open access: Children and young adults with parents with cancer: a population-based study

Children and young adults with parents with cancer: a population-based study

Background: 
Today many people are choosing to have children later in life. Additionally, the use of sophisticated diagnostic tools and screening modalities has increased over recent years. Because of these factors, cancer is being diagnosed more frequently during the child-rearing years. Sociodemographic and cancer-related information on families and minor (0–18 years) and young adult (YA) (19–25 years) children experiencing parental cancer is scarce, but this information is vital for healthcare initiatives aimed toward those potentially adversely affected. Therefore, the aim of this study was to describe features of families and minor and YA children affected by parental cancer in a nationwide population.
  
Conclusion: 
Adequate assistance for minor and YA children affected by parental cancer requires knowledge of their number and characteristics. Parental cancer is more common than previously suggested: the annual incidence of parental cancer for children under 18 years of age is 0.3%, whereas approximately 4% of children aged 0–25 years have or have had parents diagnosed with cancer, corresponding to a population prevalence of 1.4%. Around 20% of these children experience parental death, and surveys of live respondents should account for this.

abstract: Age-Specific Incidence Rates for Breast Cancer in Carriers of BRCA1 Mutations from Norway (compared to Poland/North America)

Clin Genet. 2012 Feb 9. doi: 10.1111/j.1399-0004.2012.01855.x. [Epub ahead of print]

"Incidence rates of breast cancer among women with a BRCA1 mutation vary according to their reproductive histories and country of residence. To measure cancer incidence, it is best to follow cohort of healthy women prospectively. We followed a cohort of 675 women with a BRCA1 mutation who had not had breast or ovarian cancer prior to inclusion and who had a normal clinical examination and mammography at first visit. After a mean of 7.1 years, 98 incident cases of breast cancer were recorded in the cohort. Annual cancer incidence rates were calculated, and based on these, a penetrance curve was constructed. The average annual cancer risk for the Norwegian women from age 25 to 70 was 2.0%. Founder mutations had lower incidence rate (1.7%) than less frequent mutations (2.5%) (p=0.03). The peak incidence (3.1% annual risk) was observed in women from age 50 to 59. The age-specific annual incidence rates and penetrance estimate were compared with published figures for women from North America and from Poland. The risk of breast cancer to age 70 was estimated to be 61% for women from Norway, compared to 55% for women from Poland and 69% for women from North America. (of those BRCA1)"

Norway to bring cancer-gene tests to the clinic : Nature News & Comment

"Norway is set to become the first country to incorporate genome sequencing into its national health-care system. The Scandinavian nation, which has a population of 4.8 million, will use ‘next-generation’ DNA sequencers to trawl for mutations in tumours that might reveal which cancer treatments would be most effective.

In its three-year pilot phase, the Norwegian Cancer Genomics Consortium will sequence the tumour genomes of 1,000 patients in the hope of influencing their treatments. It will also look at another 3,000 previously obtained tumour biopsies to get a better idea of the mutations in different cancers, and how they influence a patient's response to a drug. In a second phase, the project will build the laboratory, clinical and computing infrastructure needed to bring such care to the 25,000 Norwegians who are diagnosed with cancer each year......"

"Similar projects are under way in the United Kingdom and at research hospitals in the United States, France and elsewhere. But Norway’s will be among the first to look for tumour mutations using next-generation DNA sequencing rather than conventional genetic testing."

Stein Kaasa (Norway): Let me show you what integrated palliative care can do - Cover Story - Issues 46 - Articles - Cancer World (open access)

"One aspect of his field particularly annoys Kaasa, and that is terminology. As far as he is concerned, it is called ‘palliative care’ or ‘palliative medicine’ and should cover the vast majority of the advanced cancer journey. But he says confusion can be spread by the use of ‘end of life care’ and ‘supportive care’. “In some cancer centres this is often about competing for resources, with some focusing on what they call earlier symptom control in ‘supportive care’, while leaving others to do the ‘end of life’. Yes, if you have a large palliative care team you can have people focusing more on early symptoms, but really this is often about a resources battle and not integrated care, and of course again it is the patients who fall into the gaps.”"

Multinational Comparisons of Health Systems Data, 2011 - The Commonwealth Fund including link to 2011 patient care coordination (11 countries)

"International comparisons of health care systems offer valuable tools to health ministers, policymakers, and academics wishing to evaluate the performance of their country's system. In this chartbook, we use data collected by the Organization for Economic Cooperation and Development (OECD) to compare health care systems and performance on a range of topics, including spending, hospitals, physicians, pharmaceuticals, prevention, mortality, quality of care, and prices. We present data across several industrialized countries: Australia, Canada, Denmark, France, Germany, Japan, the Netherlands, New Zealand, Norway, Sweden, Switzerland, the United Kingdom, and the United States. Whenever possible, we also present the median value of all 34 members of the OECD.......

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abstract/full access: Cancer survival in Australia, Canada, Denmark, Norway, Sweden, and the UK, 1995–2007 (the International Cancer Benchmarking Partnership): an analysis of population-based cancer registry data : The Lancet

Note: Full access to article is free after registration (free)


"Background

Cancer survival is a key measure of the effectiveness of health-care systems. Persistent regional and international differences in survival represent many avoidable deaths. Differences in survival have prompted or guided cancer control strategies. This is the first study in a programme to investigate international survival disparities, with the aim of informing health policy to raise standards and reduce inequalities in survival.  

Methods Data from population-based cancer registries in 12 jurisdictions in six countries were provided for 2·4 million adults diagnosed with primary colorectal, lung, breast (women), or ovarian cancer during 1995—2007, with follow-up to Dec 31, 2007.