Mikael Lilja

Background: Early cancer diagnosis is a healthcare priority, but identifying patients who may have cancer remains challenging because alarm symptoms are often non-specific and may also indicate other conditions. To facilitate timely cancer diagnosis, standardized cancer patient pathways (CPP) have been introduced in several health systems, including Sweden. Since most patients diagnosed with cancer begin their pathway in primary healthcare (PHC), nurses and physicians play a central role in assessing symptoms and determining whether CPP criteria for suspected cancer are fulfilled. Although research concerning the introduction of CPPs is expanding, knowledge is lacking on how CPPs influence Swedish PHC nurses’ and physicians’ ways of handling patients with potential cancer symptoms. Therefore, this study aimed to explore PHC providers’ strategies of using CPPs when handling patients presenting symptoms that may indicate cancer. Method: A constructivist Grounded Theory Method was utilized to collect and analyze qualitative data through group interviews in PHC units in northern Sweden. Six units were included, and nine group interviews were conducted from March to November 2019, involving 21 nurses and 20 physicians. Interviews were audio recorded, transcribed verbatim, and analyzed. Results: The results showed a process of handling challenges and opportunities when suspecting cancer in PHC and using CPPs through three categories focusing on strategies. First, physicians and nurses prioritized patients’ needs of urgent care through conviction by using their professional competence to assess symptoms, rather than strictly relying on the symptom descriptions outlined in CPPs, with nurses primarily identifying these symptoms. Second, while physicians used creative strategies to make CPP referrals work for patients whose symptoms did not align with the templates, nurses similarly used creative strategies to raise suspicions and facilitate further assessment despite the absence of clear alarm symptoms. Third, physicians and nurses sensitively informed patients about CPPs, balancing between explaining the next investigation steps and safeguarding potential illness-related anxiety by avoiding the discussion as much as possible. Conclusion: Findings highlight the important role of PHC providers in using CPPs for patients with potential cancer by identifying symptoms, investigating suspicions, and sensitively informing patients. CPPs were perceived as facilitating faster cancer diagnostic pathways when they aligned with PHC providers’ clinical assessments, but challenges arose when clinical assessments misalign with predetermined standardized packages. These findings indicate the importance of involving PHC providers in refining CPP usage. Furthermore, communicating clearly about potential cancer diagnoses is necessary, but not as simple as it may seem.

Aim: To explore how cardiovascular risk communication is constructed, negotiated and enacted in practice to persons with type 2 diabetes. Design: Qualitative. Methods: Individual interviews were conducted with 14 HCPs in primary care. Data were analysed using the constructivist grounded theory method. Results: The core category, ‘Striving to enhance cardiovascular risk awareness in persons with type 2 diabetes while balancing responsibility and uncertainty’, captures the challenges in making CVD risk understandable and meaningful for patients. Four categories describe the HCPs' work: Navigating a complex assessment of cardiovascular risk, struggling to communicate cardiovascular risk in a pedagogical way, trying to build a trusting relationship and simultaneously highlighting the disease severity, and experiencing loneliness and requesting organisational changes. Conclusions: Healthcare professionals (HCPs) recognised their significant responsibility for cardiovascular risk communication, but simultaneously experienced uncertainty about how to assess patients' individual CVD risk. Diabetes specialist nurses described feelings of professional isolation, limited medical support from physicians and a lack of shared responsibility within the diabetes care team. HCPs also requested sufficient organisational resources. Implications for the Profession: Communicating cardiovascular risk remains difficult. Strengthening the role of HCPs in risk communication and ensuring they adopt a more person‐centred approach are essential to improving risk communication in primary healthcare. Impact: To assess cardiovascular risk and reveal patients' understanding, HCPs must go beyond education, build trust and understanding, and balance encouragement with demands. Reporting Method: COREQ checklist. Patient or Public Contribution: No patient or public contribution.

Background: Many persons with type 2 diabetes (T2D) lack risk awareness or underestimate their cardiovascular risk. Although health care professionals in primary health care strive to implement risk-awareness strategies for cardiovascular risk, persons with T2D report a lack of meaningful dialogue with health care professionals. Co-creation is grounded in participatory action research and involves participants as equal partners across all stages of a project. This study describes the development of an intervention to increase cardiovascular risk awareness in people with T2D. Objective: This study aims to describe the co-creation process of developing an intervention to increase awareness of cardiovascular risk in persons with T2D. Methods: A co-creative design was used to develop an intervention following a participatory action research framework. Four workshops with persons with T2D, diabetes specialist nurses, and physicians in primary health care explored communication about cardiovascular risk, co-identified needs, co-designed solutions, tested prototypes, and redefined and retested the content of the intervention. The data were analyzed using reflexive thematic analysis. Results: The analysis identified 4 themes: co-define: taking the person’s voice into account; co-design: problem-solving and generating ideas; prototype and test: drafting intervention proposals; and redefine and retest: reviewing suggested interventions. The workshop discussions highlighted the need for new interventions, including a risk assessment tool, a patient handbook, material to prompt reflection, and a web education for specialist diabetes nurses. Conclusions: This study demonstrates the value of co-creation, which was used to develop an intervention to enhance cardiovascular risk awareness in persons with T2D. Diabetes specialist nurses need to explore patients’ perceptions of risk and provide space for emotional responses. The web education is intended to strengthen the person-centered approach of diabetes specialist nurses, the patient handbook encourages reflection and dialogue on personal risk, and the risk assessment tool visualizes individual risk. These components may contribute to increased awareness of cardiovascular risk.

BACKGROUND Many persons with type 2 diabetes lack risk awareness or underestimate their cardiovascular risk. Although healthcare professionals in primary healthcare strive to implement risk-awareness strategies for cardiovascular risk, persons with type 2 diabetes report a lack of meaningful dialogue with the healthcare professionals. Co-creation is grounded in Participatory Action Research (PAR) and involves participants as equal partners across all stages of a project. This study describes the development of an intervention to increase cardiovascular risk awareness in people with type 2 diabetes. OBJECTIVE To describe the co-creation process of developing an intervention to increase awareness of cardiovascular risk in persons with type 2 diabetes (T2D). METHODS Design:A co-creative design was used to develop an intervention following a Participatory Action Research (PAR) framework. Methods: Four workshops with persons with T2D, diabetes specialist nurses, and physicians in primary healthcare explored communication about cardiovascular risk, co-identified needs, co-designed solutions, tested prototypes, and redefined and retested the content of the intervention. Data were analysed using reflexive thematic analysis. RESULTS The analysis identified four themes: Co-define: Taking the person’s voice into account; Co-design: problem-solving and generating ideas; Prototype and test: drafting intervention proposals; and Re-define and re-test: reviewing suggested interventions. The workshop discussions highlighted the need for new interventions, including a risk-assessment tool, a patient handbook, material to prompt reflection, and a webb education for specialist diabetes nurses. CONCLUSIONS This study demonstrates the value of co-creation, which was used to develop an intervention to enhance cardiovascular risk awareness in persons with T2D. Diabetes specialist nurses need to explore patients’ perceptions of risk and provide space for emotional responses. The Webb education is intended to strengthen the person-centred approach of diabetes specialist nurses, the patient handbook encourages reflection and dialogue on personal risk, and the risk-assessment tool visualises individual risk. These components may contribute to increased awareness of cardiovascular risk.

In 2010, a Cryptosporidium hominis outbreak resulted in 27,000 clinical cryptosporidiosis cases (45% of the population) in Östersund, Sweden. Long-term abdominal and joint symptoms are common following cryptosporidiosis in adults, and it can affect the development of children in low-income countries. We investigated the potential consequences for children in a high-income setting. In 2011, we prospectively surveyed 600 randomly selected children aged 0–5 years from Östersund. Cases were defined as respondents reporting new episodes of diarrhoea during the outbreak. After 10 years, respondents received a follow-up questionnaire about long-term symptoms (n = 423). We used X ² and Mann–Whitney U tests to assess between-group differences in demographics and the mean number of symptoms. Logistic regressions adjusted for sex, age, and prior issues with loose stools were used to examine associations between case status and symptoms reported at follow-up. We retrieved data on healthcare visits from patient records. In total, 121 cases and 174 non-cases responded to the follow-up questionnaire (69.7%). Cases reported 1.74 (median 1.00, range 0–14) symptoms and non-cases 1.37 (median 0.00, range 0–11) symptoms (p = 0.029). Cases were more likely to report joint symptoms (aOR 4.0, CI 1.3–12.0) and fatigue (aOR 1.9, CI 1.1–3.4), but numbers were generally low. We found no between-group differences in abdominal symptoms, healthcare utilization, or disease diagnoses. Children aged 0–5 years from high-income countries may experience long-term symptoms after cryptosporidiosis, but may not be affected to the same extent as adults or their peers living in low-income countries.

Aims/Hypotheses: To investigate the frequency and characteristics of partial remission in Swedish children with type 1 diabetes and whether the insulin delivery method, that is, continuous subcutaneous insulin infusion (CSII) or multiple daily injections (MDIs), affects incidence and duration of this period, 2007–2011. Factors that increase the proportion of subjects who enter partial remission and extend this period can improve long-term metabolic control and reduce the risk of severe hypoglycemia, improve quality of life, and, in the long run, reduce late complications. Methods: Longitudinal data from 2007 to 2020 were extracted from the Swedish National Quality Register (SWEDIABKIDS) with all reported newly diagnosed children. Data on C-peptide from the participants in the Better Diabetes Diagnosis study from 2007 to 2010 were used. The definition of partial remission was insulin dose–adjusted HbA1c: HbA1c (%) + [4 × total daily insulin dose (U/kg/day)] ≤9. Results: Of the 3887 patients, 56% were boys. More boys than girls were in partial remission throughout the follow-up period until 24 months after diabetes onset. Fewer children 0–6 years old had partial remission at 3 and 12 months but not at 24 months compared with older age-groups. A larger proportion of patients using CSII at 12 and 24 months remained in partial remission compared with those with MDI (37% vs. 33%, P = 0.02 and 31% vs. 27%, P = 0.01, respectively). The level of C-peptide was higher in the group with partial remission and mean HbA1c was lower (both P < 0.001). Partial remission at 12 months after diabetes onset was associated with CSII (odds ratio [OR]: 1.39, confidence interval [CI]:1.13, 1.71), shorter diabetes duration (OR: 0.80, CI: 0.76, 0.84), and male sex (OR: 1.23, CI: 1.04, 1.46). Conclusions/Interpretation: Insulin through MDI, longer duration of diabetes, and female sex were associated with lower frequency of partial remission. Use of CSII seems to contribute to longer partial remission among Swedish children with type 1 diabetes.

To describe the process of becoming aware of and acting on personal cardiovascular (CVD) risk in type 2 diabetes (T2D). 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. 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. 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.

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.

ObjectiveTo compare the diagnostic interval for patients with colorectal cancer before and after the introduction of cancer patient pathways in northern Sweden.DesignA 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.SettingThree counties in northern Sweden with large sparsely populated areas and some cities (637143 residents & SIM;5.1 residents/km(2)).SubjectsPatients were included from the Swedish Cancer Register. Electronic health records reviews were performed and linked to socioeconomic data from Statistics Sweden.Main outcome measuresDifferences in the diagnostic intervals, the patient intervals and the characteristics associated with the longest diagnostic intervals and investigations starting at the emergency department.ResultsThe 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.ConclusionOur 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.ImplicationIn 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.

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 X² 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.