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  • 1. Adler, Sara
    et al.
    Widerström, Micael
    Umeå University, Faculty of Medicine, Department of Clinical Microbiology.
    Lindh, Johan
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Symptoms and risk factors of Cryptosporidium hominis infection in children: data from a large waterborne outbreak in Sweden2017In: Parasitology Research, ISSN 0932-0113, E-ISSN 1432-1955, Vol. 116, no 10, p. 2613-2618Article in journal (Refereed)
    Abstract [en]

    Cryptosporidium is a major cause of diarrheal disease worldwide. In developing countries, this infection is endemic and in children, associated with growth faltering and cognitive function deficits, with the most severe impact on those aged <2 years. Little has been reported about symptoms and risk factors for children in industrialized countries, although the disease incidence is increasing in such regions. In November 2010, a large waterborne outbreak of C. hominis occurred in the city of Östersund in Sweden. Approximately 27,000 of the 60,000 inhabitants were symptomatic. We aimed to describe duration of symptoms and the risk factors for infection with C. hominis in children aged <15 years in a Western setting. Within 2 months after a boil water advisory, a questionnaire was sent to randomly selected inhabitants of all ages, including 753 children aged <15 years. Those with ≥3 loose stools/day were defined as cases of diarrhoea. The response rate was 70.3%, and 211 children (39.9%) fulfilled the case definition. Mean duration of diarrhoea was 7.5 days (median 6, range 1-80 days). Recurrence, defined as a new episode of diarrhoea after ≥2 days of normal stools, occurred in 52.5% of the cases. Significant risk factors for infection, besides living within the distribution area of the contaminated water plant, included a high level of water consumption, male sex, and a previous history of loose stools. The outbreak was characterized by high attack and recurrence rates, emphasizing the necessity of water surveillance to prevent future outbreaks.

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  • 2.
    Benckert, Martin
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Medicine.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Söderberg, Stefan
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Medicine.
    Eliasson, Mats
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Medicine.
    Improved metabolic health among the obesein six population surveys 1986 to 2009: the Northern Sweden MONICA study2015In: BMC Obesity, ISSN 2052-9538, Vol. 2, no 7Article in journal (Refereed)
    Abstract [en]

    Background

    The incidence of CVD is decreasing in spite of increasing BMI in the population. We examined trends in metabolic health among overweight and obese individuals and the influence of lifestyle and socioeconomic status. Six cross sectional population surveys in the Northern Sweden MONICA Study between 1986 and 2009. 8 874 subjects 25 to 64 years participated (74% participation rate). Metabolic health was defined as a total cholesterol level below 5.0 mmol/l, blood pressure below 140/90 mmHg and not having diabetes. In 2009 the age span 25 to 74 years was studied.

    Results

    The prevalence of metabolic health among obese subjects increased by 7.9 % per year (95% confidence interval 5.4; 10.5), reaching 21.0% in 2009. The corresponding figures for overweight subjects were 5.9% per year (4.6; 7.3), reaching 18% in 2009, whereas for the normal-weight subjects, the increase was 6.2% per year (5.3; 7.2), reaching 39% in 2009. The prevalence of metabolic health among subjects with abdominal obesity increased by 5.8% (4.6; 7.0) per year, reaching 17.3% in 2009. Among those with no abdominal obesity the increase was 6.2% (5.2; 7.1), reaching 38% in 2009 (p = <0.001 for all groups). Only among non-obese men and obese women did the increase continue between 2004 and 2009. In the other groups a slight decline or levelling off was noted.

    In 2009 women had a 27% higher prevalence of metabolic health than men. The prevalence of metabolic health among the obese was 19.8% which declined to 15.8% if subjects treated for hypertension or hypercholesterolemia were classified as not healthy. Overweight and obese subjects were less often metabolically healthy (odds ratio 0.54 and 0.59 respectively) compared with normal-weight subjects, independent of sex and age as were subjects with abdominal obesity (odds ratio 0.52). Adjustments for smoking, physical activity and education level did not influence any estimates.

    Conclusions

    This report shows a large increase in prevalence of metabolic health from 1986 to 2009 for all anthropometric categories. Metabolic health remains considerably less prevalent among overweight and obese subjects than among those with normal weight.

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  • 3.
    Bergström, Göran
    et al.
    Department of Molecular and Clinical Medicine, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Clinical Physiology, Sahlgrenska University Hospital, Gothenburg, Sweden.
    Rosengren, Annika
    Department of Molecular and Clinical Medicine, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Department of Medicine Geriatrics and Emergency Medicine, Sahlgrenska University Hospital Östra Hospital, Gothenburg, Sweden.
    Bacsovics Brolin, Elin
    Department of Clinical Science, Intervention and Technology, Karolinska Institute, Stockholm, Sweden; Department of Radiology, Capio S:t Göran Hospital, Stockholm, Sweden.
    Brandberg, John
    Department of Radiology, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Department of Radiology, Sahlgrenska University Hospital, Gothenburg, Sweden.
    Cederlund, Kerstin
    Department of Clinical Science, Intervention and Technology, Karolinska Institute, Stockholm, Sweden.
    Engström, Gunnar
    Department of Clinical Sciences in Malmö, Lund University, Malmö, Sweden.
    Engvall, Jan E.
    CMIV, Centre of Medical Image Science and Visualization, Linköping University, Linköping, Sweden; Department of Clinical Physiology and Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden.
    Eriksson, Maria J.
    Department of Molecular Medicine and Surgery, Karolinska Institute, Stockholm, Sweden; Department of Clinical Physiology, Karolinska University Hospital, Stockholm, Sweden.
    Gonçalves, Isabel
    Department of Cardiology, Skåne University Hospital, Malmö, Sweden; Cardiovascular Research Translational Studies, Department of Clinical Sciences Malmö, Lund University, Malmö, Sweden.
    Hagström, Emil
    Department of Medical Sciences, Cardiology, Uppsala University, Uppsala, Sweden; Uppsala Clinical Research Center, Uppsala University, Uppsala, Sweden.
    James, Stefan K.
    Department of Medical Sciences, Cardiology, Uppsala University, Uppsala, Sweden; Uppsala Clinical Research Center, Uppsala University, Uppsala, Sweden.
    Jernberg, Tomas
    Department of Clinical Sciences, Danderyd University Hospital, Karolinska Institutet, Stockholm, Sweden.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine. Unit of Research, Education, and Development, Östersund Hospital, Umeå University, Umeå, Sweden.
    Magnusson, Martin
    Department of Clinical Sciences in Malmö, Lund University, Malmö, Sweden; Department of Cardiology, Skåne University Hospital, Malmö, Sweden; Wallenberg Center for Molecular Medicine, Lund University, Lund, Sweden; Hypertension in Africa Research Team HART, North-West University, Potchefstroom, South Africa.
    Persson, Anders
    CMIV, Centre of Medical Image Science and Visualization, Linköping University, Linköping, Sweden; Department of Radiology, and Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden; Department of Clinical Sciences, Huddinge University Hospital, Karolinska Institutet, Stockholm, Sweden.
    Persson, Margaretha
    Department of Clinical Sciences in Malmö, Lund University, Malmö, Sweden; Department of Internal Medicine, Skåne University Hospital, Malmö, Sweden.
    Sandström, Anette
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Cardiology.
    Schmidt, Caroline
    Department of Molecular and Clinical Medicine, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Skoglund Larsson, Linn
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Sundström, Johan
    Department of Medical Sciences, Uppsala University, Uppsala, Sweden; The George Institute for Global Health, University of New South Wales, Sydney, Australia.
    Swahn, Eva
    Department of Cardiology and Department of Health, Medicine, and Caring Sciences, Linköping University, Linköping, Sweden.
    Söderberg, Stefan
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Torén, Kjell
    Section of Occupational and Environmental Medicine, School of Public Health and Community Medicine, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Department of Occupational and Environmental Medicine, Sahlgrenska University Hospital, Gothenburg, Sweden.
    Östgren, Carl Johan
    CMIV, Centre of Medical Image Science and Visualization, Linköping University, Linköping, Sweden; Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden.
    Lampa, Erik
    Department of Medical Sciences, Uppsala University, Uppsala, Sweden.
    Lind, Lars
    Department of Medical Sciences, Clinical Epidemiology, Uppsala University, Uppsala, Sweden.
    Body weight at age 20 and in midlife is more important than weight gain for coronary atherosclerosis: Results from SCAPIS2023In: Atherosclerosis, ISSN 0021-9150, E-ISSN 1879-1484, Vol. 373, p. 46-54Article in journal (Refereed)
    Abstract [en]

    Background and aims: 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.

    Methods: 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).

    Results: 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.

    Conclusions: 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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  • 4.
    Boks, Marije
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Section of Medicine.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Section of Medicine.
    Widerström, Micael
    Umeå University, Faculty of Medicine, Department of Clinical Microbiology.
    Karling, Pontus
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Section of Medicine.
    Lindam, Anna
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Eriksson, Axel
    Umeå University, Faculty of Medicine, Department of Clinical Microbiology.
    Sjöström, Malin
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Increased incidence of late-onset inflammatory bowel disease and microscopic colitis after a Cryptosporidium hominis outbreak2022In: Scandinavian Journal of Gastroenterology, ISSN 0036-5521, E-ISSN 1502-7708, Vol. 57, no 12, p. 1443-1449Article in journal (Refereed)
    Abstract [en]

    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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  • 5.
    Boks, Marije
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Widerström, Micael
    Umeå University, Faculty of Medicine, Department of Clinical Microbiology.
    Karling, Pontus
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Lindam, Anna
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Sjöström, Malin
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Persisting symptoms after Cryptosporidium hominis outbreak: a 10-year follow-up from Östersund, Sweden2023In: Parasitology Research, ISSN 0932-0113, E-ISSN 1432-1955, Vol. 122, no 7, p. 1631-1639Article in journal (Refereed)
    Abstract [en]

    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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  • 6.
    De Luca, Vincenzo
    et al.
    Dipartimento di Sanità Pubblica, Università Degli Studi di Napoli Federico II, via S. Pansini 5, Naples, Italy.
    Lazic, Vanja
    Dom Zdravlja Zagreb–Centar, Runjaninova ul. 4, Zagreb, Croatia.
    Birov, Strahil
    Empirica Gesellschaft für Kommunikations-und Technologieforschung mbH, Oxfordstr. 2, Bonn, Germany.
    Piesche, Klaus
    Empirica Gesellschaft für Kommunikations-und Technologieforschung mbH, Oxfordstr. 2, Bonn, Germany.
    Beyhan, Ozan
    Ministry of Health of Turkey, Üniversiteler Mah. 6001. Cad. No. 9, Ankara, Turkey.
    Pengo, Martino Francesco
    Department of Cardiovascular, Neural and Metabolic Sciences, Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS) Istituto Auxologico Italiano, via Ariosto 13, Milan, Italy.
    Melgara, Marcello
    Azienda Regionale per l’Innovazione e Gli Acquisti S.p.A, Direzione Generale Sanità, Regione Lombardia, Piazza Città di Lombardia 1, Milan, Italy.
    Sherman, Marie Holm
    Research and Development Department, Region Jämtland Härjedalen, Kyrkgatan 12, Östersund, Sweden.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Balenovic, Antonija
    Dom Zdravlja Zagreb–Centar, Runjaninova ul. 4, Zagreb, Croatia.
    Parati, Gianfranco
    Department of Cardiovascular, Neural and Metabolic Sciences, Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS) Istituto Auxologico Italiano, via Ariosto 13, Milan, Italy; Department of Medicine and Surgery, Università Degli Studi di Milano-Bicocca, Piazza dell’Ateneo Nuovo 1, Milan, Italy.
    Triassi, Maria
    Dipartimento di Sanità Pubblica, Università Degli Studi di Napoli Federico II, via S. Pansini 5, Naples, Italy; Azienda Ospedaliera Universitaria Federico II, via S. Pansini 5, Naples, Italy.
    Izzo, Raffaele
    Azienda Ospedaliera Universitaria Federico II, via S. Pansini 5, Naples, Italy; Dipartimento di Scienze Biomediche Avanzate, Università degli Studi di Napoli Federico II, via S. Pansini 5, Naples, Italy.
    Iaccarino, Guido
    Azienda Ospedaliera Universitaria Federico II, via S. Pansini 5, Naples, Italy; Dipartimento di Scienze Biomediche Avanzate, Università degli Studi di Napoli Federico II, via S. Pansini 5, Naples, Italy.
    Illario, Maddalena
    Dipartimento di Sanità Pubblica, Università Degli Studi di Napoli Federico II, via S. Pansini 5, Naples, Italy; Azienda Ospedaliera Universitaria Federico II, via S. Pansini 5, Naples, Italy.
    Digitally enabled health service for the integrated management of hypertension: A participatory user-centred design process2021In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 18, no 23, article id 12442Article in journal (Refereed)
    Abstract [en]

    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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  • 7. Despotou, George
    et al.
    Laleci Erturkmen, Gokce B.
    Yuksel, Mustafa
    Sarigul, Bunyamin
    Lindman, Pontus
    Jaulent, Marie-Christine
    Bouaud, Jacques
    Traore, Lamine
    Lim Choi Keung, Sarah N.
    De Manuel, Esteban
    Verdoy, Dolores
    De Blas, Antonio
    Gonzalez, Nicolas
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine. Unit of Research, Education, and Development, Östersund Hospital.
    Sherman, Marie
    Von Tottleben, Malte
    Beach, Marie
    Marguerie, Christopher
    Karni, Liran
    Klein, Gunnar O.
    Kalra, Dipak
    Chen, Rong
    Arvanitis, Theodoros N.
    Localisation, Personalisation and Delivery of Best Practice Guidelines on an Integrated Care and Cure Cloud Architecture: The C3-Cloud Approach to Managing Multimorbidity2020In: Digital Personalized Health and Medicine / [ed] Louise B. Pape-Haugaard; Christian Lovis; Inge Cort Madsen; Patrick Weber; Per Hostrup Nielsen; Philip Scott, IOS Press, 2020, Vol. 270, p. 623-627Conference paper (Refereed)
    Abstract [en]

    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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  • 8.
    Fjällström, Petter
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Adopting standardized cancer patient pathways as a policy at different organizational levels in the Swedish health system2023In: Health Research Policy and Systems, ISSN 1478-4505, E-ISSN 1478-4505, Vol. 21, no 1, article id 122Article in journal (Refereed)
    Abstract [en]

    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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  • 9.
    Fjällström, Petter
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Merging existing practices with new ones: the adjustment of organizational routines to using cancer patient pathways in primary healthcare2022In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 22, no 1, article id 3Article in journal (Refereed)
    Abstract [en]

    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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  • 10.
    Fjällström, Petter
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    CN59 A meeting between existing practices and new ones in primary healthcare: How nurses adjust work routines to using cancer patient pathways2021In: Annals of Oncology, ISSN 0923-7534, E-ISSN 1569-8041, Vol. 32, no Supplement 5, p. S1277-S1277, article id CN59Article in journal (Refereed)
    Abstract [en]

    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.

  • 11.
    Fjällström, Petter
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Reworking routines in primary healthcare: Adapting standarized cancer patient pathways while continuing practice2021In: Ca-PRI Online Conference 2021: Abstracts, 2021, p. 55-55, article id L27Conference paper (Refereed)
    Abstract [en]

    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.

  • 12.
    Fjällström, Petter
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Carl
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Hultstrand, Cecilia
    Umeå University, Faculty of Medicine, Department of Nursing.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Reduction in the diagnostic interval after the introduction of cancer patient pathways for colorectal cancer in northern Sweden2023In: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, Vol. 41, no 3, p. 287-296Article in journal (Refereed)
    Abstract [en]

    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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  • 13.
    Fureman, Anna-Lena
    et al.
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics. Östersund Hospital.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine. Östersund Hospital.
    Lind, Torbjörn
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Särnblad, Stefan
    Department of Pediatrics, Örebro University, Hospital and School of Medical Sciences, Örebro University, Örebro, Sweden.
    Bladh, Marie
    Department of Obstetrics and Gynecology and Biomedical and Clinical Sciences, Linköping University Hospital, Linköping University, Linköping, Sweden.
    Samuelsson, Ulf
    Division of Pediatrics, Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden.
    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)2021In: Pediatric Diabetes, ISSN 1399-543X, E-ISSN 1399-5448, Vol. 22, no 5, p. 766-775Article in journal (Refereed)
    Abstract [en]

    Objective: This study aimed to compare metabolic control measured as hemoglobin A1c (HbA1c), the risk of severe hypoglycemia, and body composition measured as body mass index standard deviation scores (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.

    Research Design and Methods: Longitudinal data from 2011 to 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: Data were available from 35,624 patient-years (54% boys). In general, HbA1c decreased approximately 0.5% (2–5 mmol/mol) from 2011 to 2016 (ptrend < 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.

    Conclusions: 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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  • 14. García-Lorenzo, Borja
    et al.
    Gorostiza, Ania
    González, Nerea
    Larrañaga, Igor
    Mateo-Abad, Maider
    Ortega-Gil, Ana
    Bloemeke, Janika
    Groene, Oliver
    Vergara, Itziar
    Mar, Javier
    Lim Choi Keung, Sarah N.
    Arvanitis, Theodoros N.
    Kaye, Rachelle
    Dahary Halevy, Elinor
    Nahir, Baraka
    Arndt, Fritz
    Dichmann Sorknæs, Anne
    Juul, Natassia Kamilla
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Holm Sherman, Marie
    Laleci Erturkmen, Gokce Banu
    Yuksel, Mustafa
    Robbins, Tim
    Kyrou, Ioannis
    Randeva, Harpal
    Maguire, Roma
    McCann, Lisa
    Miller, Morven
    Moore, Margaret
    Connaghan, John
    Fullaondo, Ane
    Verdoy, Dolores
    de Manuel Keenoy, Esteban
    Assessment of the effectiveness, socio-economic impact and implementation of a digital solution for patients with advanced chronic diseases: the ADLIFE study protocol2023In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 20, no 4, article id 3152Article in journal (Refereed)
    Abstract [en]

    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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  • 15.
    Hultstrand Ahlin, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    GPs' perspectives of the patient encounter: in the context of standardized cancer patient pathways2020In: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, Vol. 38, no 2, p. 238-247Article in journal (Refereed)
    Abstract [en]

    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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  • 16.
    Hultstrand Ahlin, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine. Unit of Research, Education, and Development, Östersund Hospital.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Negotiating bodily sensations between patients and GPs in the context of standardized cancer patient pathways: an observational study in primary care2020In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 20, no 1, article id 46Article in journal (Refereed)
    Abstract [en]

    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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  • 17.
    Hultstrand Ahlin, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Hörnsten, Carl
    Psychiatry, University Hospital of Umeå, Umeå, Sweden.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine. Östersund Hospital.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Fjällström, Petter
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    The association between sociodemographic factors and time to diagnosis for colorectal cancer in northern Sweden2022In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 31, no 6, article id e13687Article in journal (Refereed)
    Abstract [en]

    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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  • 18.
    Hultstrand Ahlin, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hörnsten, Åsa
    Umeå University, Faculty of Medicine, Department of Nursing.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Wishing to be perceived as a capable and resourceful person: A qualitative study of melanoma patients’ experiences of the contact and interaction with healthcare professionals2019In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 28, no 7–8, p. 1223-1232Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: To explore patients' experiences of contact and interaction with healthcare professionals (HCPs) during the diagnostic process of melanoma.

    BACKGROUND: In Sweden, most patients with suspected skin lesions seek care at the primary level of services in the first instance. Previous research describes the diagnostic process as a complex journey with uncertainty. Nonetheless, the importance of contact and interaction between patient and HCPs during the diagnostic process is rarely explored.

    DESIGN: This study adopted a qualitative design in which semi-structured interviews were conducted and the COREQ-checklist for qualitative studies employed (EQUATOR guidelines).

    METHODS: A sample of 30 patients (15 women, 15 men) diagnosed with melanoma was included. Secondary analysis of interviews was carried out using qualitative content analysis.

    RESULTS: One theme emerged: Wishing to be perceived as a capable and resourceful person that consisted of three categories: (a) The need of being valued, (b) The need of being informed and (c) The need of taking actions.

    CONCLUSIONS: Our results suggest that patients wish to be valued as capable and resourceful persons as well as to be provided with honest and sufficient information about the diagnosis and subsequent procedures. By fulfilling these wishes, HCPs can involve patients in the diagnostic process and reduce patients' uncertainty. A need of supportive and accessible health care to manage the diagnostic process and to reduce patients' struggle for care was also identified.

    RELEVANCE TO THE CLINICAL PRACTICE: Patients are satisfied when health care is organised in a patient-/person-centred manner, that is, in accordance with patients' needs, avoiding gatekeeping, and when HCPs interact respectfully in encounters. Accessible HCPs during the diagnostic process of melanoma are required to inform, support and navigate patients within the healthcare system and through their diagnostic journey.

  • 19.
    Hultstrand, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Shifting between roles of a customer and a seller – patients’ experiences of the encounter with primary care physicians when suspicions of cancer exist2021In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 16, no 1, article id 2001894Article in journal (Refereed)
    Abstract [en]

    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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  • 20.
    Hultstrand, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Hörnsten, Carl
    Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Coe, Anna-Britt
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Fjällström, Petter
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hajdarevic, Senada
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Socioeconomic factors do not influence time to diagnosis for colorectal cancer in northern SwedenManuscript (preprint) (Other academic)
  • 21.
    Högberg, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Cronberg, Olof
    Department of Clinical Sciences, Lund University, Lund, Malmö, Sweden; Department of R & D, Region Kronoberg, Växjö, Sweden.
    Thulesius, Hans
    Department of Clinical Sciences, Lund University, Lund, Malmö, Sweden; Department of R & D, Region Kronoberg, Växjö, Sweden; Department of Medicine and Optometry, Linnaeus University, Kalmar, Sweden.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Jansson, Stefan
    School of Medical Sciences, University Health Care Research Centre, Örebro University, Örebro, Sweden; Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
    Gunnarsson, Ulf
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Surgery.
    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 care2022In: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, Vol. 40, no 4, p. 459-465Article in journal (Refereed)
    Abstract [en]

    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.Key Points Evidence is increasing for the use of faecal immunochemical tests (FITs) as diagnostic tools when colorectal cancer can be suspected. We investigated the use of FITs in Sweden. FITs were used extensively in primary care especially in older age groups. There were small differences in the use of FITs between five studied health care regions. There was no tendency towards a higher use of FITs at primary care centres with longer driving times to diagnostic facilities in secondary care.

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  • 22.
    Högberg, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Cardiology.
    Gunnarsson, Ulf
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Surgery.
    Cronberg, Olof
    Department of Clinical Sciences, Lund University, Malmö, Sweden. Department of R & D, Region Kronoberg, Växjö, Sweden..
    Thulesius, Hans
    Department of Clinical Sciences, Lund University, Malmö, Sweden. Department of R & D, Region Kronoberg, Växjö, Sweden. Department of Medicine and Optometry, Linnaeus University, Kalmar, Sweden..
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Jansson, Stefan
    School of Medical Sciences, University Health Care Research Centre, Örebro University, Örebro, Sweden..
    Qualitative faecal immunochemical tests (FITs) for diagnosing colorectal cancer in patients with histories of rectal bleeding in primary care: a cohort study2020In: International Journal of Colorectal Disease, ISSN 0179-1958, E-ISSN 1432-1262, Vol. 35, no 11, p. 2035-2040Article in journal (Refereed)
    Abstract [en]

    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 Örebro 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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  • 23.
    Högberg, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Gunnarsson, Ulf
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Surgery.
    Jansson, Stefan
    University Health Care Research Centre, Örebro University, Örebro..
    Thulesius, Hans
    Department of Clinical Sciences, Lund University, Malmö; professor of primary care, Department of Medicine and Optometry, Linnaeus University, Kalmar.
    Cronberg, Olof
    Department of Clinical Sciences, Lund University, Malmö..
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Diagnosing colorectal cancer in primary care: cohort study in Sweden of qualitative faecal immunochemical tests, haemoglobin levels, and platelet counts2020In: British Journal of General Practice, ISSN 0960-1643, E-ISSN 1478-5242, Vol. 70, no 701, p. e843-e851Article in journal (Refereed)
    Abstract [en]

    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, alone 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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  • 24.
    Högberg, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Section of Medicine.
    Karling, Pontus
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Section of Medicine.
    Rutegård, Jörgen
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Diagnosing colorectal cancer and inflammatory bowel disease in primary care: The usefulness of tests for faecal haemoglobin, faecal calprotectin, anaemia and iron deficiency: A prospective study2017In: Scandinavian Journal of Gastroenterology, ISSN 0036-5521, E-ISSN 1502-7708, Vol. 52, no 1, p. 69-75Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Abdominal complaints are common reasons to consult primary care but they are seldom caused by colorectal cancer (CRC), high-risk adenomas (HRAs), or inflammatory bowel disease (IBD). Reliable diagnostic aids would be helpful in deciding which patients to refer for bowel imaging. Our aim was to assess the value of a faecal immunochemical test (FIT) and a faecal calprotectin (FC) test in detecting CRC, HRAs and IBD in primary care, and the value of combining these tests with anaemia and iron-deficiency tests.

    MATERIALS AND METHODS: This prospective study included 373 consecutive patients that received a FIT or a FC test ordered by a primary care physician. We collected samples for FITs, FC tests, full blood counts and iron-deficiency tests. Physicians were instructed to refer patients with a positive FIT or FC test (cut-off ≥100μg/g) for bowel imaging. The patients' presenting symptoms were recorded. Patients were followed for 2 years.

    RESULTS: The best test for detecting CRC and IBD was the combination of the FIT and haemoglobin concentration. This test had a sensitivity, specificity, positive predictive value and negative predictive value of 100%, 61.7%, 11.7% and 100%, respectively. The FIT detected a significantly larger proportion of CRC, HRAs and IBD than the FC test (0.92 versus 0.46, 95% confidence interval 0.22-0.67).

    CONCLUSION: A negative FIT combined with a normal haemoglobin concentration could rule out CRC and IBD with a high degree of safety. This could be useful in prioritising referrals for bowel imaging from primary care.

  • 25.
    Högberg, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Karling, Pontus
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Medicine.
    Rutegård, Jörgen
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Surgery.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Diagnosis of colorectal cancer: Patients' symptoms and faecal immunochemical test results in primary care. A prospective studyManuscript (preprint) (Other academic)
  • 26.
    Högberg, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Cardiology.
    Karling, Pontus
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Section of Medicine.
    Rutegård, Jörgen
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Surgery.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    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 study2020In: BMC Family Practice, E-ISSN 1471-2296, Vol. 21, no 1, article id 129Article in journal (Refereed)
    Abstract [en]

    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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  • 27.
    Högberg, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Karling, Pontus
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Medicine.
    Rutegård, Jörgen
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Surgery.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Ljung, Thomas
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Immunochemical faecal occult blood tests in primary care and the risk of delay in the diagnosis of colorectal cancer2013In: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, Vol. 31, no 4, p. 209-214Article in journal (Refereed)
    Abstract [en]

    Objective. To evaluate the value, risks, and shortcomings of immunochemical faecal occult blood tests (iFOBTs) in the diagnosis of colorectal cancer (CRC) and adenomas with high-grade dysplasia (HGD) in patients initially presenting to primary care. Design. A retrospective population-based study. Setting and subjects. All 495 cases of CRC and adenomas with HGD diagnosed in the county of Jamtland, Sweden from 2005 to 2009. Results. Of 495 patients 323 (65%) initially presented to primary care. IFOBTs were performed in 215 of 323 (67%) patients. The sensitivity of iFOBT for CRC and adenomas with HGD was 88% (83% when patients with a history of rectal bleeding were excluded). Of 34 patients with anaemia found en passant, 10 had negative iFOBTs. Time to diagnosis was longer for patients with negative iFOBTs (p < 0.0005). Conclusion. IFOBT might be helpful in selecting which patients to refer for colonoscopy. However, iFOBT has a limited sensitivity as a diagnostic test for CRC and adenomas with HGD. Relying only on iFOBT for colonoscopy referral could delay diagnosis, especially for patients with anaemia found en passant.

  • 28.
    Högberg, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine. Department of Public Health and Clinical Medicine, Unit of Research, Education and Development - Östersund, Umeå University, Umeå, Sweden .
    Samuelsson, Eva
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine. Department of Public Health and Clinical Medicine, Unit of Research, Education and Development - Östersund, Umeå University, Umeå, Sweden .
    Fhärm, Eva
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Could it be colorectal cancer?: general practitioners' use of the faecal occult blood test and decision making - a qualitative study2015In: BMC Family Practice, E-ISSN 1471-2296, Vol. 16, no 1, p. 153-161Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Abdominal complaints are common reasons for contacting primary care physicians, and it can be challenging for general practitioners (GPs) to identify patients with suspected colorectal cancer (CRC) for referral to secondary care. The immunochemical faecal occult blood test (iFOBT) is used as a diagnostic aid in primary care, but it is unclear how test results are interpreted. Studies show that negative tests are associated with a risk of delayed diagnosis of CRC and that some patients with positive tests are not investigated further. The aim of this study was to explore what makes GPs suspect CRC and to investigate their practices regarding investigation and referral, with special attention on the use of iFOBTs.

    METHOD: Semi-structured individual interviews were conducted with eleven purposely selected GPs and registrars in Region Jämtland Härjedalen, Sweden, and subjected to qualitative content analysis.

    RESULTS: In the analysis of the interviews four categories were identified that described what made the physicians suspect CRC and their practices. Careful listening-with awareness of the pitfalls: Attentive listening was described as essential, but there was a risk of being misled by, for example, the patient's own explanations. Tests can help-the iFOBT can also complicate the diagnosis: All physicians used iFOBTs to various extents. In the absence of guidelines, all found their own ways to interpret and act on the test results. To refer or not to refer-safety margins are necessary: Uncertainty was described as a part of everyday work and was handled in different ways. Common vague symptoms could be CRC and thus justified referral with safety margins. Growing more confident-but also more humble: With increasing experience, the GPs described becoming more confident in their decisions but they were also more cautious.

    CONCLUSIONS: Listening carefully to the patient's history was essential. The iFOBT was frequently used as support, but there were considerable variations in the interpretation and handling of the results. The diagnostic process can be described as navigating uncertain waters with safety margins, while striving to keep the patient's best interests in mind. The iFOBT may be useful as a diagnostic aid in primary care, but more research and evidence-based guidelines are needed.

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  • 29.
    Högberg, Cecilia
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Section of Medicine.
    Söderström, Lars
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Faecal immunochemical tests for the diagnosis of symptomatic colorectal cancer in primary care: the benefit of more than one sample2017In: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, Vol. 35, no 4, p. 369-372Article in journal (Refereed)
    Abstract [en]

    Objective: Faecal immunochemical tests (FITs) are used to screen for colorectal cancer (CRC) and as diagnostic aids in symptomatic patients. However, the number of samples per FIT varies. It is unclear if there is any advantage to analyse multiple-sample FITs in symptomatic patients.

    Design and setting: This is a post hoc analysis of a retrospective study that included all cases of CRC and adenomas with high-grade dysplasia (HGD) between 2005 and 2009 in the county of Jamtland, Sweden.

    Subjects: All patients with CRC and adenomas with HGD that initially presented with symptoms to primary care and delivered FITs.

    Main outcome measure: The likelihood of a positive FIT in cases of CRC and adenomas with HGD; when analysing one, two or three samples.

    Results: Of 195 patients, 160 delivered three-sample FITs. Using the 139 cases in which at least one sample was positive, the likelihood of detecting a positive sample upon analysis of only one of the three samples was 0.91 (95% CI: 0.85-0.95), indicating that 13 positive cases may have been missed.

    Conclusion: Use of a one-sample FIT instead of a three-sample FIT as a diagnostic aid may result in the missing of one tenth of symptomatic CRCs and adenomas with HGD.

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  • 30. Julin, Bettina
    et al.
    Willers, Carl
    Leksell, Janeth
    Lindgren, Peter
    Looström Muth, Karin
    Svensson, Ann-Marie
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine. Unit of Research, Education, and Development, Östersund.
    Dahlström, Tobias
    Association between sociodemographic determinants and health outcomes in individuals with type 2 diabetes in Sweden2018In: Diabetes/Metabolism Research Reviews, ISSN 1520-7552, E-ISSN 1520-7560, Vol. 34, no 4, article id e2984Article in journal (Refereed)
    Abstract [en]

    Background: Concurrent multifactorial treatment is needed to reduce consequent risks of diabetes, yet most studies investigating the relationship between sociodemographic factors and health outcomes have focused on only one risk factor at a time. Swedish health care is mainly tax-funded, thus providing an environment that should facilitate equal health outcomes in patients, independent of background, socioeconomic status, or health profile. This study aimed at investigating the association between several sociodemographic factors and diabetes-related health outcomes represented by HbA(1c), systolic blood pressure, low-density lipoprotein cholesterol, predicted 5-year risk of cardiovascular disease, and statin use.

    Methods: This large retrospective registry study was based on patient-level data from individuals diagnosed with type 2 diabetes during 2010 to 2011 (n=416,228) in any of 7 Swedish regions (similar to 65% of the Swedish population). Health equity in diabetes care analysed through multivariate regression analyses on intermediary outcomes (HbA(1c), systolic blood pressure, and low-density lipoprotein), predicted 5-year risk of cardiovascular disease and process (i.e., statin use) after 1-year follow-up, adjusting for several sociodemographic factors.

    Results: We observed differences in intermediary risk measures, predicted 5-year risk of cardiovascular disease, and process dependent on place of birth, sex, age, education, and social setting, despite Sweden's articulated vision of equal health care.

    Conclusions: Diabetes patients' health was associated with sociodemographic prerequisites. Furthermore, in addition to demographics (age and sex) and disease history, educational level, marital status, and region of birth are important factors to consider when benchmarking health outcomes, e.g., average HbA(1c) level, and evaluating the level of health equity between organizational units or between different administrative regions.

  • 31.
    Jutterström, Lena
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Stenlund, Anna-Lena
    Umeå University, Faculty of Medicine, Department of Nursing.
    Otten, Julia
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine. Unit of Research, Education and Development Department of Public Health and Clinical Medicine, Östersund Hospital, Östersund, Sweden.
    Hellström Ängerud, Karin
    Umeå University, Faculty of Medicine, Department of Nursing.
    Awareness of cardiovascular risk among persons with type 2 diabetes: a qualitative study2024In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 19, no 1, article id 2294512Article in journal (Refereed)
    Abstract [en]

    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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  • 32.
    Köpsén, Sofia
    et al.
    Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation.
    Lilja, Mikael
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Hellgren, Margareta
    The Skaraborg Institute, Sweden; Department of Public Health and Community Medicine/Primary Health Care, The Sahlgrenska Academy, The University of Gothenburg, Gothenburg, Sweden.
    Sandlund, Jonas
    Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Section of Physiotherapy.
    Sjöström, Rita
    Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation.
    Midwives' and diabetes nurses' experience of screening and care of women with gestational diabetes mellitus: a qualitative interview study2023In: Nursing Research and Practice, ISSN 2090-1429, E-ISSN 2090-1437, Vol. 2023, article id 6386581Article in journal (Refereed)
    Abstract [en]

    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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  • 33. Laleci Erturkmen, Gokce B.
    et al.
    Yuksel, Mustafa
    Sarigul, Bunyamin
    Arvanitis, Theodoros N.
    Lindman, Pontus
    Chen, Rong
    Zhao, Lei
    Sadou, Eric
    Bouaud, Jacques
    Traore, Lamine
    Teoman, Alper
    Lim Choi Keung, Sarah N.
    Despotou, George
    de Manuel, Esteban
    Verdoy, Dolores