quit their jobs in hospitals, also in relation to experienced patient safety. Previous research has shown that nurse turnover, especially in hospital settings, is a serious challenge for society and health care globally. Insufficient staffing of RNs is linked to poorer patient outcomes and a general patient safety at risk. It is, therefore, important to continually explore how nurses describe their reasons for quitting their jobs. The study was conducted using a qualitative descriptive design, based on 11 semistructured interviews with RNs. The analysis generated four categories describing the results: Feeling that the profession is not valued; Psychological and physical symptoms related to work; An insufficient and unsupportive organization; and Unsatisfying leadership and teamwork. Specifically, the RNs participating in this study described a range of reasons for quitting, where the feeling of not being valued and treated as a respected and autonomous profession was a common thread throughout the results. RNs experienced that, overall, the insufficient work conditions, also resulting in lower patient safety, ultimately led to their decision to quit. The findings highlight the crucial need for employers to develop working conditions for RNs, to make sure that the profession is valued according to professional standards and provide the potential for autonomous nursing practice. To reduce nurse turnover, and instead attract and retain nurses, leadership and management in nursing need to be adjusted to meet the demands of a modern academic profession.
38.	Bärkås, Annika, et al. (author) Patients' Experiences of Demanded Access to Online Health Records 2024 In: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 310, s. 1424-1425 Journal article (peer-reviewed)abstract Patient-Accessible Electronic Health Records (PAEHR) is particularly controversial in mental healthcare. We aim to explore if there is any association between patients with mental health conditions and the experience of someone demanding access to their PAEHR. A chi-square test showed a significant association between group belonging and experiences of someone demanding access to the PAEHR.
39.	Cam, Henrik, et al. (author) Exploring communication challenges during hospital discharge of older patients: insights from healthcare professionals' perspectives 2024 In: Exploring communication challenges during hospital discharge of older patients: insights from healthcare professionals' perspectives. ; , s. 261- Conference paper (peer-reviewed)abstract Background and objective: Hospital discharge of older patients is a critical and intricate process that poses substantial challenges for patient safety. Effective communication among stakeholders during this process is therefore essential to ensure desirable patient outcomes. This study aimed to explore the communication process and medication information transfer during hospital discharge of older patients, from the perspective of healthcare professionals (HCPs) across different healthcare organisations.Method: A qualitative study using focus groups and semi-structured interviews was conducted with physicians, nurses, and pharmacists, from hospitals, primary healthcare centres, nursing homes, and home healthcare in Sweden. Data collection occurred between September and October 2021. A semi-structured interview guide was used to explore current medication communication practices, potential improvements, and feedback on suggestions for alternative processes. The data were thematically analysed using the systematic text condensation method.Main outcome measures: N/A.Results: Four focus group discussions and three semi-structured interviews were conducted with 23 HCPs. Three themes emerged: (1) Support systems that help and hinder; identifies the use of laws and regulations, nursing homes, and informal caregivers in the discharge process to compensate for the fragmented healthcare organisations and the impact of these structures on HCPs' communication practices; 2) Communication between two separate worlds; describes the challenges in communication experienced by HCPs working in different healthcare organisations and how they manage them; and 3) The large number of medically complex patients; depicts the impact of the highly pressurised healthcare system on HCPs' communication practices during hospital discharge.Conclusion: This study highlights the complex nature of hospital discharge of older patients. Communication at hospital discharge is hindered by the fragmented, highly pressurised healthcare system, posing a risk to patient safety. HCPs face challenges in managing the communication difficulties and, as a consequence, are at risk of moral distress. Therefore, developing and implementing improved communication practices during hospital discharge is crucial for the benefit of both patients and HCPs.
40.	Cardós-Alonso, María Carmen, et al. (author) Use of self-efficacy scale in mass casualty incidents during drill exercises 2024 In: BMC Health Services Research. - : BioMed Central (BMC). - 1472-6963. ; 24:1 Journal article (peer-reviewed)abstract Introduction: Medical First Responders (MFRs) in the emergency department SUMMA 112 are tasked with handling the initial management of Mass Casualty Incidents (MCI) and building response capabilities. Training plays a crucial role in preparing these responders for effective disaster management. Yet, evaluating the impact of such training poses challenges since true competency can only be proven amid a major event. As a substitute gauge for training effectiveness, self-efficacy has been suggested.Objective: The purpose of this study is to employ a pre- and post-test assessment of changes in perceived self-efficacy among MFRs following an intervention focused on the initial management of MCI. It also aimed to evaluate a self-efficacy instrument for its validity and reliability in this type of training.Method: In this study, we used a pretest (time 1 = T1) – post-test (time 2 = T2) design to evaluate how self-efficacy changed after a training intervention with 201 MFRs in initial MCI management. ANOVA within-subjects and between subjects analyses were used. Results: The findings reveal a noteworthy change in self-efficacy before and after training among the 201 participants. This suggests that the training intervention positively affected participants’ perceived capabilities to handle complex situations like MCI.Conclusion: The results allow us to recommend a training program with theory components together with practical workshops and live, large-scale simulation exercises for the training of medical first responders in MCI, as it significantly increases their perception of the level of self-efficacy for developing competencies associated with disaster response.
41.	Carson, Dean B., 1970-, et al. (author) Addressing the workforce crisis in (rural) social care : a scoping review 2024 In: International Journal of Health Planning and Management. - : John Wiley & Sons. - 0749-6753 .- 1099-1751. ; 39:3, s. 806-823 Research review (peer-reviewed)abstract Background: This scoping review identifies strategies potentially addressing the ‘workforce crisis’ in rural social care. The increasing global demand for social care has been coupled with widely recognised challenges in recruiting and retaining sufficient staff to provide this care. While the social care workforce crisis is a global phenomenon, it is particularly acute in rural areas.Methods: The review identified 75 papers which (i) had been published since 2017, (ii) were peer reviewed, (iii) concerned social care, (iv) were relevant to rural settings, (v) referenced workforce shortages, and (vi) made recommendations for ways to address those shortages. Thematic synthesis was used to derive three analytical themes with a combined 17 sub-themes applying to recommended strategies and evidence supporting those strategies.Results: The most common strategies for addressing social care workforce shortages were to improve recruitment and retention (‘recruit and retain’) processes without materially changing the workforce composition or service models. Further strategies involved ‘revitalising’ the social care workforce through redeploying existing staff or identifying new sources of labour. A small number of strategies involved ‘re-thinking’ social care service models more fundamentally. Very few papers specifically considered how these strategies might apply to rural contexts, and evidence for the effectiveness of strategies was sparse.Conclusion: The review identifies a significant gap in the literature in relation to workforce innovation and placed-based studies in rural social care systems. It is unlikely that the social care workforce crisis can be addressed through continuing attempts to recruit and retain workers within existing service models.
42.	Carson, Dean Bradley, 1970-, et al. (author) Creating 'good' hospital to home transfers in the rural north of Sweden : informal workarounds and opportunities for improvement 2024 In: Home Health Care Services Quarterly. - : Routledge. - 0162-1424 .- 1545-0856. ; 43:1, s. 18-38 Journal article (peer-reviewed)abstract Hospital to home transfers for older people require effective communication, coordination and collaboration across multiple service settings. Rural Nursing Theory and the Beyond Periphery model explain why this is particularly difficult in rural areas, but there are few examples of how rural services respond. This paper presents a case study of the district of Tärnaby in the inland north of Sweden. Data are drawn from interviews with health and care staff in Tärnaby, observations, and experiences of the researchers. Data were analyzed thematically, with four main themes emerging–role clarity, communication, geography, and understanding of the rural context. Responses to challenges included increasing opportunities for communication between service providers and improving documentation. The paper concludes that informal "workarounds" run the risk of further disconnecting rural service settings from "the city". Rather, the aim needs to be to improve contextual understanding through formally incorporating "the rural" in service design.
43.	Champendal, M., et al. (author) A scoping review of person-centred care strategies used in diagnostic Nuclear Medicine 2024 In: Radiography. - : Elsevier. - 1078-8174 .- 1532-2831. ; 30:2, s. 448-456 Research review (peer-reviewed)abstract IntroductionPerson-centred care (PCC) emphasises the need for the health care professional to prioritise individual patient needs, thereby fostering a collaborative and emphatic environment that empowers patients to actively participate in their own care. This article will explore the purpose of PCC in Nuclear Medicine (NM), while discussing strategies that may be used to implement PCC during diagnostic NM examinations performed on adult patients.MethodsThe scoping review was conducted in accordance with the Joanna Briggs Institute methodology. The search was performed on PubMed, Embase and Cinhal in June 2023 and included studies in English, Spanish, Portuguese and Italian. The research equation combined keywords and Medical Subject Heading terms (MeSH) related to person-centred care (PCC), for all types of nuclear medicine diagnostic examinations performed. Three independent review authors screened all abstracts and titles, and all eligible full-text publications were included in this scoping review.ResultsFifty-three articles, published between 1993 and 2022, met the inclusion criteria for this scoping review. Seven articles were published in 2015 while 56.6 % of all included studies were performed in Europe. Most studies (n = 39/53) focused on the patients only, with the identified patient benefits being: improve patient experience (67.9 %), increase patient comfort (13.2 %), increase patient knowledge (5.7 %), reduction of patient anxiety (9.4 %) and reduction of waiting/scan time (3.8 %).ConclusionThe scoping review identified a lack of research investigating the use of person-centred care strategies in NM. Future research will focus on using an international survey to explore this topic in nuclear medicine departments overseas.Implications for practiceBy applying PCC principles, the NM professional can improve the patient care pathway and increase patient satisfaction, leading to enhanced clinical outcomes.
44.	Chan, Paul Shing-fong, et al. (author) Applying the Consolidated Framework for Implementation Research to investigate factors of implementing alcohol screening and brief intervention among primary care physicians and nurses in Hong Kong, China: an exploratory sequential mixed-method study 2024 In: Implementation Science Communications. - : SPRINGERNATURE. - 2662-2211. ; 5:1 Journal article (peer-reviewed)abstract Background Alcohol screening and brief intervention (SBI) is an evidence-based intervention recommended by the World Health Organization. This study applied the Consolidated Framework for Implementation Research (CFIR) to understand facilitators and barriers of SBI implementation in primary care settings in Hong Kong, China.Methods This was a sequential mixed-method study. In-depth interviews of 21 physicians and 20 nurses working in the primary care settings from the public and private sectors were first conducted to identify CFIR constructs that were relevant to SBI implementation in the Chinese context and potential factors not covered by the CFIR. A questionnaire was then developed based on the qualitative findings to investigate factors associated with SBI implementation among 282 physicians and 295 nurses.Results The in-depth interviews identified 22 CFIR constructs that were facilitators or barriers of SBI implementation in Hong Kong. In addition, the stigmatization of alcohol dependence was a barrier and the belief that it was important for people to control the amount of alcohol intake in any situation was mentioned as a facilitator to implement SBI. In the survey, 22% of the participants implemented SBI in the past year. Factors associated with the SBI implementation echoed most of the qualitative findings. Among physicians and nurses in both sectors, they were more likely to implement SBI when perceiving stronger evidence supporting SBI, better knowledge and self-efficacy to implement SBI, more available resources, and clearer planning for SBI implementation in the clinics but less likely to do so when perceiving SBI implementation to be complicated and of higher cost, and drinking approved by the Chinese culture. Participants were more likely to implement SBI when perceiving SBI fit better with the existing practice and better leadership engagement in the public sector, but not in the private sector. Perceiving a stronger need and greater importance to implement SBI were associated with higher likelihood of SBI implementation among physicians, but not among nurses. Perceiving better organizational culture supporting SBI was positively associated with SBI implementation among nurses, but not among physicians.Conclusions There was a significant gap between SBI evidence and its implementation. Some strategies to improve SBI implementation may be different between physicians and nurses and between those in the public and private sectors. The CFIR is a useful framework for understanding facilitators and barriers of SBI implementation in primary care settings.
45.	Chang, Shao-Hsuan, et al. (author) Cost-effectiveness of early vs delayed use of abemaciclib combination therapy for patients with high-risk hormone receptor-positive/human epidermal growth factor receptor 2-negative early breast cancer. 2024 In: Journal of managed care & specialty pharmacy. - 2376-1032. ; 30:9, s. 942-953 Journal article (peer-reviewed)abstract Abemaciclib was newly approved for hormone receptor-positive (HR+), human epidermal growth factor receptor 2-negative (HER2-) high-risk early breast cancer (EBC). Clinical guidelines recommended abemaciclib as the first-line treatment for HR+/ HER2- EBC (early use) or HR+/ HER2- metastatic breast cancer (MBC) (delayed use).To compare the cost-effectiveness of early vs delayed use of abemaciclib for treatment of HR+/HER2- high-risk EBC. Early use was defined as combined abemaciclib and endocrine therapy as first-line therapy for EBC, followed by treatment with fulvestrant for MBC. Delayed use was defined as endocrine therapy for EBC, followed by combined abemaciclib and fulvestrant therapy for MBC.A 5-state model was developed to estimate lifetime costs, life-years (LYs), and quality-adjusted life-years (QALYs) of hypothetical patients with HR+/ HER2- EBC from a third-party US payer's perspective. Key clinical and safety data were derived from the monarchE and MONARCH 2 clinical trials. Costs, utilities, and disutility values of adverse events were obtained from the literature. We calculated the incremental cost-effectiveness ratio (ICER) of early vs delayed abemaciclib use and compared it with a willingness-to-pay (WTP) threshold of $100,000 per LY or QALY. Deterministic and probabilistic sensitivity analyses (PSAs) were performed to test the robustness of the base-case model.Base-case analysis showed early use yielded 21.08 LYs and 17.93 QALYs for $586,213 and delayed use yielded 11.14 LYs and 9.38 QALYs for $157,576. The ICER of early vs delayed use was $43,136/LY and $50,104/QALY, which was cost-effective at the WTP threshold of $100,000. The PSA result indicated that a 94.6% likelihood of early use (vs delayed use) was cost-effective at the WTP threshold of $100,000 per QALY.This study suggests that giving abemaciclib in the early stage rather than waiting until patients develop metastatic disease (current standard of care in MBC) is a cost-effective strategy.
46.	Clason van de Leur, Jakob, et al. (author) Psychological Treatment of Exhaustion Due to Persistent Non-Traumatic Stress : A Scoping Review 2024 In: International Journal of Behavioral Medicine. - : Springer. - 1070-5503 .- 1532-7558. ; 31:2, s. 175-191 Research review (peer-reviewed)abstract BackgroundExhaustion due to persistent non-traumatic stress (ENTS) is a significant health problem with substantial personal, social, and economic impact. While there are increasing studies of ENTS, there is no international agreement on how it should be diagnosed and treated. This scoping review aimed to map definitions, diagnoses, treatments, outcome measures, and outcomes in psychological treatment studies of ENTS. A further aim was to assess the quality of the treatments and map what change processes are described within ENTS interventions.MethodsA PRISMA-guided scoping review of psychological treatment studies delivered in a clinical setting for ENTS was conducted using the databases of PubMed, PsycINFO, and CINAHL.ResultsOf the 60 studies included, the majority (87%) stemmed from Europe. The most recurrent term for ENTS was burnout, and the diagnosis most often utilized was exhaustion disorder. Several treatments were reported, the most frequent being cognitive behavioral therapy (CBT) (68%). Statistically significant outcomes relevant to ENTS were reported in 65% (n = 39) of the studies, with effect sizes between 0.13 and 1.80. In addition, 28% of the treatments were rated as high quality. The most frequent change processes described were dysfunctional sleep, avoidance, behavioral activation, irrational thoughts and beliefs, worry, perceived competence/positive management, psychological flexibility, and recuperation.ConclusionsWhile several treatments based on CBT show promising results for ENTS, there do not seem to be any uniformly established methods, theoretical models, or change processes. Instead of adopting a monocausal, syndromal, and potentially bio-reductionist perspective on ENTS, a process-based approach to treatment is encouraged.
47.	Collan, Camilla, et al. (author) To capture the child's interest - nurses experiences of 'Saga stories in health talks'. 2024 In: BMC Nursing. - : BioMed Central (BMC). - 1472-6955. ; 23:1 Journal article (peer-reviewed)abstract BACKGROUND: As unhealthy lifestyle habits have been found to be established early in life and often track into adulthood, early preventive initiatives are important. 'Saga Stories in health talks' is a newly developed material that is intended to be used as a support for nurses at child health care (CHC) centers in their health talks with children and parents in Sweden. The aim of this study is to explore how CHC nurses experience the usability of the 'Saga Stories in health talks' material.METHODS: This study used a qualitative design. The material 'Saga Stories in health talks' was tested by 33 CHC nurses working in 11 CHC centers in three regions in Sweden. All CHC nurses were invited to participate in the interviews and 17 agreed. The interviews were transcribed and analysed using content analysis.RESULTS: Three categories and eight sub-categories emerged. The categories were: (1) An appreciated tool suitable for health talks, (2) Illustrations to capture children's interest in the conversation with families, and (3) Barriers and facilitators. Saga Stories in health talks' was experienced by the CHC nurses as an appreciated tool with content highly relevant to what should be discussed during the health talks. The CHC nurses described the material as well-designed with illustrations that helped them capture the child's interest and increase their participation, while still involving the parents. Support from colleagues, the researchers, and managers were seen as important facilitators. Challenges included structural factors such as how and when to best use the material, especially concerning that the 4-year visit contained many other mandatory parts.CONCLUSIONS: This pilot study show that the material 'Saga Stories in health talks' was highly appreciated by CHC nurses and facilitated their health talks with families in CHC. Important aspects with the material were the relevant content and the focus on healthy living habits, as well as the child friendly illustrations. These findings can be used when similar material is developed to facilitate health talks with families in other contexts. Our results also highlight the importance to adjust the implementation of a new material with already established practice and routines.
48.	Corell, Alba, et al. (author) Successful adaptation of twinning concept for global neurosurgery collaborations-a validation study 2024 In: ACTA NEUROCHIRURGICA. - : Springer. - 0001-6268 .- 0942-0940. ; 166:1 Journal article (peer-reviewed)abstract Introduction Globally, many regions have an urgent, unmet need of neurosurgical care. A multi-step neurosurgical twinning technique, International Neurosurgical Twinning Modeled for Africa (INTIMA), was proved to be successful during a previous mission to Neurosurgical Unit, Enugu, Nigeria. The Swedish African Neurosurgical Collaboration (SANC) performed a developmental mission together with the local neurosurgical unit in The Gambia, adopting the INTIMA model.Methods A multidisciplinary team visited for a 2-week collaborative mission at the Neurosurgical Department of the Edward Francis Small Teaching Hospital in Banjul, The Gambia. The mission followed the data of neurosurgical operations during and after the mission as well as about the operations 3 months prior to and after the mission was collected.Results During the mission, a total of 22 operations was carried out, the most common being degenerative spinal conditions (n = 9). In the 3 months following the mission, 43 operations were performed compared to 24 during the 3 months leading up to the mission. The complexity of the performed procedures increased after the mission. An operating microscope (Moller-Wedel) was donated and installed and the neurosurgeons on site underwent training in microneurosurgery. The surgical nurses, nurses at the postoperative ward, and the physiotherapists underwent training. A biomedical engineer serviced multiple appliances and devices improving the patient care on site while training local technicians.Conclusion This study validated the use of the INTIMA model previously described in a mission by Swedish African Neurosurgical Collaboration (SANC). The model is sustainable and produces notable results. The core strength of the model is in the multidisciplinary team securing all the aspects and steps of the neurosurgical care. Installation of an operating microscope opened for further microsurgical possibilities, improving the neurosurgical care in The Gambia.
49.	Cornillet, Martin, et al. (author) The Swedish initiative for the study of Primary sclerosing cholangitis (SUPRIM) 2024 In: eClinicalMedicine. - : ELSEVIER. - 2589-5370. ; 70 Journal article (peer-reviewed)abstract Background Despite more than 50 years of research and parallel improvements in hepatology and oncology, there is still today neither a treatment to prevent disease progression in primary sclerosing cholangitis (PSC), nor reliable early diagnostic tools for the associated hepatobiliary cancers. Importantly, the limited understanding of the underlying biological mechanisms in PSC and its natural history not only affects the identification of new drug targets but implies a lack of surrogate markers that hampers the design of clinical trials and the evaluation of drug efficacy. The lack of easy access to large representative well -characterised prospective resources is an important contributing factor to the current situation. Methods We here present the SUPRIM cohort, a national multicentre prospective longitudinal study of unselected PSC patients capturing the representative diversity of PSC phenotypes. We describe the 10 -year effort of inclusion and follow-up, an intermediate analysis report including original results, and the associated research resource. All included patients gave written informed consent (recruitment: November 2011-April 2016). Findings Out of 512 included patients, 452 patients completed the five-year follow-up without endpoint outcomes. Liver transplantation was performed in 54 patients (10%) and hepatobiliary malignancy was diagnosed in 15 patients (3%). We draw a comprehensive landscape of the multidimensional clinical and biological heterogeneity of PSC illustrating the diversity of PSC phenotypes. Performances of available predictive scores are compared and perspectives on the continuation of the SUPRIM cohort are provided. Interpretation We envision the SUPRIM cohort as an open -access collaborative resource to accelerate the generation of new knowledge and independent validations of promising ones with the aim to uncover reliable diagnostics, prognostic tools, surrogate markers, and new treatment targets by 2040. Funding This work was supported by the Swedish Cancer Society, Stockholm County Council, and the Cancer Research Funds of Radiumhemmet. Copyright (c) 2024 The Author(s). Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
50.	Cornillet, Martin, et al. (author) The Swedish initiative for the study of Primary sclerosing cholangitis (SUPRIM) 2024 In: eClinicalMedicine. - : Elsevier. - 2589-5370. ; 70 Journal article (peer-reviewed)abstract BackgroundDespite more than 50 years of research and parallel improvements in hepatology and oncology, there is still today neither a treatment to prevent disease progression in primary sclerosing cholangitis (PSC), nor reliable early diagnostic tools for the associated hepatobiliary cancers. Importantly, the limited understanding of the underlying biological mechanisms in PSC and its natural history not only affects the identification of new drug targets but implies a lack of surrogate markers that hampers the design of clinical trials and the evaluation of drug efficacy. The lack of easy access to large representative well-characterised prospective resources is an important contributing factor to the current situation.MethodsWe here present the SUPRIM cohort, a national multicentre prospective longitudinal study of unselected PSC patients capturing the representative diversity of PSC phenotypes. We describe the 10-year effort of inclusion and follow-up, an intermediate analysis report including original results, and the associated research resource. All included patients gave written informed consent (recruitment: November 2011–April 2016).FindingsOut of 512 included patients, 452 patients completed the five-year follow-up without endpoint outcomes. Liver transplantation was performed in 54 patients (10%) and hepatobiliary malignancy was diagnosed in 15 patients (3%). We draw a comprehensive landscape of the multidimensional clinical and biological heterogeneity of PSC illustrating the diversity of PSC phenotypes. Performances of available predictive scores are compared and perspectives on the continuation of the SUPRIM cohort are provided.InterpretationWe envision the SUPRIM cohort as an open-access collaborative resource to accelerate the generation of new knowledge and independent validations of promising ones with the aim to uncover reliable diagnostics, prognostic tools, surrogate markers, and new treatment targets by 2040.

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