On May 6, 2010, the Pew Research Center released a study on changes in the demographics of motherhood in the United States. Comparing data from the National Center for Health Statistics (NCHS) and the Census Bureau from 1990 and 2008, the “The New Demography of American Motherhood” noted several dramatic shifts in who is becoming a mother in the past two decades. The report also incorporated the results of a nationally representative survey of Americans about attitudes on several trends regarding birth patterns conducted by the Pew Center in April 2009.

Among the most notable were the changes in the age of the women having babies. In 2008, there were more births to women over 35 (14%) then to teenagers (10%).  Indeed, the rate of births to women across race and ethnic groups over age 35 grew 64% between 1990 and 2008, with the birth rate of women over 40 tripling since 1990 (though still only 3% of all births; 43% of all births are still among women under age 35). The authors of the study note that the increase in older women having babies is part of the larger demographic trend in the United States; there are fewer women in their prime child-bearing years now and the youngest baby-boomers are in their mid-40s. In their survey, the Pew Research Center found that a plurality of Americans (47%) do not think it makes much difference if a woman becomes a mother over the age of 40. However, 33% disapproved of women over 40 having babies.

As part of this trend of older mothers, the study also cited an increase in the use of fertility treatments, especially for women over 30. Moreover, a third of all adults told the Pew survey that they know of a woman who has undergone fertility treatment. For college graduates, that number was 54%, and for those with a household income of $100,000 or more, 56% knew a woman who had undergone fertility treatments. A plurality of Americans (39%) told the Pew Center that it did not make a difference if women used fertility treatments in order to get pregnant; 28% said it was a good thing, 23% said it was bad for society, and 10% said they did not know or did not give an answer. However, younger respondents were more likely to say the trend was not a social problem. Of those 18-49, 46% believed it was not a concern, compared to 31% of adults who were 50 or older. Additionally, those with a college degree saw the trend as not being a social concern compared to those with at most a high school diploma (48% compared to 35%).

Another significant demographic change is the increase in the Hispanic population in the United States, a population with the highest birth rates in the country. Using 2004 data, the study found that nearly 1 in 4 babies born had a Hispanic mother (24%), up from 1 in 7 in 1990 (14%).

Finally, in analyzing the NCHS data, the Pew study found an increase in unmarried women having children: in 2008, women who were not married accounted for 41% of births, up from 28% in 1990. Again, the study tied this change to the larger demographic change of people marrying later in life and/or not marrying at all. The Pew Center survey found, however, that Americans’ attitudes are not consistent with this trend: most Americans (65%) indicated that the rise in unmarried mothers was bad for society.

An executive summary with a link to a pdf of the full report can be found on the Pew Research Center web site:  http://pewresearch.org/pubs/1586/changing-demographic-characteristics-american-mothers

Last month, the Institute of Medicine issued a report on the state of clinical cancer trials in the United States.  The report, A National Cancer Clinical Trials System for the 21st Century: Reinvigorat­ing the NCI Cooperative Group Program, reviewed the process of the trials and the stakeholders in the trials and found that the process was inefficient in how it developed, launched, and conducted clinical trials, an inefficiency which often leads to long delays.  In its editorial concerning the IOM’s report, The New York Times said the system was in a “state of crisis” and the IOM report was a “disturbing verdict.”  The editorial continued: “Unless the shortcomings are remedied, some of President Obama’s ambitious health care reforms will be jeopardized and his audacious goal of finding ‘a cure for cancer in our time’ will have almost no chance at all.”  The Times found the “most shocking deficiency” was that around “40 percent of all advanced clinical trials sponsored by the Cancer Institute are never completed.”  This, The Times stated, was “an incredible waste of effort and money, and a huge obstacle at a time when researchers are developing promising new therapies that must be rigorously tested.”

As part of its report, the IOM provided a series of recommended changes across the board to promote the effectiveness and efficiency of clinical cancer trials:

1)      Improve the speed and efficiency of the design, launch, and conduct of clinical trials.

2)      Make optimal use of scientific innovations.

3)      Improve the selection, prioritization, support, and completion of clinical trials.

4)      Foster the expanded participation of both patients and physicians.

The IOM report concluded by calling for the implementation of its recommendations to reinvigorate cancer trials: “treatments for cancer will be delayed and patient lives will be lost unnecessarily unless the efficiency and effectiveness of the clinical trials sys­tem improves.”  All stakeholders, the report stated, “including physicians, patients, and health care insurers, as well as NCI, other fed­eral agencies, academia, foundations, and industry, must reevaluate their roles and responsibilities in cancer clinical trials and work together to develop an improved, efficient multidisciplinary trials sys­tem.”  As The New York Times reiterated, “the health of nearly 1.5 million patients diag­nosed with cancer in the U.S. each year depends on these efforts.”

A National Cancer Trials System for the 21^st Century, Report Brief: http://www.iom.edu/~/media/Files/Report%20Files/2010/A-National-Cancer-Clinical-Trials-System-for-the-21st-Century-Reinvigorating-the-NCI-Cooperative/NCI%20Cancer%20Clinical%20Trials%202010%20%20Report%20Brief.ashx

The New York Times editorial, “Faltering Cancer Trials,” (April 24, 2010): http://www.nytimes.com/2010/04/25/opinion/25sun1.html?scp=2&sq=Cancer&st=nyt

Labeled on its cover as “the insider’s guide to cancer in your 20’s and 30’s,” Kairol Rosenthal’s recently published book Everything Changes explores what having cancer is like for young people. Through interviews with 25 young adults aged 20 to 39 with cancer who live across the United States, Rosenthal set out to find material she could use to compile “the antithesis of the cancer memoir.” She wanted the “raw, confessional talk that spills out when one is not conscious of portraying an image on the page,” narratives that could, in her words, “rip young adult cancer patients from the confines of . . . limited descriptors and perceptions.” The book is full of honest accounts, some funny, some heartbreaking, but all work together to achieve Rosenthal’s goal of giving voice to young men and women who do not necessarily want to be perceived in ways we have come to expect in the cancer memoir genre.

Image: www.dsf.health.state.pa.us

Of particular interest to me, being a postdoctoral fellow at the Oncofertility Consortium, were two things. The first were the narratives that spoke about pregnancy and babies. One young woman (Rosenthal used pseudonyms for many of the people she interviewed, and because nearly all told her details they did not want publicly shared, she changed identifying information for nearly all of them) told Rosenthal that visualizing herself as having a baby helped her get through chemotherapy. Another told her of her pain when she “woke up in the recovery room” to have her doctor – who was six months pregnant – tell her that she had to have an unexpected complete hysterectomy. Having her visibly pregnant doctor tell her, she told Rosenthal, was “like adding insult to injury.” Another young woman told Rosenthal that she had a hard time seeing people with babies knowing she was infertile.

The second is that, in addition to the narratives, Rosenthal also provides a list of resources for a variety of topics of interest to young people with cancer, including a section on fertility and adoption. She refers to the Fertility Preservation Patient Navigator at Northwestern Memorial Hospital – the Fert Line – as the “first and only fertility preservation patient navigator in the field” one she hopes will become a “model for cancer institutions worldwide.”

Everything Changes is often irreverent while respectful. But mostly it is timely, a good resource, and reflective of other voices that have recently emerged – like those heard on the website I’m Too Young for This! – from young adults with cancer.

Karol Rosenthal, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s (John Wiley and Sons, 2009)