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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.

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.

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.

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.

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.

In 2010-2011, a waterborne outbreak of the parasite, Cryptosporidium hominis, affected approximately 27,000 inhabitants in the city of ostersund, Sweden. Previous research suggested that post-infectious symptoms, such as gastrointestinal symptoms and joint pain, could persist for up to 2 years after the initial infection. In this study, we investigated whether the parasite caused post-infectious sequelae for up to 5 years after the outbreak. Prospective cohort study. A randomly selected cohort of individuals residing in ostersund at the time of the outbreak was sent a postal questionnaire in 2011. Responders were sent a follow-up questionnaire in 2016 and completed items on whether they experienced a list of symptoms. We examined whether outbreak cases were more likely than non-cases to report post-infectious symptoms 5 years later. We analysed data using logistic regression and calculated odds ratios with 95% confidence intervals. The analysis included 626 individuals. Among the 262 individuals infected during the outbreak, 56.5% reported symptoms at follow-up. Compared to non-cases, outbreak cases were more likely to report watery diarrhoea, diarrhoea, swollen joints, abdominal pain, bloating, joint discomfort, acid indigestion, alternating bowel habits, joint pain, ocular pain, nausea, and fatigue at the follow-up, after adjusting for age and sex. Our findings suggested that cryptosporidiosis was mainly associated with gastrointestinal- and joint-related post-infectious symptoms for up to 5 years after the infection.

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.

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.

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 appro

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.

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 (p(trend) < 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., Funding Agencies|Department or Research and Development Region Jamtland Harjedalen; Stiftelsen Samariten; Thuringstiftelsen

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., Originally included in thesis in manuscript form.

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.

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 influenci

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.

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., This study was supported by unrestricted grants from Region Jämtland Härjedalen (reference numbers: JLL-758141 and JLL-865141), Region Kronoberg (2019-04-19:2), the Cancer Research Foundation in Northern Sweden (LP17-2168), and Jämtland’s Cancer and Nursing Foundation (146/2018 and 2131/2017).

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.

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. CONCLUSION