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1.
  • von Tottleben, Malte, et al. (author)
  • An Integrated Care Platform System (C3-Cloud) for Care Planning, Decision Support, and Empowerment of Patients With Multimorbidity: Protocol for a Technology Trial
  • 2022
  • In: JMIR Research Protocols. - : JMIR Publications. - 1929-0748. ; 11:7
  • Journal article (peer-reviewed)abstract
    • Background: There is an increasing need to organize the care around the patient and not the disease, while considering the complex realities of multiple physical and psychosocial conditions, and polypharmacy. Integrated patient-centered care delivery platforms have been developed for both patients and clinicians. These platforms could provide a promising way to achieve a collaborative environment that improves the provision of integrated care for patients via enhanced information and communication technology solutions for semiautomated clinical decision support.Objective: The Collaborative Care and Cure Cloud project (C3-Cloud) has developed 2 collaborative computer platforms for patients and members of the multidisciplinary team (MDT) and deployed these in 3 different European settings. The objective of this study is to pilot test the platforms and evaluate their impact on patients with 2 or more chronic conditions (diabetes mellitus type 2, heart failure, kidney failure, depression), their informal caregivers, health care professionals, and, to some extent, health care systems.Methods: This paper describes the protocol for conducting an evaluation of user experience, acceptability, and usefulness of the platforms. For this, 2 “testing and evaluation” phases have been defined, involving multiple qualitative methods (focus groups and surveys) and advanced impact modeling (predictive modeling and cost-benefit analysis). Patients and health care professionals were identified and recruited from 3 partnering regions in Spain, Sweden, and the United Kingdom via electronic health record screening.Results: The technology trial in this 4-year funded project (2016-2020) concluded in April 2020. The pilot technology trial for evaluation phases 3 and 4 was launched in November 2019 and carried out until April 2020. Data collection for these phases is completed with promising results on platform acceptance and socioeconomic impact. We believe that the phased, iterative approach taken is useful as it involves relevant stakeholders at crucial stages in the platform development and allows for a sound user acceptance assessment of the final product.Conclusions: Patients with multiple chronic conditions often experience shortcomings in the care they receive. It is hoped that personalized care plan platforms for patients and collaboration platforms for members of MDTs can help tackle the specific challenges of clinical guideline reconciliation for patients with multimorbidity and improve the management of polypharmacy. The initial evaluative phases have indicated promising results of platform usability. Results of phases 3 and 4 were methodologically useful, yet limited due to the COVID-19 pandemic.
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  • Baaz, Mikael, 1966, et al. (author)
  • I Felt a Little Homosexual Today, So I Called in Sick: The Formation of “Reverse Discourse” by Swedish Gay Activists in the 1970s
  • 2022
  • In: Global Society. - : Informa UK Limited. - 1360-0826 .- 1469-798X. ; 36:3, s. 330-346
  • Journal article (peer-reviewed)abstract
    • This article revolves around the legal and epistemic battles around “homosexuality” in Sweden in 1979, which led to the abolition of homosexuality being classified as a “disease”. Among other things, gay activists “called in sick” to the Social Insurance Agency (SIA) and claimed that they were unable to work because they were homosexuals (read as mentally disordered). The phone calls can be understood as a formation of “reverse” discourse; that is, gay people starting to speak on their own behalf, while using the same categories by which they were labelled. By analysing this resistance and a sit-in that was organised at the Swedish National Board of Health and Welfare (NBHW), we conclude that reverse discourse, as a productive yet rupturing practice, is not a single- handed and unaccompanied resistance strategy but materialises as one practice among many in a complex web of resistance and power.
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4.
  • Baaz, Mikael, 1966, et al. (author)
  • Involuntary Resistance
  • 2024
  • In: International Journal of Politics, Culture, and Society. - : Springer Science and Business Media LLC. - 0891-4486 .- 1573-3416. ; 37:1, s. 77-97
  • Journal article (peer-reviewed)abstract
    • This paper problematizes the notion of “intent” through the concept of “involuntary resistance”. Departing from the narratives of employees in nursing homes in Sweden during the Covid-19 pandemic in 2020 and 2021, we suggest that neoliberal norms and a local management that capitalizes on social hierarchies (sex, age, class, etc.) were the context of the strong biopolitical state management that occurred due to the Covid-19 pandemic. The friction between different forms of governing became a seedbed for an involuntary resistance with an unclear intent against the state recommendations. This sheds light upon the need to (re)frame the current dominance of specific types of knowledge that are constructed in the field of resistance. We suggest that new paths of thought are needed—within social sciences—that work towards a wider conceptualizing of resistance, which embraces practices that lie outside the common thought of dissent.
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5.
  • Baaz, Mikael, 1966, et al. (author)
  • Involuntary Resistance
  • 2023
  • In: International Journal of Politics Culture and Society. - : Springer Science and Business Media LLC. - 0891-4486 .- 1573-3416.
  • Journal article (peer-reviewed)abstract
    • This paper problematizes the notion of "intent" through the concept of "involuntary resistance". Departing from the narratives of employees in nursing homes in Sweden during the Covid-19 pandemic in 2020 and 2021, we suggest that neoliberal norms and a local management that capitalizes on social hierarchies (sex, age, class, etc.) were the context of the strong biopolitical state management that occurred due to the Covid-19 pandemic. The friction between different forms of governing became a seedbed for an involuntary resistance with an unclear intent against the state recommendations. This sheds light upon the need to (re)frame the current dominance of specific types of knowledge that are constructed in the field of resistance. We suggest that new paths of thought are needed-within social sciences-that work towards a wider conceptualizing of resistance, which embraces practices that lie outside the common thought of dissent.
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  • Baaz, Mikael, 1966, et al. (author)
  • The ABC of resistance: towards a new analytical framework
  • 2023
  • In: Journal of Political Power. - 2158-379X .- 2158-3803. ; 16:1
  • Journal article (peer-reviewed)abstract
    • Two significant developments – (1) the rapidly changing world order, and (2) significant gaps in current social science scholarship – call for a further exploration of resistance theories. In this paper, we identify some of the gaps and inconsistencies within the current bulk of research, and seek to contribute to the understanding of resistance, its applications and complexity. In short, this paper discusses three interacting and supporting forms of resistance, including various overlaps and interlinkages between them, which together constitute what we would like to call the ABC of resistance; that is, avoidance resistance, breaking resistance, and constructive resistance.
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9.
  • Bergström, Göran, 1964, et al. (author)
  • Body weight at age 20 and in midlife is more important than weight gain for coronary atherosclerosis: Results from SCAPIS.
  • 2023
  • In: Atherosclerosis. - : Elsevier BV. - 1879-1484 .- 0021-9150. ; 373, s. 46-54
  • Journal article (peer-reviewed)abstract
    • Elevated body weight in adolescence is associated with early cardiovascular disease, but whether this association is traceable to weight in early adulthood, weight in midlife or to weight gain is not known. The aim of this study is to assess the risk of midlife coronary atherosclerosis being associated with body weight at age 20, body weight in midlife and body weight change.We used data from 25,181 participants with no previous myocardial infarction or cardiac procedure in the Swedish CArdioPulmonary bioImage Study (SCAPIS, mean age 57 years, 51% women). Data on coronary atherosclerosis, self-reported body weight at age 20 and measured midlife weight were recorded together with potential confounders and mediators. Coronary atherosclerosis was assessed using coronary computed tomography angiography (CCTA) and expressed as segment involvement score (SIS).The probability of having coronary atherosclerosis was markedly higher with increasing weight at age 20 and with mid-life weight (p<0.001 for both sexes). However, weight increase from age 20 until mid-life was only modestly associated with coronary atherosclerosis. The association between weight gain and coronary atherosclerosis was mainly seen in men. However, no significant sex difference could be detected when adjusting for the 10-year delay in disease development in women.Similar in men and women, weight at age 20 and weight in midlife are strongly related to coronary atherosclerosis while weight increase from age 20 until midlife is only modestly related to coronary atherosclerosis.
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10.
  • Björnsson, Bergthor, et al. (author)
  • Digital twins to personalize medicine
  • 2020
  • In: Genome Medicine. - : Springer Science and Business Media LLC. - 1756-994X. ; 12:1
  • Research review (peer-reviewed)abstract
    • Personalized medicine requires the integration and processing of vast amounts of data. Here, we propose a solution to this challenge that is based on constructing Digital Twins. These are high-resolution models of individual patients that are computationally treated with thousands of drugs to find the drug that is optimal for the patient.
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11.
  • Boks, Marije, et al. (author)
  • Increased incidence of late-onset inflammatory bowel disease and microscopic colitis after a Cryptosporidium hominis outbreak
  • 2022
  • In: Scandinavian Journal of Gastroenterology. - : Taylor & Francis Group. - 0036-5521 .- 1502-7708. ; 57:12, s. 1443-1449
  • Journal article (peer-reviewed)abstract
    • OBJECTIVES: In 2010, 27,000 inhabitants (45% of the population) of Östersund, Sweden, contracted clinical cryptosporidiosis after drinking water contaminated with Cryptosporidium hominis. After the outbreak, local physicians perceived that the incidence of inflammatory bowel disease (IBD), including ulcerative colitis (UC), Crohn's disease (CD), and IBD-unclassified, and microscopic colitis (MC) increased. This study assessed whether this perception was correct.MATERIALS AND METHODS: This observational study included adult patients (≥18 years old) from the local health care region who were diagnosed with pathology-confirmed IBD or MC during 2006-2019. We collected and validated the diagnosis, date of diagnosis, age at diagnosis, and sex from the Swedish quality register SWIBREG and electronic patient records. Population data were collected from Statistics Sweden. The incidences for 2006-2010 (pre-outbreak) and 2011-2019 (post-outbreak) were evaluated by negative binomial regression analysis and presented as incidence rate ratios (IRRs). Data were analyzed for IBD, for UC and CD separately, and MC.RESULTS: During the study period, we identified 410 patients with new onset IBD and 155 new cases of MC. Overall, we found a trend toward an increased incidence of IBD post-outbreak (IRR 1.39, confidence interval (CI) 0.99-1.94). In individuals ≥40 years old, the post-outbreak incidence significantly increased for IBD (IRR 1.69, CI 1.13-2.51) and CD (IRR 2.23, CI 1.08-4.62). Post-outbreak incidence of MC increased 6-fold in all age groups (IRR 6.43, CI 2.78-14.87).CONCLUSIONS: The incidence of late-onset IBD and MC increased after the Cryptosporidium outbreak. Cryptosporidiosis may be an environmental risk factor for IBD and MC.
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  • Boks, Marije, et al. (author)
  • Persisting symptoms after Cryptosporidium hominis outbreak : a 10-year follow-up from Östersund, Sweden
  • 2023
  • In: Parasitology Research. - : Springer Nature. - 0932-0113 .- 1432-1955. ; 122:7, s. 1631-1639
  • Journal article (peer-reviewed)abstract
    • In late 2010, an outbreak of Cryptosporidium hominis affected 27,000 inhabitants (45%) of Östersund, Sweden. Previous research shows that abdomen and joint symptoms commonly persist up to 5 years post-infection. It is unknown whether Cryptosporidium is associated with sequelae for a longer duration, how persisting symptoms present over time, and whether sequelae are associated with prolonged infection. In this prospective cohort study, a randomly selected cohort in Östersund was surveyed about cryptosporidiosis symptoms in 2011 (response rate 69.2%). A case was defined as a respondent reporting new diarrhoea episodes during the outbreak. Follow-up questionnaires were sent after 5 and 10 years. Logistic regressions were used to examine associations between case status and symptoms reported after 10 years, with results presented as adjusted odds ratios (aOR) with 95% confidence intervals. Consistency of symptoms and associations with case status and number of days with symptoms during outbreak were analysed using X 2 and Mann–Whitney U tests. The response rate after 10 years was 74% (n = 538). Case status was associated with reporting symptoms, with aOR of ~3 for abdominal symptoms and ~2 for joint symptoms. Cases were more likely to report consistent symptoms. Cases with consistent abdominal symptoms at follow-up reported 9.2 days with symptoms during the outbreak (SD 8.1), compared to 6.6 days (SD 6.1) for cases reporting varying or no symptoms (p = 0.003). We conclude that cryptosporidiosis was associated with an up to threefold risk for reporting symptoms 10 years post-infection. Consistent symptoms were associated with prolonged infection.
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  • Bratt, Ola, 1963, et al. (author)
  • Screening for prostate cancer: evidence, ongoing trials, policies and knowledge gaps
  • 2023
  • In: BMJ Oncology. ; 2:1, s. 1-9
  • Research review (peer-reviewed)abstract
    • Long-term screening with serum prostate-specific antigen (PSA) and systematic prostate biopsies can reduce prostate cancer mortality but leads to unacceptable overdiagnosis. Over the past decade, diagnostic methods have improved and the indolent nature of low-grade prostate cancer has been established. These advances now enable more selective detection of potentially lethal prostate cancer. This non-systematic review summarises relevant diagnostic advances, previous and ongoing screening trials, healthcare policies and important remaining knowledge gaps. Evidence synthesis and conclusions: The strong association between low serum PSA values and minimal long-term risk of prostate cancer death allows for adjusting screening intervals. Use of risk calculators, biomarkers and MRI to select men with a raised PSA value for biopsy and lesion-targeting rather than systematic prostate biopsies reduce the detection of low-grade cancer and thereby overdiagnosis. These improvements recently led the European Union to recommend its member states to evaluate the feasibility and effectiveness of organised screening programmes for prostate cancer. Nonetheless, important knowledge gaps remain such as the performance of modern diagnostic methods in long-term screening programmes and their impact on mortality. The knowledge gaps are currently being addressed in three large randomised screening trials. Population-based pilot programmes will contribute critical practical experience.
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  • De Luca, Vincenzo, et al. (author)
  • Digitally enabled health service for the integrated management of hypertension : A participatory user-centred design process
  • 2021
  • In: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 18:23
  • Journal article (peer-reviewed)abstract
    • This article describes a user-centred approach taken by a group of five procurers to set specifications for the procurement of value-based research and development services for IT-sup-ported integrated hypertension management. The approach considered the unmet needs of patients and health systems of the involved regions. The procurers established a framework for requirements and a solution design consisting of nine building blocks, divided into three domains: service delivery, devices and integration, and health care organisation. The approach included the development of questionnaires, capturing patients’ and professionals’ views on possible system functionalities, and a template collecting information about the organisation of healthcare, professionals involved and existing IT systems at the procurers’ premises. A total of 28 patients diagnosed with hypertension and 26 professionals were interviewed. The interviewees identified 98 functional requirements, grouped in the nine building blocks. A total of nine use cases and their corresponding process models were defined by the procurers’ working group. As result, a digitally enabled integrated approach to hypertension has been designed to allow citizens to learn how to prevent the development of hypertension and lead a healthy lifestyle, and to receive comprehensive, individualised treatment in close collaboration with healthcare professionals.
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  • Despotou, George, et al. (author)
  • Localisation, Personalisation and Delivery of Best Practice Guidelines on an Integrated Care and Cure Cloud Architecture : The C3-Cloud Approach to Managing Multimorbidity
  • 2020
  • In: Digital Personalized Health and Medicine. - : IOS Press. - 9781643680835 - 9781643680828 ; , s. 623-627
  • Conference paper (peer-reviewed)abstract
    • BACKGROUND: C3-Cloud is an integrated care ICT infrastructure offering seamless patient-centered approach to managing multimorbidity, deployed in three European pilot sites. Challenge: The digital delivery of best practice guidelines unified for multimorbidity, customized to local practice, offering the capability to improve patient personalization and benefit.METHOD: C3-Cloud has adopted a co-production approach to developing unified multimorbidity guidelines, by collating and reconciling best practice guidelines for each condition. Clinical and technical teams at pilot sites and the C3-Cloud consortium worked in tandem to create the specification and technical implementation.RESULTS: C3-Cloud offers CDSS for diabetes, renal failure, depression and congenital heart failure, with over 300 rules and checks that deliver four best practice guidelines in parallel, customized for each pilot site.CONCLUSIONS: The process provided a traceable, maintainable and audited digitally delivered collated and reconciled guidelines.
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  • Fjällström, Petter, et al. (author)
  • Adopting standardized cancer patient pathways as a policy at different organizational levels in the Swedish health system
  • 2023
  • In: Health Research Policy and Systems. - : BioMed Central (BMC). - 1478-4505. ; 21:1
  • Journal article (peer-reviewed)abstract
    • Background: Standardized cancer patient pathways as a new policy has been adopted in healthcare to improve the quality of cancer care. Within the health systems, actors at different levels manage the adoption of new policies to develop healthcare. The various actors on different levels play an important role and influence the policy adoption process. Thus, knowledge about how these actors use strategies when adopting cancer patient pathways as a policy in the health system becomes central.Method: The study's aim was to explore how actors at different organizational levels in the health system adopted cancer patient pathways. Our overarching case was the Swedish health system at the national, regional, and local levels. Constructivist Grounded Theory Method was used to collect and analyze qualitative interviews with persons working in organizations directly involved in adopting cancer patient pathways at each level. Twelve individual and nine group interviews were conducted including 53 participants.Results: Organizational actors at three different levels used distinct strategies during the adoption of cancer patient pathways: acting as-missionaries, fixers, and doers. Acting as missionaries consisted of preaching the idea of cancer patient pathways and framing it with a common purpose to agree upon. Acting as fixers entailed creating a space to put cancer patient pathways into practice and overcome challenges to this. Acting as doers comprised balancing breadth and speed in healthcare provision with not being involved in the development of cancer patient pathways for the local context. These strategies were not developed in isolation from the other organizational levels but rather, each level interacted with one another.Conclusions: When adopting new policies, it is important to be aware of the different strategies and actors at various organizational levels in health systems. Even when actors on different levels developed separate strategies, if these contribute to fulfilling the four domains of inter-organizational collaboration, they can work well together to adopt new policies. Our study highlighted that the application of two domains was lacking, which meant that local actors were not sufficiently involved in collaboration, thus constricting the local use and optimization of cancer patient pathways in practice.
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  • Fjällström, Petter, et al. (author)
  • CN59 A meeting between existing practices and new ones in primary healthcare : How nurses adjust work routines to using cancer patient pathways
  • 2021
  • In: Annals of Oncology. - : Elsevier. - 0923-7534 .- 1569-8041. ; 32:Supplement 5, s. S1277-S1277
  • Journal article (peer-reviewed)abstract
    • Background: The aim was to explore how nurses in primary healthcare (PHC) adjust routines using Cancer Patient Pathways (CPP). CPPs are intended to shorten time to diagnosis but unintended consequences can occur for organizations that utilizes them. Furthermore, in Sweden, PHC is the main entrance into healthcare and nursesas first contact, together with physicians’ are important actors for timely diagnosis.Hence, to explore the unintended consequences when using CPPs in PHC is important since it may impact the process of adaption to CPP.Methods: Grounded Theory method was used to collect and analyse qualitative data. Six PHC units were included with a variation in size, staff and location. Data was collected through focus groups with nurses and physicians at each PHC unit, for a total of 41 participants in nine interviews.Results: When previous practices meet new ones, three distinct but connected work routines emerged in PHC and encompassed a dimension ranging from continuing working with existing practice to adapting CPPs in their work. However, two of the work routines were mainly related to nurses and depicted how they continued working broadly with patient needs in the population while adapting CPP to speed up patient flows. Additionally, nurses continued to draw upon their longstanding know-how of prioritizing with alarm symptoms while adapting to work with routines in new ways, while physicians were the ones reorganizing adjusted routines in their units. Lastly, the third work routine generally illustrated physicians dealing with unequal relations in communication with secondary care regarding referral criteria and nurses were not involved in these referrals.Conclusions: PHC units in our study had not been involved in planning the introduction of CPPs, with nurses excluded in particular. Instead, as our results show, nurses developed their own process to manage using CPPs as a way to adjust to the new procedures, with the unintended consequences influencing their process of adaption. Our study suggests that decision-makers in healthcare could make better use of the know-how within PHC, especially nurses expertise, when developing and introducing new tools such as CPPs.
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  • Fjällström, Petter, et al. (author)
  • Merging existing practices with new ones: the adjustment of organizational routines to using cancer patient pathways in primary healthcare
  • 2022
  • In: BMC Health Services Research. - : BioMed Central (BMC). - 1472-6963. ; 22:1
  • Journal article (peer-reviewed)abstract
    • Background: The introduction of new tools can bring unintended consequences for organizational routines. Cancer Patient Pathways (CPP) were introduced into the Swedish healthcare system in 2015 to shorten time to diagnosis and treatment. Primary healthcare (PHC) plays a central role since cancer diagnosis often begins in PHC units. Our study aimed to understand how PHC units adjusted organizational routines to utilizing CPPs.Method: Six PHC units of varied size from both urban and rural areas in northern Sweden were included. Grounded theory method was used to collect and analyse group interviews at each unit. Nine group interviews with nurses and physicians, for a total of 41 participants, were performed between March and November 2019. The interviews focused on CPPs as tools, the PHC units’ routines and providers’ experiences with using CPPs in their daily work.Results: Our analysis captured how PHC units adjusted organizational routines to utilizing CPPs by fusing existing practices with new practices to offer better quality of care. Specifically, three overarching organizational routines within the PHC units were identified. First, Manoeuvring diverse patient needs with easier patient flow, the PHC units handled the diverse needs of the population while simultaneously drawing upon CPPs to ease the patient flow within the healthcare system. Second, (Dis) integrating internal know-how, the PHC units drew upon internal competence even when PHC know-how was not taken into account by those driving the CPP initiative. Third, Coping with unequal relationships toward secondary care, the PHC units dealt with being in an unequal position while adopting CPPs instead further decreased possibilities to influence decision-making between care-levels.Conclusion: Adopting CPPs as a tool within PHC units brought various unintended consequences in organizational routines. Our study from northern Sweden illustrates that the PHC know-how needs to be integrated into the healthcare system to improve the use of new tools as CPP. Further, the relationships between different levels of care should be taken in account when introducing new tools for healthcare. Also, when adopting innovations, unintended consequences need to be further explored empirically in diverse healthcare contexts internationally in order to generate deeper knowledge in the research area.
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  • Fjällström, Petter, et al. (author)
  • Reduction in the diagnostic interval after the introduction of cancer patient pathways for colorectal cancer in northern Sweden
  • 2023
  • In: Scandinavian Journal of Primary Health Care. - : Taylor & Francis. - 0281-3432 .- 1502-7724. ; 41:3, s. 287-296
  • Journal article (peer-reviewed)abstract
    • Objective: To compare the diagnostic interval for patients with colorectal cancer before and after the introduction of cancer patient pathways in northern Sweden.Design: A retrospective study comparing two cohorts (2012 and 2018) of patients diagnosed with colorectal cancer before and after the introduction of cancer patient pathways in 2016.Setting: Three counties in northern Sweden with large sparsely populated areas and some cities (637143 residents ∼5.1 residents/km2).Subjects: Patients were included from the Swedish Cancer Register. Electronic health records reviews were performed and linked to socioeconomic data from Statistics Sweden.Main outcome measures: Differences in the diagnostic intervals, the patient intervals and the characteristics associated with the longest diagnostic intervals and investigations starting at the emergency department.Results: The two cohorts included 411 patients in 2012 and 445 patients in 2018. The median diagnostic interval was reduced from 47 days (IQI 18–99) to 29 days (IQI 9–74) (p < 0.001) after the introduction of cancer patient pathways in general. Though for the cases of cancer in the right-side (ascended) colon, the reduction of the diagnostic interval was not observed and it remained associated with investigations starting at the emergency department.Conclusion: Our results indicate that cancer patient pathways contributed to an improvement in the diagnostic interval for patients with colorectal cancer in general, yet not for patients with cancer in the right-side colon.Implication: In general, cancer patient pathways seem to reduce the diagnostic interval for colorectal cancer but it is not a sufficient solution for all colorectal cancer localisations.
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21.
  • Fjällström, Petter, et al. (author)
  • Reworking routines in primary healthcare : Adapting standarized cancer patient pathways while continuing practice
  • 2021
  • In: Ca-PRI Online Conference 2021. ; , s. 55-55
  • Conference paper (peer-reviewed)abstract
    • Background: The aim was to explore how primary healthcare centers (PHC) had adjusted working routines using Cancer Patient Pathways (CPP). CPPs are intended to shorten time to diagnosis, improve access to care and reduce inequality in cancer care. In addition to these intended changes, CPPs have unintended consequences for organizations that utilizes them. In Sweden, PHCs are particularly affected because they are the first and main entrance into healthcare and also important actors of CPP for timely diagnosis. When Sweden in 2015 introduced CPPs, there was an opportunity to explore unintended consequences of using CPPs in PHCs.Method: Grounded Theory method was used to collect and analyze qualitative data. Six PHCs were included with a variation in size and location. Data was collected through group interviews with nurses and physicians at each PHC, for a total of 41 participants in nine interviews.Results: Our analysis resulted in a process consisting of three distinct but connected work routines. Each routine encompassed a dimension ranging from continuing working as usual to adapting CPPs in their work. The PHCs continued working broadly with patient needs while adapting to speeding up patient flows. Additionally, the PHCs continued to be in a position of dependency on secondary care while adapting to “easier” referral of patients. Lastly, the PHCs continued to draw upon their longstanding know-how while adapting to work with alarm symptoms in new ways.Conclusion: PHCs in our study had not been involved in planning the introduction of CPPs. Instead, as our results show, the PHCs developed their own process to manage using CPPs as a tool. The process illuminated their adeptness to deal with new tools and procedures. Our study suggests that decision-makers in healthcare could make better use of the know-how within PHCs when developing and introducing new tools such as CPPs.
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22.
  • Fureman, Anna-Lena, et al. (author)
  • Comparing Continuous Subcutaneous Insulin Infusion and Multiple Daily Injections in children with type 1 diabetes in Sweden from 2011 to 2016 : a longitudinal study from the Swedish National Quality Register (SWEDIABKIDS)
  • 2021
  • In: Pediatric Diabetes. - : Blackwell Publishing. - 1399-543X .- 1399-5448. ; 22:5, s. 766-775
  • Journal article (peer-reviewed)abstract
    • OBJECTIVE: This study aimed to compare metabolic control measured as hemoglobin A1c (HbA1c), the risk of severe hypoglycemia, and body composition measured as BMI-SDS in a nationwide sample of children and adolescents with type 1 diabetes with continuous subcutaneous insulin infusion (CSII) and multiple daily injections (MDI), respectively.METHODS: Longitudinal data from 2011-2016 were extracted from the Swedish National Quality Register (SWEDIABKIDS) with both cross-sectional (6 years) and longitudinal (4 years) comparisons. Main end points were changes in HbA1c, BMI-SDS, and incidence of severe hypoglycemia.RESULTS: <0.001) and the use of CSII increased in both sexes and all age groups. Mean HbA1c was 0.1% (0.7-1.5 mmol/mol) lower in the CSII treated group. Teenagers, especially girls, using CSII tended to have higher BMI-SDS. There was no difference in the number of hypoglycemias between CSII and MDI over the years 2011-2016.CONCLUSION: There was a small decrease in HbA1c with CSII treatment but of little clinical relevance. Overall, mean HbA1c decreased in both sexes and all age groups without increasing the episodes of severe hypoglycemia, indicating that other factors than insulin method contributed to a better metabolic control.
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23.
  • Fureman, Anna-Lena, et al. (author)
  • Partial clinical remission of Type 1 diabetes in Swedish children : A longitudinal study from the Swedish National Quality Register (SWEDIABKIDS) and the Better Diabetes Diagnosis (BDD) study
  • 2024
  • In: Diabetes Technology & Therapeutics. - : Mary Ann Liebert. - 1520-9156 .- 1557-8593.
  • Journal article (peer-reviewed)abstract
    • AIMS/HYPOTHESIS: To investigate the frequency and characteristics of partial remission in Swedish children with type 1 diabetes and whether insulin delivery method, i.e., continuous subcutaneous insulin infusion (CSII) or multiple daily injections (MDI) affect incidence and duration of this period 2007-2011. Factors that increase the proportion of subjects that enter partial remission and extend this period can improve long-term metabolic control and reduce the risk of severe hypoglycemia, improve quality of life and in the long run reduce late complications.METHODS: Longitudinal data from 2007-2020 were extracted from the Swedish National Quality Register (SWEDIABKIDS) with all reported newly diagnosed children. Data on C-peptide from the participants in the Better Diabetes Diagnosis study (BDD) from 2007-2010 were used. The definition of partial remission was Insulin Dose Adjusted HbA1c (IDAA1c): HbA1c (%)+(4 x total daily insulin dose (U/kg/day)) ≤9.RESULTS: Of the 3,887 patients, 56% were boys. More boys than girls were in partial remission throughout the follow-up period until 24 months after diabetes onset. Fewer children 0-6 years old had partial remission at 3 and 12 months but not at 24 months compared to older age groups. A larger proportion of patients using CSII at 12 and 24 months remained in partial remission compared to those with MDI (37% vs 33%, p=0.02 and 31% vs 27%, p<0.01 respectively). The level of C-peptide was higher in the group with partial remission and mean HbA1c was lower, both p<0.001. Partial remission at 12 months after diabetes onset was associated with CSII (OR:1.39 CI:1.13, 1.71), shorter diabetes duration (OR:0.80 CI:0.76, 0.84) and male sex (OR:1.23 CI:1.04, 1.46)Conclusions/interpretation: Insulin through MDI, longer duration of diabetes, and female sex were associated with lower frequency of partial remission. Use of CSII seem to contribute to longer partial remission among Swedish children with type 1 diabetes.
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24.
  • Fureman, Anna-Lena, et al. (author)
  • Partial clinical remission of type 1 diabetes in Swedish children : a longitudinal study from the Swedish national quality register (SWEDIABKIDS) and the better diabetes diagnosis (BDD) study
  • 2024
  • In: Diabetes Technology & Therapeutics. - : Mary Ann Liebert. - 1520-9156 .- 1557-8593.
  • Journal article (peer-reviewed)abstract
    • Aims/Hypotheses: To investigate the frequency and characteristics of partial remission in Swedish children with type 1 diabetes and whether the insulin delivery method, that is, continuous subcutaneous insulin infusion (CSII) or multiple daily injections (MDIs), affects incidence and duration of this period, 2007-2011. Factors that increase the proportion of subjects who enter partial remission and extend this period can improve long-term metabolic control and reduce the risk of severe hypoglycemia, improve quality of life, and, in the long run, reduce late complications.Methods: Longitudinal data from 2007 to 2020 were extracted from the Swedish National Quality Register (SWEDIABKIDS) with all reported newly diagnosed children. Data on C-peptide from the participants in the Better Diabetes Diagnosis study from 2007 to 2010 were used. The definition of partial remission was insulin dose-adjusted HbA1c: HbA1c (%) + [4 × total daily insulin dose (U/kg/day)] ≤9.Results: Of the 3887 patients, 56% were boys. More boys than girls were in partial remission throughout the follow-up period until 24 months after diabetes onset. Fewer children 0-6 years old had partial remission at 3 and 12 months but not at 24 months compared with older age-groups. A larger proportion of patients using CSII at 12 and 24 months remained in partial remission compared with those with MDI (37% vs. 33%, P = 0.02 and 31% vs. 27%, P = 0.01, respectively). The level of C-peptide was higher in the group with partial remission and mean HbA1c was lower (both P < 0.001). Partial remission at 12 months after diabetes onset was associated with CSII (odds ratio [OR]: 1.39, confidence interval [CI]:1.13, 1.71), shorter diabetes duration (OR: 0.80, CI: 0.76, 0.84), and male sex (OR: 1.23, CI: 1.04, 1.46).Conclusions/Interpretation: Insulin through MDI, longer duration of diabetes, and female sex were associated with lower frequency of partial remission. Use of CSII seems to contribute to longer partial remission among Swedish children with type 1 diabetes.
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25.
  • García-Lorenzo, Borja, et al. (author)
  • Assessment of the effectiveness, socio-economic impact and implementation of a digital solution for patients with advanced chronic diseases : the ADLIFE study protocol
  • 2023
  • In: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 20:4
  • Journal article (peer-reviewed)abstract
    • Due to population ageing and medical advances, people with advanced chronic diseases (ACD) live longer. Such patients are even more likely to face either temporary or permanent reduced functional reserve, which typically further increases their healthcare resource use and the burden of care on their caregiver(s). Accordingly, these patients and their caregiver(s) may benefit from integrated supportive care provided via digitally supported interventions. This approach may either maintain or improve their quality of life, increase their independence, and optimize the healthcare resource use from early stages. ADLIFE is an EU-funded project, aiming to improve the quality of life of older people with ACD by providing integrated personalized care via a digitally enabled toolbox. Indeed, the ADLIFE toolbox is a digital solution which provides patients, caregivers, and health professionals with digitally enabled, integrated, and personalized care, supporting clinical decisions, and encouraging independence and self-management. Here we present the protocol of the ADLIFE study, which is designed to provide robust scientific evidence on the assessment of the effectiveness, socio-economic, implementation, and technology acceptance aspects of the ADLIFE intervention compared to the current standard of care (SoC) when applied in real-life settings of seven different pilot sites across six countries. A quasi-experimental trial following a multicenter, non-randomized, non-concurrent, unblinded, and controlled design will be implemented. Patients in the intervention group will receive the ADLIFE intervention, while patients in the control group will receive SoC. The assessment of the ADLIFE intervention will be conducted using a mixed-methods approach.
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26.
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27.
  • Gehlen, J., et al. (author)
  • First genome-wide association study of esophageal atresia identifies three genetic risk loci at CTNNA3, FOXF1/FOXC2/FOXL1, and HNF1B
  • 2022
  • In: Human Genetics and Genomics Advances. - : Elsevier BV. - 2666-2477. ; 3:2
  • Journal article (peer-reviewed)abstract
    • Esophageal atresia with or without tracheoesophageal fistula (EA/TEF) is the most common congenital malformation of the upper digestive tract. This study represents the first genome-wide association study (GWAS) to identify risk loci for EA/TEF. We used a European case-control sample comprising 764 EA/TEF patients and 5,778 controls and observed genome-wide significant associations at three loci. On chromosome 10q21 within the gene CTNNA3 (p = 2.11 × 10−8; odds ratio [OR] = 3.94; 95% confidence interval [CI], 3.10–5.00), on chromosome 16q24 next to the FOX gene cluster (p = 2.25 × 10−10; OR = 1.47; 95% CI, 1.38–1.55) and on chromosome 17q12 next to the gene HNF1B (p = 3.35 × 10−16; OR = 1.75; 95% CI, 1.64–1.87). We next carried out an esophageal/tracheal transcriptome profiling in rat embryos at four selected embryonic time points. Based on these data and on already published data, the implicated genes at all three GWAS loci are promising candidates for EA/TEF development. We also analyzed the genetic EA/TEF architecture beyond the single marker level, which revealed an estimated single-nucleotide polymorphism (SNP)-based heritability of around 37% ± 14% standard deviation. In addition, we examined the polygenicity of EA/TEF and found that EA/TEF is less polygenic than other complex genetic diseases. In conclusion, the results of our study contribute to a better understanding on the underlying genetic architecture of ET/TEF with the identification of three risk loci and candidate genes. © 2022 The Authors
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28.
  • Hultstrand Ahlin, Cecilia, et al. (author)
  • GPs' perspectives of the patient encounter : in the context of standardized cancer patient pathways
  • 2020
  • In: Scandinavian Journal of Primary Health Care. - : Taylor & Francis. - 0281-3432 .- 1502-7724. ; 38:2, s. 238-247
  • Journal article (peer-reviewed)abstract
    • Objective: We aim to explore how GPs assign meanings and act upon patients’ symptoms in primary care encounters in the context of standardized cancer patient pathways (CPPs).Design, setting and subjects: Thirteen individual interviews were conducted with GPs, at primary healthcare centers (n = 4) in one county in northern Sweden. Interviews were analyzed using grounded theory method. The results were then linked to symbolic interactionism.Main outcome measures: GPs’ perspectives about assigning meanings to patients’ presented symptoms and perception about CPPs.Results: In the encounter, GPs engaged in two simultaneous interactions, one with patients’ symptoms – and the other with CPPs. The core category Disentangling patients’ care trajectory consists of three categories, interpreted as GPs’ strategies developed to assign meaning to symptoms. These strategies are carried out not in a straightforward manner but rather in a conflicting way, illuminating the complexity of GPs’ daily work.Conclusions: Interacting with patients is vital for assigning meaning to presented symptoms. However, nowadays GPs are not only required to interact with patients, they are also required to interact with CPPs. These standardized routines might create pressure and demands on GPs, especially for those experiencing a lack of information about CPPs. Beside of carrying out the challenging patient/person-centered dialogues and interpreting presented symptoms, GPs also need to link the interpreted symptoms to CPPs. Therefore, it is essential that GPs are given opportunities at their workplaces to continuously be informed and be supported in order to practice CPPs and thereby optimize trajectories for patients undergoing cancer diagnostics.
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29.
  • Hultstrand Ahlin, Cecilia, et al. (author)
  • Negotiating bodily sensations between patients and GPs in the context of standardized cancer patient pathways : an observational study in primary care
  • 2020
  • In: BMC Health Services Research. - : BioMed Central. - 1472-6963. ; 20:1
  • Journal article (peer-reviewed)abstract
    • BACKGROUND: How interactions during patient-provider encounters in Swedish primary care construct access to further care is rarely explored. This is especially relevant nowadays since Standardized Cancer Patient Pathways have been implemented as an organizational tool for standardizing the diagnostic process and increase equity in access. Most patients with symptoms indicating serious illness as cancer initially start their diagnostic trajectory in primary care. Furthermore, cancer symptoms are diverse and puts high demands on general practitioners (GPs). Hence, we aim to explore how presentation of bodily sensations were constructed and legitimized in primary care encounters within the context of Standardized Cancer Patient Pathways (CPPs).METHODS: Participant observations of patient-provider encounters (n = 18, on 18 unique patients and 13 GPs) were carried out at primary healthcare centres in one county in northern Sweden. Participants were consecutively sampled and inclusion criteria were i) patients (≥18 years) seeking care for sensations/symptoms that could indicate cancer, or had worries about cancer, Swedish speaking and with no cognitive disabilities, and ii) GPs who met with these patients during the encounter. A constructivist approach of grounded theory method guided the data collection and was used as a method for analysis, and the COREQ-checklist for qualitative studies (Equator guidelines) were employed.RESULTS: One conceptual model emerged from the analysis, consisting of one core category Negotiating bodily sensations to legitimize access, and four categories i) Justifying care-seeking, ii) Transmitting credibility, iii) Seeking and giving recognition, and iv) Balancing expectations with needs. We interpret the four categories as social processes that the patient and GP constructed interactively using different strategies to negotiate. Combined, these four processes illuminate how access was legitimized by negotiating bodily sensations.CONCLUSIONS: Patients and GPs seem to be mutually dependent on each other and both patients' expertise and GPs' medical expertise need to be reconciled during the encounter. The four social processes reported in this study acknowledge the challenging task which both patients and primary healthcare face. Namely, negotiating sensations signaling possible cancer and further identifying and matching them with the best pathway for investigations corresponding as well to patients' needs as to standardized routines as CPPs.
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30.
  • Hultstrand Ahlin, Cecilia, 1990-, et al. (author)
  • The association between sociodemographic factors and time to diagnosis for colorectal cancer in northern Sweden
  • 2022
  • In: European Journal of Cancer Care. - : John Wiley & Sons. - 0961-5423 .- 1365-2354. ; 31:6
  • Journal article (peer-reviewed)abstract
    • OBJECTIVES: This study examined whether sociodemographic factors, including distance to hospital, were associated with differences in the diagnostic interval and the treatment interval for colorectal cancer in northern Sweden.METHODS: Data were retrieved from the Swedish cancer register on patients (n = 446) diagnosed in three northern regions during 2017-2018, then linked to data from Statistics Sweden and medical records. Also, Google maps was used to map the distance between patients' place of residence and nearest hospital. The different time intervals were analysed using Mann-Whitney U-test and Cox regression.RESULTS: Differences in time to diagnosis were found between groups for income and distance to hospital, favouring those with higher income and shorter distance. The unadjusted regression analysis showed higher income to be associated with more rapid diagnosis (HR 1.004, CI 1.001-1.007). This association remained in the fully adjusted model for income (HR 1.004, CI 1.000-1.008), but not for distance. No differences between sociodemographic groups were found in the treatment interval.CONCLUSION: Higher income and shorter distance to hospital were in the unadjusted models associated with shorter time to diagnosis for patients with CRC in northern Sweden. The association remained for income when adjusting for other variables even though the difference was small.
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31.
  • Hultstrand, Cecilia, 1990- (author)
  • Creating access to cancer care : an exploration of patient-provider encounters in primary care, and sociodemographic factors
  • 2021
  • Doctoral thesis (other academic/artistic)abstract
    • Background: Access to care is widely discussed in both research and practice. However, previous research about access to care has mainly focused on individual behaviors of seeking care, and theories about access have mostly focused on quantifiable dimensions, such as supply and demand. Thus, the possibility that the patient–provider interaction may have importance for patients’ access to further care has not been thoroughly explored. Additionally, time to diagnosis and treatment is an important outcome measure and quality indicator related to access to care.Aim: The overall aim was to explore how access to cancer care is created through patient–provider encounters in primary care, and whether sociodemographic factors are related to access to care, after the introduction of Standardized Cancer Patient Pathways (CPPs).Methods: A combination of different methodologies was applied for collecting data, such as participant observations and interviews, as well as data collection from medical records reviews and registers. Initially, primary care encounters between patients seeking care for symptoms that cause suspicion of cancer, that is, alarm symptoms, and their physicians were observed (study I). These physicians and patients were then invited to participate in individual interviews (studies II & III). Lastly, medical records reviews were performed and linked with data from the Swedish Cancer Register on patients diagnosed with colorectal cancer (CRC), and with data from Statistics Sweden and Google Maps (study IV). From a social constructivist perspective, the qualitative data were analyzed using grounded theory method (I & II) and thematic analysis (III). The quantitative data were analyzed descriptively, and analytically using Cox regression (IV).Results: Access is created through interaction in the patient–provider encounter, and is mirrored through processes of negotiating, embodying roles, and adhering to norms. Patients and physicians create access by negotiating the legitimacy of symptoms through processes characterized by dependency, credibility, and reciprocity (I). Second, physicians create access while being pulled between patients and standardized templates, which illuminates the tension between the responsibility physicians have towards their patients and the healthcare organization. It is therefore challenging for physicians to engage in person/patient-centered dialogues, interpret presented symptoms, and match them with standardized criteria (II). Third, standardization seems to oversimplify the complexity that underlies patients’ interaction with healthcare, downplaying the individual uniqueness of each person’s health problem, situation, and needs. Patients experience a need to act as both sellers and customers when interacting with physicians in primary care and when negotiating symptoms while creating access (III). Lastly, even though sociodemographic factors might have impact on the interaction during encounters, sociodemographic factors, such as income, education, and distance to hospital, do not seem to be related to time to diagnosis and treatment for patients with CRC in the study regions (IV).Conclusion: Interaction during encounters has importance for patients’ access to care, which illuminates the significance of reconciling the patient and the provider perspectives. Patients perceive demands on themselves when presenting their symptoms and use different strategies in order to legitimize these. This seems particularly challenging if symptoms are diffuse. Physicians have the responsibility to assess these symptoms and match them with criteria for CPP-referrals, criteria which are not always easy to access and apply. Furthermore, access measured as time to diagnosis and treatment among patients diagnosed with CRC in the study regions was not related to differences in sociodemographic factors.Additionally, this thesis demonstrates the importance for physicians to acknowledge the uniqueness of each patient during encounters, to see, listen, and confirm, while operationalizing their medical expertise in order to identify suspected cancer. Such professional skills seem necessary during patient–provider encounters in primary care. Consequently, this thesis contributes to the existing body of literature by recognizing that interaction inevitably affects access to (cancer) care.
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32.
  • Hultstrand, Cecilia, et al. (author)
  • Shifting between roles of a customer and a seller – patients’ experiences of the encounter with primary care physicians when suspicions of cancer exist
  • 2021
  • In: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis Group. - 1748-2623 .- 1748-2631. ; 16:1
  • Journal article (peer-reviewed)abstract
    • Purpose: Sweden has tried to speed up the process of early cancer detection by standardization of care. This increased focus on early cancer detection provides people with a conflicting norm regarding the importance of recognizing possible cancer symptoms and the responsibility of not delaying seeking care.Based on existing norms about patients’ responsibility and care seeking, this study explores how patients experience encounters with primary care physicians when they seek care for symptoms potentially indicating cancer.Methods: Thirteen semi-structured interviews were conducted with patients receiving care for symptoms indicative of cancer in one county in northern Sweden. Data was analysed with thematic analysis.Results: The common notion of describing patients as customers in a healthcare context does not sufficiently capture all aspects of what counts as being a person seeking care. Instead, people interacting with primary care face a twofold role in where they are required to take the role not only of customer but also of seller. Consequently, people shift between these two roles in order to legitimize their care seeking.Conclusions: Standardization oversimplifies the complexity underlying patients’ experience of care seeking and interaction with healthcare. Hence, healthcare must acknowledge the individual person within a standardized system.
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33.
  • Häggström, Henrik, et al. (author)
  • Framtidens säkerhetstjänst i totalförsvaret
  • 2024
  • Book (other academic/artistic)abstract
    • Mot bakgrund av en breddad och allt mer komplex hotbild mot Sverige och en ambition att stärka den svenska totalförsvarsförmågan har regeringen och Regeringskansliet på senare år skjutit till nya medel och försvarsanslag till det militära och civila försvaret, inklusive den militära Säkerhetstjänsten. De har även tagit fram ett antal nya lagar och regler som på olika sätt syftar till att vägleda säkerhetstjänstens verksamhet och stärka landets motståndskraft mot olika säkerhetshot inom ramen för totalförsvaret.Denna antologi har till uppgift att utifrån olika perspektiv analysera hur moderna hotbilder, ny teknik, lagstiftning, natomedlemskap och krav på samverkan med andra myndigheter och företag kommer påverka den militära säkerhetstjänstens och säkerhetsunderrättelsetjänstens verksamhet i framtiden. Antologin är skriven av några av Sveriges ledande experter på området i syfte att beskriva de utmaningar som den militära säkerhetstjänsten och säkerhetsunderrättelsetjänsten står inför samtidigt som totalförsvaret och krisberedskapen i Sverige återuppbyggs.Några av de frågor som ställs i antologin är hur och i vilken utsträckning det försämrade säkerhetsläget i vårt närområde, ny säkerhetsskyddslagstiftning, ambitionen att stärka det svenska totalförsvaret och Sveriges medlemskap i Nato kommer leda till att säkerhetstjänstens arbetsuppgifter förändras i framtiden? Slutsatserna från denna antologi är säkerhetstjänsten och säkerhetsunderrättelsetjänsterna i Sverige står inför ett paradigmskifte där det kommer vara nödvändigt att modernisera organisationen och implementera ny teknik för att anpassa sig till den digitala eran. Även vikten av intensifierad internationell samverkan kommer spela stor roll för säkerhetstjänstens möjligheter att bedriva ett effektivt arbete på nationell nivå i framtiden. Det multilaterala samarbetet är här för att stanna även om det är svårt och bygger på förtroenden mellan stater som inte alltid finns.
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34.
  • Högberg, Cecilia, et al. (author)
  • Diagnosing colorectal cancer in primary care : cohort study in Sweden of qualitative faecal immunochemical tests, haemoglobin levels, and platelet counts
  • 2020
  • In: British Journal of General Practice. - London : Royal College of General Practitioners. - 0960-1643 .- 1478-5242. ; 70:701, s. E843-E851
  • Journal article (peer-reviewed)abstract
    • Background Colorectal cancer (CRC) diagnostics are challenging in primary care and reliable diagnostic aids are desired. Qualitative faecal immunochemical tests (FITs) have been used for suspected CRC in Sweden since the mid-2000s, but evidence regarding their effectiveness is scarce. Anaemia and thrombocytosis are both associated with CRC. Aim To evaluate the usefulness of qualitative FITs requested for symptomatic patients in primary care, atone and combined with findings of anaemia and thrombocytosis, in the diagnosis of CRC. Design and setting A population-based cohort study using electronic health records and data from the Swedish Cancer Register, covering five Swedish regions. Method Patients aged >= 18 years in the five regions who had provided FITs requested by primary care practitioners from 1 January 2015 to 31 December 2015 were identified. FIT and blood-count data were registered and all CRC diagnoses made within 2 years were retrieved. Diagnostic measurements were calculated. Results In total, 15 789 patients provided FITs (four different brands); of these patients, 304 were later diagnosed with CRC. Haemoglobin levels were available for 13 863 patients, and platelet counts for 10 973 patients. Calculated for the different FIT brands only, the sensitivities for CRC were 81.6%-100%; specificities 65.7%-79.5%: positive predictive values 4.7%-8.1%; and negative predictive values 99.5%-100%. Calculated for the finding of either a positive FIT or anaemia, the sensitivities increased to 88.9-100%. Adding thrombocytosis did not further increase the diagnostic performance. Conclusion Qualitative FITs requested in primary care seem to be useful as rule in tests for referral when CRC is suspected. A negative FIT and no anaemia indicate a low risk of CRC.
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35.
  • Högberg, Cecilia, et al. (author)
  • Patient-reported and doctor-reported symptoms when faecal immunochemical tests are requested in primary care in the diagnosis of colorectal cancer and inflammatory bowel disease : a prospective study
  • 2020
  • In: BMC Family Practice. - : BioMed Central. - 1471-2296. ; 21:1
  • Journal article (peer-reviewed)abstract
    • Background: Rectal bleeding and a change in bowel habits are considered to be alarm symptoms for colorectal cancer and they are also common symptoms for inflammatory bowel disease. However, most patients with these symptoms do not have any of these diseases. Faecal immunochemical tests (FITs) for haemoglobin are used as triage tests in Sweden and other countries but little is known about the symptoms patients have when FITs are requested.Objective: Firstly, to determine patients’ symptoms when FITs are used as triage tests in primary care and whether doctors record the symptoms that patients report, and secondly to evaluate the association between symptoms, FIT results and possible prediction of colorectal cancer or inflammatory bowel disease.Methods and materials: This prospective study included 364 consecutive patients for whom primary care doctors requested a FIT. Questionnaires including gastrointestinal symptoms were completed by patients and doctors.Results: Concordance between symptoms reported from patients and doctors was low. Rectal bleeding was recorded by 43.5% of patients versus 25.6% of doctors, FITs were negative in 58.3 and 52.7% of these cases respectively. The positive predictive value (PPV) of rectal bleeding recorded by patients for colorectal cancer or inflammatory bowel disease was 9.9% (95% confidence interval [CI] 5.2–14.7); for rectal bleeding combined with a FIT the PPV was 22.6% (95% CI 12.2–33.0) and the negative predictive value (NPV) was 98.9% (95% CI 96.7–100). For patient-recorded change in bowel habits the PPV was 6.1% (95% CI 2.4–9.8); for change in bowel habits combined with a FIT the PPV was 18.2% (95% CI 9.1–30.9) and the NPV 100% (95% CI 90.3–100).Conclusions: Doctors should be aware that, during consultations, they do not record all symptoms experienced by patients. FITs requested in primary care, when found positive, may potentially be of help in prioritising referrals, also when patients present with rectal bleeding or change in bowel habits.
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36.
  • Högberg, Cecilia, et al. (author)
  • Qualitative faecal immunochemical tests (FITs) for diagnosing colorectal cancer in patients with histories of rectal bleeding in primary care : a cohort study
  • 2020
  • In: International Journal of Colorectal Disease. - : Springer. - 0179-1958 .- 1432-1262. ; 35, s. 2035-2040
  • Journal article (peer-reviewed)abstract
    • Background Rectal bleeding is considered an alarm symptom for colorectal cancer (CRC) but it is common and mostly caused by benign conditions. Qualitative faecal immunochemical tests (FITs) for occult blood have been used as diagnostic aids for many years in Sweden when CRC is suspected. The study aimed to evaluate the usefulness of FITs requested by primary care physicians for patients with and without histories of rectal bleeding, in the diagnosis of CRC. Methods Results of all FITs requested in primary care for symptomatic patients in the orebro region during 2015 were retrieved. Data on each patient's history of rectal bleeding was gathered from electronic health records. Patients diagnosed with CRC within 2 years were identified from the Swedish Cancer Register. The analysis focused on three-sample FITs, the customary FIT in Sweden. Results A total of 4232 patients provided three-sample FITs. Information about the presence/absence of rectal bleeding was available for 2027 patients, of which 59 were diagnosed with CRC. For 606 patients with the presence of rectal bleeding, the FIT showed sensitivity 96.2%, specificity 60.2%, positive predictive value 9.8% (95% CI 6.1-13.4) and negative predictive value 99.7% (95% CI 99.2-100) for CRC. For 1421 patients without rectal bleeding, the corresponding figures were 100%, 73.6%, 8.3% (95% CI 5.6-10.9) and 100% (95% CI 99.6-100). Conclusion The diagnostic performance of a qualitative three-sample FIT provided by symptomatic patients in primary care was similar for those with and without a history of rectal bleeding. FITs seem useful for prioritising patients also with rectal bleeding for further investigation.
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37.
  • Högberg, Cecilia, et al. (author)
  • Use of faecal immunochemical tests common in patients with suspected colorectal cancer but unrelated to travel distance to secondary care : a population-based study from Swedish primary care
  • 2022
  • In: Scandinavian Journal of Primary Health Care. - : Taylor & Francis Group. - 0281-3432 .- 1502-7724. ; 40:4, s. 459-465
  • Journal article (peer-reviewed)abstract
    • Background Evidence is increasing for the use of faecal immunochemical tests (FITs) for occult blood as diagnostic tools when colorectal cancer can be suspected. FITs have been used for this purpose in Swedish primary care since around 2005 despite absence of supporting guidelines. To our knowledge, the extent of this use has not been studied. Objective To investigate the use of FITs as diagnostic tools, and if the use was related to patient age, sex and travel time from primary care to diagnostic facilities in secondary care. Design Population-based retrospective study using data from electronic health records. Setting and subjects Patients >= 18 years that provided FITs in primary care in five Swedish health care regions during 2015. Driving times from their primary care centres to secondary care were calculated. Main outcome measures The proportion of patients that provided FITs was calculated for each region, different age intervals and grouped driving times. Results 18,913 patients provided FITs. The proportion of listed patients in the five regions that provided FITs increased with age: 0.86-1.2% for ages <65 years, 3.6-4.1% for ages 65-79 years and 3.8-6.1% for ages >= 80 years. Differences between the regions were small. There was no overall correlation between the proportion of patients that provided FITs and driving time to secondary care. Conclusion FITs were used extensively in Swedish primary care with a higher use in older age groups. There was no tendency towards a higher use of FITs at primary care centres with longer driving times to secondary care.
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38.
  • Josefsson, Andreas, 1979-, et al. (author)
  • Performance of 4Kscore as a Reflex Test to Prostate-specific Antigen in the GÖTEBORG-2 Prostate Cancer Screening Trial
  • 2024
  • In: European Urology. - : Elsevier. - 0302-2838 .- 1873-7560.
  • Journal article (peer-reviewed)abstract
    • Background and objective: We investigated whether adding 4Kscore as a reflex test to prostate-specific antigen (PSA) could improve the screening algorithm for prostate cancer (PC). Methods: In the GÖTEBORG-2 PC screening trial, 38 000men (50–60 yr) were invited to PSA testing and, if elevated, followed by magnetic resonance imaging (MRI). For 571 men with PSA ≥3.0 ng/ml and evaluable outcomes, 4Kscore was calculated. The performance using a prespecified 4Kscore cutoff of 7.5% was evaluated. Key findings and limitations: The area under the curve for 4Kscore to identify intermediate- and high-risk PC was 0.84 (95% confidence interval 0.79–0.89), and the positive predictive value, and negative predictive value were 15% (0.12–0.20) and 99% (97–100%), respectively. Of the 54 men diagnosed with intermediate- or high-grade PC, two had a 4Kscore cutoff below 7.5%, both with organ-confined intermediate-risk PC. Per 1000 men with elevated PSA, adding 4Kscore would have resulted in avoidance of MRI for 408 (41%) men, biopsies for 95 (28% reduction) men, and diagnosis of 23 low-grade cancers (23% reduction) while delaying the diagnosis of four men with intermediate-grade cancers (4%). Conclusions and clinical implications: Including 4Kscore as a reflex test for men with elevated PSA reduces the need for MRI and biopsy markedly, and results in less overdiagnosis of low-grade PC at the cost of delaying the diagnosis of intermediate-grade PC in a few men. These results add further evidence for including new blood-based biomarkers in addition to PSA to improve the harm and benefit ratio of PC screening and reduce the need for resource-demanding MRI and biopsies. Patient summary: In this study, 4Kscore, a blood-based biomarker, as a reflex test for men with elevated prostate-specific antigen (PSA), reduces the need for magnetic resonance imaging and biopsy. These results support the inclusion of new blood-based biomarkers in addition to PSA.
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39.
  • Jung Lee, Eun Jung, et al. (author)
  • Analysis of expression profiling data suggests explanation for difficulties in finding biomarkers for nasal polyps
  • 2020
  • In: Rhinology. - : INT RHINOLOGIC SOC. - 0300-0729 .- 1996-8604. ; 58:4, s. 360-367
  • Journal article (peer-reviewed)abstract
    • Background: Identification of clinically useful biomarkers for Nasal Polyposis in chronic rhinosinusitis (CRSwNP) has proven difficult. We analyzed gene expression profiling data to find explanations for this. Methods:We analyzed mRNA expression profiling data, GSE36830, of six uncinate tissues from healthy controls and six NP from CRSwNP patients. We performed Ingenuity Pathway Analysis (IPA) of differentially expressed genes to identify pathways and predicted upstream regulators. Results: We identified 1,608 differentially expressed genes and 177 significant pathways, of which Th1 and Th2 activation pathway and leukocyte extravasation signaling were most significant. We identified 75 upstream regulators whose activity was predicted to be upregulated.These included regulators of known pathogenic and therapeutic relevance, like IL-4. However, only seven of the 75 regulators were actually differentially expressed in NP, namely CSF1, TYROBP, CCL2, CCL11, SELP, ADORA3, ICAM1. Interestingly, these did not include IL-4, and four of the seven were receptors. This suggested a potential explanation for the discrepancy between the predicted and observed expression levels of the regulators, namely that the receptors, and not their ligands, were upregulated. Indeed, we found that 10 receptors of key predicted upstream regulators were upregulated, including IL4R. Conclusion: Our findings indicate that the difficulties in finding specific biomarkers for CRSwNP depend on the complex underlying mechanisms, which include multiple pathways and regulators, each of which may be subdivided into multiple components such as ligands, soluble and membrane-bound receptors. This suggests that combinations of biomarkers may be needed for CRSwNP diagnostics.
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40.
  • Jung Lee, Eun Jung, et al. (author)
  • Bulk and single cell transcriptomic data indicate that a dichotomy between inflammatory pathways in peripheral blood and arthritic joints complicates biomarker discovery
  • 2020
  • In: Cytokine. - : ACADEMIC PRESS LTD- ELSEVIER SCIENCE LTD. - 1043-4666 .- 1096-0023. ; 127
  • Journal article (peer-reviewed)abstract
    • Background: Unbiased studies using different genome-wide methods have identified several novel biomarkers for diagnosis and treatment response in Rheumatoid Arthritis (RA). However, clinical translation has proven difficult. Here, we hypothesized that one reason could be that inflammatory responses in peripheral blood are different from those in the arthritic joint. Methods: We performed meta-analysis of gene expression microarray data from synovium, whole blood cells (WBC), peripheral blood mononuclear cells (PBMC), and CD4+ T cells from patients with RA and healthy controls in order to identify overlapping pathways, upstream regulators and potential biomarkers. We also analyzed single cell RNA-sequencing (scRNA-seq) data from peripheral blood and whole joints from a mouse model of antigen-induced arthritis. Results: Analyses of two profiling data sets from synovium from RA patients and healthy controls all showed significant activation of pathways with known pathogenic relevance, such as the Th1 pathway, the role of NFAT in regulation of the immune response, dendritic cell maturation, iCOS-iCOSL signaling in T helper cells, Fc gamma receptor-mediated phagocytosis, interferon signaling, Cdc42 signaling, and cytotoxic T lymphocyte-mediated apoptosis. The most activated upstream regulators included TNF, an important drug target, as well as IFN-gamma and CD40LG, all of which are known to play important pathogenic roles in RA. The differentially expressed genes from synovium included several potential biomarkers, such as CCL5, CCL13, CCL18, CX3CL1, CXCL6, CXCL9, CXCL10, CXCL13, ILLS, IL32, IL1RN, SPP1, and TNFSF11. By contrast, microarray studies of WBC, PBMC and CD4+ T cells showed variable pathways and limited pathway overlap with synovium. Similarly, scRNA-seq data from a mouse model of arthritis did not support that inflammatory responses in peripheral blood reflect those in the arthritic joints. These data showed pathway overlap between mouse joint cells and synovium from patients with RA, but not with cells in peripheral blood. Conclusions: Our findings indicate a dichotomy between gene expression changes, pathways, upstream regulators and biomarkers in synovium and cell types in peripheral blood, which complicates identification of biomarkers in blood.
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41.
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42.
  • Jutterström, Lena, 1965-, et al. (author)
  • Awareness of cardiovascular risk among persons with type 2 diabetes : a qualitative study
  • 2024
  • In: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 19:1
  • Journal article (peer-reviewed)abstract
    • PURPOSE: To describe the process of becoming aware of and acting on personal cardiovascular (CVD) risk in type 2 diabetes (T2D).METHOD: A purposive sample of 14 persons living with T2D participated in semi-structured, open-ended, in-dept interviews. The interviews were analysed with grounded theory.RESULT: The analysis identified the core category "Balancing emotions, integrating knowledge and understanding to achieve risk awareness and act on it." Five categories describe the movement from not being aware of the risk of cardiovascular disease (CVD) to becoming aware of this risk and taking action to reduce it. Persons with T2D need to transform their knowledge and experience of CVD risk and incorporate it in their individual situations. Emotional and existential experiences of CVD risk can lead to awareness about the severity of the condition and contribute to increased motivation for self-management. However, an overly high emotional response can be overwhelming and may result in insufficient self-management.CONCLUSION: Persons with T2D seemed not to fully grasp their increased risk of CVD or recognize that self-management activities were aimed at reducing this risk. However, their awareness of CVD risk gradually increased as they came to understand the severity of T2D and became more emotionally and existentially engaged.
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43.
  • Ku, Anson, et al. (author)
  • High-Throughput and Automated Acoustic Trapping of Extracellular Vesicles to Identify microRNAs With Diagnostic Potential for Prostate Cancer
  • 2021
  • In: Frontiers in Oncology. - : Frontiers Media SA. - 2234-943X. ; 11
  • Journal article (peer-reviewed)abstract
    • Molecular profiling of extracellular vesicles (EVs) offers novel opportunities for diagnostic applications, but the current major obstacle for clinical translation is the lack of efficient, robust, and reproducible isolation methods. To bridge that gap, we developed a microfluidic, non-contact, and low-input volume compatible acoustic trapping technology for EV isolation that enabled downstream small RNA sequencing. In the current study, we have further automated the acoustic microfluidics-based EV enrichment technique that enables us to serially process 32 clinical samples per run. We utilized the system to enrich EVs from urine collected as the first morning void from 207 men referred to 10-core prostate biopsy performed the same day. Using automated acoustic trapping, we successfully enriched EVs from 199/207 samples (96%). After RNA extraction, size selection, and library preparation, a total of 173/199 samples (87%) provided sufficient materials for next-generation sequencing that generated an average of 2 × 106 reads per sample mapping to the human reference genome. The predominant RNA species identified were fragments of long RNAs such as protein coding and retained introns, whereas small RNAs such as microRNAs (miRNA) accounted for less than 1% of the reads suggesting that partially degraded long RNAs out-competed miRNAs during sequencing. We found that the expression of six miRNAs was significantly different (Padj < 0.05) in EVs isolated from patients found to have high grade prostate cancer [ISUP 2005 Grade Group (GG) 4 or higher] compared to those with GG3 or lower, including those with no evidence of prostate cancer at biopsy. These included miR-23b-3p, miR-27a-3p, and miR-27b-3p showing higher expression in patients with GG4 or high grade prostate cancer, whereas miR-1-3p, miR-10a-5p, and miR-423-3p had lower expression in the GG4 PCa cases. Cross referencing our differentially expressed miRNAs to two large prostate cancer datasets revealed that the putative tumor suppressors miR-1, miR-23b, and miR-27a are consistently deregulated in prostate cancer. Taken together, this is the first time that our automated microfluidic EV enrichment technique has been found to be capable of enriching EVs on a large scale from 900 μl of urine for small RNA sequencing in a robust and disease discriminatory manner.
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44.
  • Köpsén, Sofia, et al. (author)
  • Midwives' and diabetes nurses' experience of screening and care of women with gestational diabetes mellitus : a qualitative interview study
  • 2023
  • In: Nursing Research and Practice. - : Hindawi Publishing Corporation. - 2090-1429 .- 2090-1437. ; 2023
  • Journal article (peer-reviewed)abstract
    • Background: Gestational diabetes mellitus (GDM) is increasing and is associated with adverse outcomes for both mother and child. The metabolic demands of pregnancy can reveal a predisposition for type 2 diabetes mellitus (T2DM), and women with a history of GDM are more likely to develop T2DM than women with normoglycemic pregnancies.Aim: The aim of this study was to explore midwives' and diabetes nurses' experience of their role in screening, care, and follow-up of women with gestational diabetes mellitus and, further, to explore their opinions and thoughts about existing routines and guidelines.Method: Individual interviews were performed with ten diabetes nurses and eight midwives working in primary and special care. Qualitative content analysis was done according to Graneheim and Lundman.Results: The analysis of the interviews resulted in the overall theme "An act of balance between normalcy and illness, working for motivation with dilemmas throughout the chain of health care."Difficulties in carrying out the important task of handling GDM while at the same time keeping the pregnancy in focus were central. Women were described as highly motivated to maintain a healthy lifestyle during pregnancy with the baby in mind, but it seemed difficult to maintain this after delivery, and compliance with long-term follow-up with the aim of reducing the risk of T2DM was low. The women came to the first follow-up but did not continue with later contact. This was at a time when the women felt healthy and were focusing on the baby and not themselves. A lack of cooperation and easy access to a dietician and physiotherapist were pointed out as well as a wish for resources such as group activities and multiprofessional teams.
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45.
  • Li, Xinxiu, et al. (author)
  • A dynamic single cell-based framework for digital twins to prioritize disease genes and drug targets
  • 2022
  • In: Genome Medicine. - : BMC. - 1756-994X. ; 14:1
  • Journal article (peer-reviewed)abstract
    • Background Medical digital twins are computational disease models for drug discovery and treatment. Unresolved problems include how to organize and prioritize between disease-associated changes in digital twins, on cellulome- and genome-wide scales. We present a dynamic framework that can be used to model such changes and thereby prioritize upstream regulators (URs) for biomarker- and drug discovery. Methods We started with seasonal allergic rhinitis (SAR) as a disease model, by analyses of in vitro allergen-stimulated peripheral blood mononuclear cells (PBMC) from SAR patients. Time-series a single-cell RNA-sequencing (scRNA-seq) data of these cells were used to construct multicellular network models (MNMs) at each time point of molecular interactions between cell types. We hypothesized that predicted molecular interactions between cell types in the MNMs could be traced to find an UR gene, at an early time point. We performed bioinformatic and functional studies of the MNMs to develop a scalable framework to prioritize UR genes. This framework was tested on a single-cell and bulk-profiling data from SAR and other inflammatory diseases. Results Our scRNA-seq-based time-series MNMs of SAR showed thousands of differentially expressed genes (DEGs) across multiple cell types, which varied between time points. Instead of a single-UR gene in each MNM, we found multiple URs dispersed across the cell types. Thus, at each time point, the MNMs formed multi-directional networks. The absence of linear hierarchies and time-dependent variations in MNMs complicated the prioritization of URs. For example, the expression and functions of Th2 cytokines, which are approved drug targets in allergies, varied across cell types, and time points. Our analyses of bulk- and single-cell data from other inflammatory diseases also revealed multi-directional networks that showed stage-dependent variations. We therefore developed a quantitative approach to prioritize URs: we ranked the URs based on their predicted effects on downstream target cells. Experimental and bioinformatic analyses supported that this kind of ranking is a tractable approach for prioritizing URs. Conclusions We present a scalable framework for modeling dynamic changes in digital twins, on cellulome- and genome-wide scales, to prioritize UR genes for biomarker and drug discovery.
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46.
  • Li, Xinxiu, et al. (author)
  • Meta-Analysis of Expression Profiling Data Indicates Need for Combinatorial Biomarkers in Pediatric Ulcerative Colitis
  • 2020
  • In: Journal of Immunology Research. - : HINDAWI LTD. - 2314-8861 .- 2314-7156. ; 2020
  • Journal article (peer-reviewed)abstract
    • Background. Unbiased studies using different genome-wide methods have identified a great number of candidate biomarkers for diagnosis and treatment response in pediatric ulcerative colitis (UC). However, clinical translation has been proven difficult. Here, we hypothesized that one reason could be differences between inflammatory responses in an inflamed gut and in peripheral blood cells. Methods. We performed meta-analysis of gene expression microarray data from intestinal biopsies and whole blood cells (WBC) from pediatric patients with UC and healthy controls in order to identify overlapping pathways, predicted upstream regulators, and potential biomarkers. Results. Analyses of profiling datasets from colonic biopsies showed good agreement between different studies regarding pathways and predicted upstream regulators. The most activated predicted upstream regulators included TNF, which is known to have a key pathogenic and therapeutic role in pediatric UC. Despite this, the expression levels of TNF were increased in neither colonic biopsies nor WBC. A potential explanation was increased expression of TNFR2, one of the membrane-bound receptors of TNF in the inflamed colon. Further analyses showed a similar pattern of complex relations between the expression levels of the regulators and their receptors. We also found limited overlap between pathways and predicted upstream regulators in colonic biopsies and WBC. An extended search including all differentially expressed genes that overlapped between colonic biopsies and WBC only resulted in identification of three potential biomarkers involved in the regulation of intestinal inflammation. However, two had been previously proposed in adult inflammatory bowel diseases (IBD), namely, MMP9 and PROK2. Conclusions. Our findings indicate that biomarker identification in pediatric UC is complicated by the involvement of multiple pathways, each of which includes many different types of genes in the blood or inflamed intestine. Therefore, further studies for identification of combinatorial biomarkers are warranted. Our study may provide candidate biomarkers for such studies.
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47.
  • Lilja, Mona, 1971, et al. (author)
  • De/Politicization as resistance: the ‘missing women’ in India
  • 2023
  • In: Journal of Political Power. - 2158-379X .- 2158-3803. ; 16:2, s. 177-192
  • Journal article (peer-reviewed)abstract
    • Resistance is often depicted in terms of antagonism, in which its core is the politicization of different issues or identities. This paper, however, seeks to add to previous research by displaying how depoliticization could also be understood as a form of resistance. De/Politicization has previously been addressed in the Social Sciences as a power tactic. But, by bringing insight from, as well as illuminating, the ‘missing women’ situation in India, we suggest that depoliticization could also be considered a tactical form of dissent.
  •  
48.
  • Lilja, Mona, 1971, et al. (author)
  • New forms of power in a neoliberal era Artepolitics or the ‘governing through non-governing’
  • 2022
  • In: Journal of Political Power. - 2158-379X .- 2158-3803. ; 15:2, s. 189-201
  • Journal article (peer-reviewed)abstract
    • The neoliberal globalization characterizing this century has unleashed new strategies of governing. This paper elaborates on a growing form of governing; that is, governing that extorts sub- jects’ desires for improvement and creativity to control and profit from these subjects. This, what we would like to call, ‘artepolitics’ could be seen as a particular form of governing. ‘Artepolitics’ is a technology of governing that seeks to regulate individual conduct with reference to self-realization and distribution of ‘freedom’ to control the employees’ labour situation. We suggest that the fram- ing of ‘artepolitics’ brings into light some interesting trends of the current situation.
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49.
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50.
  • Lilja, Mona, 1971, et al. (author)
  • (Re)sketching the theorizing around “missing women”: imageries of the future, resistance, and materializing aspects of gender
  • 2021
  • In: International feminist journal of politics. - : Informa UK Limited. - 1461-6742 .- 1468-4470. ; 25:2, s. 266-287
  • Journal article (peer-reviewed)abstract
    • Recent sex ratio data indicate that the number of “missing” women and girls has reached approximately 200 million. This is a significant increase since 1990, when roughly 100 million women and girls had “disappeared.” What are the contemporary discussions concerning the widespread practice of the elimination of fetuses and bodies with female genitals? Moreover, how should we, as scholars of law and global politics, name and theorize these “missing” bodies? Despite decades of rigorous scholarship on the connections between sex, gender, and “missing” bodies, there appears to be no agreed understanding of the current and ongoing elimination of fetuses and bodies with female genitals. In this article, we go beyond some well-argued and thought-provoking elaboration and critique of the concept of gendercide to further inquire: what claims should be secured to establish a solid theoretical base for further research on the elimination of fetuses and bodies with female genitals? By building on – in empirical terms – the case of India, our suggested answer to this question rests on two main arguments. First, to capture the motivations and practices of the elimination of fetuses and bodies with female genitals, the productive and materializing aspects of gender should be further interrogated. Second, we argue that previous research has failed to include a temporal dimension to the debate around the “missing” women. We should embrace the imagined emotional encounters with the future, mainly on the part of parents or other family members who perform the sex-selective practices. By integrating these two arguments, we conclude that rethinking the elimination of fetuses and bodies with female genitals also means rethinking the resistance to its practices.
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