Attitudes towards risk-stratified breast cancer screening: a population-based survey among 5,001 Danish women.

BACKGROUND: The individual woman's risk of being diagnosed with breast cancer can now be estimated more precisely, and screening can be stratified accordingly. The risk assessment requires that women are willing to provide a blood test, additional personal information, to know their risk, and alter screening intervals. This study aimed to investigate Danish women's attitudes towards risk-stratified breast cancer screening. METHODS: An online, cross-sectional survey was conducted among Danish women aged 52-67 years. We used logistic regression analyses to assess how personal characteristics were associated with the women's attitudes. RESULTS: 5,001 women completed the survey (response rate 44%) of which 74% approved of risk estimation to potentially alter their screening intervals. However, only 42% would accept an extended screening interval if found to have low breast cancer risk, while 89% would accept a reduced interval if at high risk. The main determinants of these attitudes were age, education, screening participation, history of breast cancer, perceived breast cancer risk and to some extent breast cancer worry. CONCLUSION: This study indicates that women are positive towards risk-stratified breast cancer screening. However, reservations and knowledge among subgroups of women must be carefully considered and addressed before wider implementation of risk-stratified breast cancer screening in a national program.

Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families' and professionals' experiences.

BACKGROUND: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors. AIM: To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved. DESIGN: Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis. SETTING/PARTICIPANTS: Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children's bereaved parents (n = 8) and grandparents (n = 7), and community-based professionals (n = 16). Also, hospital-based professionals (n = 10) were interviewed about the children's end-of-life care through group interviews. RESULTS: We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the "Home-Based Pediatric End-of-Life Care Model for Children with Cancer." CONCLUSIONS: By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our "Home-Based Pediatric End-of-Life Care Model for Children with Cancer" offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families.

Socioeconomic position and maintenance therapy in children with acute lymphoblastic leukemia: A national cohort study.

BACKGROUND: Socioeconomic differences in survival among children with acute lymphoblastic leukemia (ALL) have been reported in high-income countries and there is an unmet need for strategies to identify vulnerable patient subgroups. Reported differences in survival for children from families with different socioeconomic positions seem to arise when starting maintenance therapy. This could reflect reduced physician's compliance or family adherence to maintenance therapy. METHODS: This nationwide cohort study with extensive monitoring of systemic methotrexate (MTX)/6-mercaptopurine (6MP) dosing and metabolite levels, retrospectively investigated 173 Danish children treated according to The Nordic Society for Pediatric Hematology and Oncology ALL2008 protocol from 2008 to 2016. RESULTS: Significantly lower prescribed doses of MTX and 6MP were seen in the children in families with short parental education (short vs. medium vs. higher education: mMTX: 13.8, 16.2, and 18.6 mg/m2 /week; p < .01; m6MP: 47.4, 64.9, and 66.1 mg/m2 /day; p = .03) or parents unemployed/not in workforce (unemployed/not in workforce vs. mixed vs. at work: mMTX: 15.0, 19.9, and 17.2 mg/m2 /week; p < .01; m6MP: 54.8, 72.0, and 65.1 mg/m2 /day; p < .01). When assessing family adherence by analyzing MTX and 6MP metabolite levels, including per prescribed dose of MTX and 6MP, we found no significant differences by levels of parental education, affiliation to work market, or income (p > .05 for all comparisons). CONCLUSIONS: These results indicate that inferior physician compliance to protocol recommendations on drug dosage rather than families' adherence to therapy may contribute to the association between socioeconomic position and cure rates in childhood ALL, although precise mechanisms remain to be explored.

Socioeconomic position and prediagnostic health care contacts in children with cancer in Denmark: a nationwide register study.

BACKGROUND: While underlying mechanisms and pathways of social inequalities in cancer survival have been extensively examined in adults, this is less so for children with cancer. Hypothesized mechanisms include prediagnostic utilization of and navigation through the health care system, which may differ by socioeconomic resources of the families. In this nationwide register-based study we investigated the association between measures of family socioeconomic position in relation to prediagnostic health care contacts and stage of disease at diagnosis in children with cancer in Denmark. METHODS: We identified all children diagnosed with a cancer at ages 0-15 years in 1998-2016 (N = 3043) from the Danish Childhood Cancer Registry. We obtained comprehensive information on measures of socioeconomic position, parental health and prediagnostic contacts to both general practitioners and hospitals 24 months prior to diagnosis from various national registries. We fitted multivariable conditional logistic regression models for the association of family socioeconomic and health-related variables with firstly, frequent health care contacts and secondly, advanced stage. RESULTS: We found higher odds ratios (OR) of frequent both overall and emergency health care contacts in the last 3 months before diagnosis in children from households with short parental education and mixed affiliation to work market, when compared to children with high family socioeconomic position. Further, children of parents with depression or of non-Western origin, respectively, had higher OR for frequent overall and emergency contacts. We found no association between socioeconomic position, parental health and stage of disease. CONCLUSION: Families with socioeconomic disadvantage, non-Western origin or depression more frequently utilize prediagnostic health care services, both generally and in the acute setting, indicating that some disadvantaged families may struggle to navigate the health care system when their child is sick. Reassuringly, this was not reflected in disparities in stage at diagnosis. In order to improve the diagnostic process and potentially reduce health care contacts, attention and support should be given to families with a high number of health care contacts over a short period of time.

Parent's perspectives of the pathway to diagnosis of childhood cancer: a matter of diagnostic triage.

BACKGROUND: Early diagnosis is crucial for the treatment of childhood cancer as it in some cases can prevent progression of disease and improve prognoses. However, childhood cancer can be difficult to diagnose and barriers to early diagnosis are multifactorial. New knowledge about factors influencing the pathway to diagnosis contribute to a deeper understanding of the mechanisms that influence this time span. Qualitative research in the field is sparse but can be expected to lead to additional useful insights that could contribute to efforts shorten time to diagnosis. The purpose of this study was to explore parents' experiences of the pathway to diagnosis in the time between their noticing bodily or behavioural changes and their child's diagnosis. METHODS: The study is a qualitative interview study carried out in large Danish hospital. Thirty-two interviews with a total of 46 parents of children with cancer were included for analysis. The children were diagnosed with haematological cancers (n = 17), solid tumours (n = 9) or brain tumours (n = 6). Data were analysed applying the theoretical model of pathways to treatment and an inductive-deductive approach. A revised 'diagnostic triage' model was developed and validated by member checking. RESULTS: The pathway to diagnosis was influenced by various factors which we present as consistent parts of a new diagnostic triage model. Each factor impacts the level of urgency assigned to bodily and behavioural changes by parents, general practitioners and specialists. The model of diagnostic triage was developed and validated to understand mechanisms influencing time from the point parents notice changes in their child to diagnosis. The model identifies dynamic movement between parental triage in everyday life and professional triage in a healthcare system, both affecting appraisal and case escalation according to: 1) the nature of bodily and behavioural changes, 2) parental intuition, 3) social relations, 4) professional-child-parent interaction, and 5) specialist-child-parent interaction. CONCLUSIONS: Diagnostic triage is a model which explains mechanisms that shape the pathway to diagnosis. It is a contribution aimed at supporting the clinical diagnostic process, that ultimately could ensure more timely testing, referral and diagnosis, and also a novel theoretical framework for future research on diagnostic pathways.

[Method description: user-led healthcare in patient pathways].

User-led healthcare is a method aimed at involving patients systematically in the planning and execution of their treatment and care. The method ensures that the extent of the patients' responsibilities is aligned with their individual preferences. It is a way to ensure patient-centeredness in a healthcare system which is under pressure, and in which patients become a critical resource.

[Involvement of patients has not been fully implemented in Danish health care]. / Patientinddragelse er endnu ikke fuldt implementeret i sundhedsvæsenet.

In Denmark, there is a focus on patient involvement. Health professionals want to involve patients, but have diverse interpretations of what this entails, which complicates knowledge dissemination. Interventions are scattered and diverse, and often do not systematically involve patients' knowledge. Studies have shown that patients want to be involved and contribute with knowledge, but this only happens to a limited degree. Involvement of patients is often limited to involving their resources in the form of self care rather than integrating their knowledge into their treatment and care.