Cecilia Hultstrand

Background: Rural populations often have poorer health outcomes than urban residents due to limited healthcare access, long travel distances, and diagnostic delays. Northern Sweden, covering 55% of the country but only 10% of its population, exemplifies these challenges. Yet research on cancer care and outcomes in the region remains scarce. To better understand structural factors underlying these inequities, we developed the Northern Region Cancer (NoRCa) database. The aim of this article is to describe the database, outline its coverage and linkage structure, and discuss how leveraging this resource has the potential to promote rural cancer research. Methods: NoRCa includes all individuals diagnosed with cancer in the Northern Healthcare Region between 2007 and 2022. Using the Swedish personal identification number, each case was linked to national registers containing data on cancer type and stage, inpatient and specialist outpatient care, prescribed medications, cause of death, demographics, and socioeconomic factors. Geographic information includes residential location and distance to the nearest primary care centre and hospital at diagnosis. Results: The database contains 88,796 incident cancer cases. By integrating clinical, socioeconomic, and geographic data, NoRCa offers a foundation for advancing rural cancer research and informing efforts toward more equitable cancer care. Conclusions: The NoRCa database is a unique register-based data source which has the potential to be used in numerous epidemiological studies, offering several possible research directions. Moreover, the insights generated through our research agenda can inform improvements in the healthcare system, supporting earlier detection efforts and promoting better health outcomes for the population.

Background: Research indicates that about 40% of all cancer cases within the European Union (EU) are preventable. Public awareness of modifiable risk factors is essential for informed health-related decision-making. Systematic assessments of public awareness are crucial for identifying awareness gaps and guiding targeted public health interventions. This study aimed to examine awareness of cancer risk factors among the Swedish general public, and to examine the attitude towards lifestyle changes for cancer prevention. Methods: This cross-sectional study used a pre-existing data set with a randomly selected sample of 1520 participants (18–84 years old) recruited from a Swedish online survey panel in April 2024. Statistical analyses utilized post-stratification weights to make the results representative for the general Swedish population. Pearson’s χ ² -test and weighted adjusted logistic regression were used to test for associations between demographic characteristics, believing that changed lifestyle habits could reduce one’s cancer risk, and awareness of 20 established risk factors for cancer. Results: A majority (63.6%) of the respondents believed that one’s cancer risk could be reduced through changed lifestyle habits. Most were aware of smoking (97.1%), sun exposure (92.4%), hereditary factors (91.0%), sunbeds (90.2%), and air pollution (90.2%), while fewer were aware of alcohol (64.9%), obesity (61.6%), overweight (58.1%), and processed meat (53.3%) as cancer risk factors. A minority of the responders were aware of low levels of physical activity (48.1%), red meat (38.9%), low intake of fruit and vegetables (32.9%), low intake of whole grains (23.7%) and not breast-feeding one’s child (9.3%) as risk factors. For most risk factors, the awareness was significantly higher among college/university educated respondents. Conclusions: Beside significant awareness gaps among the Swedish general public regarding several established cancer risk factors, this study found an educational gradient, illuminating important differences in cancer prevention awareness. Achieving meaningful improvements in cancer prevention awareness requires coordinated system-level and policy-level actions to reduce the educational gradient and ensure equitable access to information. This could in turn increase people’s ability to make well-informed decisions regarding their lifestyle habits and preventive measures.

Background: The European Code Against Cancer (ECAC) aims to increase the awareness of modifiable cancer risk factors among the general public. A goal set by the European Commission was that 80% of European citizens should be aware of this code by 2025. This study aims to examine the awareness and attitudes towards the ECAC among the general public in Sweden. Methods: A randomly selected sample of 1520 Swedes (18–84 years old) were recruited from a survey panel and invited to respond to an online study-specific questionnaire. The questionnaire included general questions regarding cancer prevention, as well as awareness and attitudes specific to the ECAC. Data were analysed univariately and with adjusted logistic regression, using post-stratification weights based on gender, age, education, and expressed political party orientation. Results: In total, 3.7% of the respondents had heard about the ECAC before taking this survey. Respondents with a college/university education were more likely to have heard about the ECAC (odds ratio [OR] 2.23; 95% confidence interval [CI] 1.23–4.06). Males (OR 0.56; 95% CI 0.32–0.99), and those living alone (OR 0.47; 95% CI 0.23–0.95) were less likely to have heard about the ECAC. In total, 60.6% of the respondents agreed with the ECAC recommendations, while 27.4% reported that their motivation to improve their lifestyle increased after reading the ECAC. Conclusions: Awareness of the ECAC among the general public in Sweden is very low. Still, a majority seem to agree with its recommendations. The results also indicate that the ECAC motivates some, but far from all, to improve their lifestyle habits to reduce their cancer risk. Consequently, further research is warranted on how the ECAC best could and should be used in order to improve cancer prevention awareness and motivation.

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.

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.

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 i...

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. 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.

There is a continuing challenge to ensure equitable access to youth healthcare services in small rural communities. Sweden’s ‘youth clinic’ system is an attempt to provide comprehensive youth health services from a single centre, but many small rural communities have not adopted the youth clinic model. This study uses one case study to examine what the issues might be in establishing a youth clinic in a small rural community. The objective of this paper is to examine the issues around youth healthcare access in one municipality without a youth clinic, and to explore whether and how a youth clinic model might contribute to access in this municipality. Three categories emerged from the analysis; (i) rural closeness; both good and bad, (ii) youth are not in the centre of the healthcare organization, and (iii) adapting youth clinics to a rural setting. While limited to one case example, the study provides valuable insights into youth health service planning in particular types of rural communities. This paper identified structural barriers to developing youth-specific services, and some alternative approaches that might be more suitable to smaller communities.

Aims and objectives We aimed 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 describe 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 i) The need of being valued, ii) The need of being informed, and iii) 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 healthcare to manage the diagnostic process, and to reduce patients’ struggle for care was also identified. Relevance to the clinical practice Patients are satisfied when healthcare is organized in a patient‐/person centered manner, i.e. in accordance to patients’ needs, avoiding gatekeeping, and when HCPs interact respectfully in encounters. Accessible HCPs during the diagnostic process of melanoma are required in order to inform, support and navigate patients within the healthcare system and through their diagnostic journey.