Family resilience of families with parental cancer and minor children: a qualitative analysis

IntroductionEstimated 50,000 minor children in Germany experience a newly diagnosed cancer in one of their parents every year. Family resilience has proven to be an important concept against life crises. However, little research exists regarding family resilience in the context of parental cancer with minor children. Based on the “Family Resilience Framework,” the aim of the study is to investigate the processes of family resilience of affected families. In addition, we explore which combinations of promoting family resilience processes can be characterized.MethodsAs part of the mixed-method quasi-experimental interventional study “F-SCOUT,” a qualitative content analysis was used to analyze the documentation of the “Family-Scouts” (a fixed contact person who advises, accompanies, and supports the families). Documentation was performed by families’ study inclusion (T0), after 3 months (T1) and 9 months (T2) concerning current family situation, organization of everyday life, emotional coping, open communication within the family, and planned tasks.ResultsThe N = 73 families had between one and six children. In 58 (79%) families, the mother had cancer. In the course of the analysis, a category system with 10 main categories and 36 subcategories emerged. Family resilience processes were described to different extents. Combinations of categories promoting family resilience were characterized by the use of social resources, flexibility, economic resources, and open communication.DiscussionThe findings are consistent with existing assumptions about family resilience in terms of the importance of social resources, family cohesion, mutual support, flexibility, open communication, and psychological well-being. In contrast to the findings of previous research, spirituality, and collaborative problem-solving indicate less centrality here. In turn, the findings on economic resources and information-seeking provide a valuable addition to the family resilience literature in the context of parental cancer with minor children.Clinical trial registrationClinicalTrials.gov, identifier NCT04186923

Global surveillance of cancer survival 1995-2009: analysis of individual data for 25,676,887 patients from 279 population-based registries in 67 countries (CONCORD-2)

BACKGROUND: Worldwide data for cancer survival are scarce. We aimed to initiate worldwide surveillance of cancer survival by central analysis of population-based registry data, as a metric of the effectiveness of health systems, and to inform global policy on cancer control. METHODS: Individual tumour records were submitted by 279 population-based cancer registries in 67 countries for 25·7 million adults (age 15-99 years) and 75,000 children (age 0-14 years) diagnosed with cancer during 1995-2009 and followed up to Dec 31, 2009, or later. We looked at cancers of the stomach, colon, rectum, liver, lung, breast (women), cervix, ovary, and prostate in adults, and adult and childhood leukaemia. Standardised quality control procedures were applied; errors were corrected by the registry concerned. We estimated 5-year net survival, adjusted for background mortality in every country or region by age (single year), sex, and calendar year, and by race or ethnic origin in some countries. Estimates were age-standardised with the International Cancer Survival Standard weights. FINDINGS: 5-year survival from colon, rectal, and breast cancers has increased steadily in most developed countries. For patients diagnosed during 2005-09, survival for colon and rectal cancer reached 60% or more in 22 countries around the world; for breast cancer, 5-year survival rose to 85% or higher in 17 countries worldwide. Liver and lung cancer remain lethal in all nations: for both cancers, 5-year survival is below 20% everywhere in Europe, in the range 15-19% in North America, and as low as 7-9% in Mongolia and Thailand. Striking rises in 5-year survival from prostate cancer have occurred in many countries: survival rose by 10-20% between 1995-99 and 2005-09 in 22 countries in South America, Asia, and Europe, but survival still varies widely around the world, from less than 60% in Bulgaria and Thailand to 95% or more in Brazil, Puerto Rico, and the USA. For cervical cancer, national estimates of 5-year survival range from less than 50% to more than 70%; regional variations are much wider, and improvements between 1995-99 and 2005-09 have generally been slight. For women diagnosed with ovarian cancer in 2005-09, 5-year survival was 40% or higher only in Ecuador, the USA, and 17 countries in Asia and Europe. 5-year survival for stomach cancer in 2005-09 was high (54-58%) in Japan and South Korea, compared with less than 40% in other countries. By contrast, 5-year survival from adult leukaemia in Japan and South Korea (18-23%) is lower than in most other countries. 5-year survival from childhood acute lymphoblastic leukaemia is less than 60% in several countries, but as high as 90% in Canada and four European countries, which suggests major deficiencies in the management of a largely curable disease. INTERPRETATION: International comparison of survival trends reveals very wide differences that are likely to be attributable to differences in access to early diagnosis and optimum treatment. Continuous worldwide surveillance of cancer survival should become an indispensable source of information for cancer patients and researchers and a stimulus for politicians to improve health policy and health-care systems

Lancet

BACKGROUND: In 2015, the second cycle of the CONCORD programme established global surveillance of cancer survival as a metric of the effectiveness of health systems and to inform global policy on cancer control. CONCORD-3 updates the worldwide surveillance of cancer survival to 2014. METHODS: CONCORD-3 includes individual records for 37.5 million patients diagnosed with cancer during the 15-year period 2000-14. Data were provided by 322 population-based cancer registries in 71 countries and territories, 47 of which provided data with 100% population coverage. The study includes 18 cancers or groups of cancers: oesophagus, stomach, colon, rectum, liver, pancreas, lung, breast (women), cervix, ovary, prostate, and melanoma of the skin in adults, and brain tumours, leukaemias, and lymphomas in both adults and children. Standardised quality control procedures were applied; errors were rectified by the registry concerned. We estimated 5-year net survival. Estimates were age-standardised with the International Cancer Survival Standard weights. FINDINGS: For most cancers, 5-year net survival remains among the highest in the world in the USA and Canada, in Australia and New Zealand, and in Finland, Iceland, Norway, and Sweden. For many cancers, Denmark is closing the survival gap with the other Nordic countries. Survival trends are generally increasing, even for some of the more lethal cancers: in some countries, survival has increased by up to 5% for cancers of the liver, pancreas, and lung. For women diagnosed during 2010-14, 5-year survival for breast cancer is now 89.5% in Australia and 90.2% in the USA, but international differences remain very wide, with levels as low as 66.1% in India. For gastrointestinal cancers, the highest levels of 5-year survival are seen in southeast Asia: in South Korea for cancers of the stomach (68.9%), colon (71.8%), and rectum (71.1%); in Japan for oesophageal cancer (36.0%); and in Taiwan for liver cancer (27.9%). By contrast, in the same world region, survival is generally lower than elsewhere for melanoma of the skin (59.9% in South Korea, 52.1% in Taiwan, and 49.6% in China), and for both lymphoid malignancies (52.5%, 50.5%, and 38.3%) and myeloid malignancies (45.9%, 33.4%, and 24.8%). For children diagnosed during 2010-14, 5-year survival for acute lymphoblastic leukaemia ranged from 49.8% in Ecuador to 95.2% in Finland. 5-year survival from brain tumours in children is higher than for adults but the global range is very wide (from 28.9% in Brazil to nearly 80% in Sweden and Denmark). INTERPRETATION: The CONCORD programme enables timely comparisons of the overall effectiveness of health systems in providing care for 18 cancers that collectively represent 75% of all cancers diagnosed worldwide every year. It contributes to the evidence base for global policy on cancer control. Since 2017, the Organisation for Economic Co-operation and Development has used findings from the CONCORD programme as the official benchmark of cancer survival, among their indicators of the quality of health care in 48 countries worldwide. Governments must recognise population-based cancer registries as key policy tools that can be used to evaluate both the impact of cancer prevention strategies and the effectiveness of health systems for all patients diagnosed with cancer. FUNDING: American Cancer Society; Centers for Disease Control and Prevention; Swiss Re; Swiss Cancer Research foundation; Swiss Cancer League; Institut National du Cancer; La Ligue Contre le Cancer; Rossy Family Foundation; US National Cancer Institute; and the Susan G Komen Foundation

Psycho-oncology care in breast cancer centres: a nationwide survey

Objective To describe psycho-oncological care structures and processes in German breast cancer centres from the perspective of the centre administration. Methods The findings are based on a postal survey of a representative random sample of surgical sites of certified breast cancer centres in Germany. Data were collected in 2013 and 2014. The questionnaire included questions about infrastructure, patient information standards, psycho-oncological services and aspects of organisational culture. Data analyses included frequencies, means and bivariate relationships. Results The return rate was 88.3% (53 hospital sites). Psycho-oncological care is provided by permanent employees in 87%. The average number of full-time-equivalent employees (FTE) is 1.23. Most breast cancer centres engage the occupational group of psycho-oncologists for psycho-oncological care (90%), followed by the medical service (80%) and breast care nurses (78%) (multiple answers were possible). The correlation coefficient between FTEs and surgical treatments per year is not significant (r=0.292, p=0.051). Hospitals are screening every inpatient for the need of psycho-oncological support in 76% of all sites. Frequently used screening instruments are distress thermometer (19%), clinical interview (13%) and basic psycho-oncological documentation (11%). Conclusion Our data provide insights into the self-reported structural and procedural quality of psycho-oncological care in German breast cancer centres. Further research should examine patient and caregiver perspective on the psycho-oncological services provided by breast cancer centres

Health literacy, mental disorders and fear of progression and their association with a need for psycho-oncological care over the course of a breast cancer treatment

This studyinvestigates the need for psycho-oncological care over the course of a breast cancer treatment and possible associated factors to develop such a need. The PIAT-Study was a longitudinal postal survey study conducted in Germany (2013 to 2014) with breast cancer patients (BCPs). Patients received a questionnaire at three-time points (T1: few days after surgery, T2: after 10 weeks; T3: after 40 weeks). This study considers information about patients' needs for psycho-oncological care, their breast cancer disease, social support, anxiety, health literacy (HL) and sociodemographic information. Data were analysed with descriptive statistics and logistic regression modelling to estimate the association between a need for psycho-oncological treatment and patient characteristics. N = 927 breast cancer patients reported their psycho-oncological need. 35.2% of patients report at least at one measuring point to be in need for psycho-oncological care. In a multiple logistic regression, noticeable determinants for developing such a need are an inadequateHL(OR = 1.97), fear of progression (FoP) (OR = 2.08) and psychological comorbidities (OR = 8.15) as well as certain age groups. BCPs with a low HL, suffering from a dysfunctional level of FoP or mental disorders are more likely to develop a need for psycho-oncological care

Participative development and evaluation of a communication skills-training program for oncologists-patient perspectives on training content and teaching methods

Background Using the 6-step approach to curriculum development for medical education, we developed a communication skills training (CST) curriculum for oncology and evaluated this curriculum from the perspective of cancer patients. Methods We conducted a qualitative interview study with cancer patients, collecting data using semi-structured face-to-face or telephone interviews with a short standardized survey. We fully transcribed the audiotaped interviews and conducted the content analysis using MAXQDA 2020. We analyzed the quantitative sociodemographic data descriptively. Results A total of 22 cancer patients participated, having a mean age of 60.6 (SD, 13.2) years and being predominantly female (55%). The patients believed that the CST curriculum addressed important aspects of patient-centered communication in cancer care. They emphasized the importance of physicians acquiring communication skills to establish a trusting relationship between doctor and patient, show empathy, inform patients, and involve them in treatment decisions. The patients had some doubts concerning the usefulness of strict protocols or checklists (e.g., they feared that protocol adherence might disturb the conversation flow). Discussion Although it was a challenge for some participants to take the perspective of a trainer and comment on the CST content and teaching methods, the patients provided a valuable perspective that can help overcome blind spots in CST concepts

Table_3_Family resilience of families with parental cancer and minor children: a qualitative analysis.docx

IntroductionEstimated 50,000 minor children in Germany experience a newly diagnosed cancer in one of their parents every year. Family resilience has proven to be an important concept against life crises. However, little research exists regarding family resilience in the context of parental cancer with minor children. Based on the “Family Resilience Framework,” the aim of the study is to investigate the processes of family resilience of affected families. In addition, we explore which combinations of promoting family resilience processes can be characterized.MethodsAs part of the mixed-method quasi-experimental interventional study “F-SCOUT,” a qualitative content analysis was used to analyze the documentation of the “Family-Scouts” (a fixed contact person who advises, accompanies, and supports the families). Documentation was performed by families’ study inclusion (T0), after 3 months (T1) and 9 months (T2) concerning current family situation, organization of everyday life, emotional coping, open communication within the family, and planned tasks.ResultsThe N = 73 families had between one and six children. In 58 (79%) families, the mother had cancer. In the course of the analysis, a category system with 10 main categories and 36 subcategories emerged. Family resilience processes were described to different extents. Combinations of categories promoting family resilience were characterized by the use of social resources, flexibility, economic resources, and open communication.DiscussionThe findings are consistent with existing assumptions about family resilience in terms of the importance of social resources, family cohesion, mutual support, flexibility, open communication, and psychological well-being. In contrast to the findings of previous research, spirituality, and collaborative problem-solving indicate less centrality here. In turn, the findings on economic resources and information-seeking provide a valuable addition to the family resilience literature in the context of parental cancer with minor children.Clinical trial registrationClinicalTrials.gov, identifier NCT04186923.</p