Portal de Periódicos da CAPES

A hard push to help protect survivors of childhood cancer

2018; Wiley; Volume: 126; Issue: 11 Linguagem: Inglês

10.1002/cncy.22079

1934-6638

Bryn Nelson,

Ethics and Legal Issues in Pediatric Healthcare

Part 1 of a 2-part series regarding how physicians are studying and aiding survivors of pediatric cancer Cardiovascular disease. Breast cancer. Psychosocial distress. Sleep disturbances. Financial ruin. The long-running Childhood Cancer Survivor Study and other research efforts have helped to illuminate the considerable risks faced by this fastgrowing group of long-term survivors. “We’ve learned a lot about who’s at risk,” says Todd Gibson, PhD, an epidemiologist and assistant member of the faculty at St. Jude Children’s Research Hospital (St. Jude) in Memphis, Tennessee. “But now we need to identify what we can do to change their risks. So what interventions can we do?” The answers may not be readily apparent. “You want to have evidence-based medicine that says if you do this screening or you’re going to implement this intervention, you can reduce mortality within this population,” says Melissa Hudson, MD, a member of the faculty at St. Jude, where she is director of the cancer survivorship division. “Those studies will never happen in pediatric cancer patients, because the outcomes may be years and years and years—10, 20, or more years—away from the exposure.” In addition, randomized controlled trials regarding the effectiveness of breast or lung cancer screening in reducing mortality in this population would require thousands of participants, she says. “We’re never going to have that.” Nevertheless, research can help to build the case for screening and early detection by revealing strong signals that tie pediatric cancer or treatment exposure to secondary cancers, cardiovascular disease, or other bad outcomes. Further studies, Dr. Hudson says, may help researchers and health care agencies streamline screening and prioritize funding “for these outcomes that we know are quite impactful.” Kevin Oeffinger, MD, professor of medicine and director of the Supportive Care and Survivorship Center at Duke Cancer Institute in Durham, North Carolina, has focused much of his recent research on breast cancer screening of survivors of pediatric cancer. A recently submitted study, he says, paints a “very sobering” picture of breast cancer specific mortality among the patient population. “Early diagnosis, without a question in my mind, saves lives,” he says. “Hopefully, we’ll move the needle on that.” Dr. Oeffinger and his colleagues began by quantifying the breast cancer risk of a woman treated for childhood cancer with chest radiotherapy, and found that it is relatively equivalent to the risk of a woman with the BRCA1 mutation. In other words, 1 in 3 survivors treated with chest radiotherapy will develop breast cancer by the age of 50 years, compared with 1% to 2% of the general population. Subsequent research suggested that, for the at-risk population, mammography screening was falling well short of recommendations and that “virtually no one” was undergoing recommended breast magnetic resonance imaging (MRI), Dr. Oeffinger says. “No one really recognized the risk.” He and his colleagues also found that the “vast majority” of the patients were no longer being followed at a cancer center. The lack of dedicated long-term care, he and others say, often prevents patients from accessing critical services and highlights the need for better care coordination between oncologists and community-based providers. “We can cheerlead a lot but then we can look at a given family and go, ‘Oh my goodness, how are they ever, ever going to accomplish all this with the insurance they have or with the small community they’re going to?’” Dr. Hudson says. “So we know that there are huge barriers to accomplishing this.” Two companion studies, EMPOWER-I and ECHOS, tried to break down some of the barriers by sending information to cancer survivors to help them better understand the risks and screening recommendations for breast cancer and cardiovascular disease, respectively. After mailing them information and advice on where to undergo low-cost screening, the researchers followed up with a telephone counseling session. The ECHOS project, led by Dr. Hudson, found that a survivorship care plan plus telephone counseling from a nurse was effective in increasing echocardiogram screening among a high-risk population previously treated with cardiotoxic therapy.1 The EMPOWER-I results, however, were more mixed. “We were able to double mammography rates but we didn’t budge MRI rates,” Dr. Oeffinger says.2 He and his collaborators concluded that, beyond motivating patients, they would need to help to motivate physicians and their practices as well. For the 3-armed EMPOWER-II study, which was funded with a $3 million grant from the National Cancer Institute, one group of women will receive everything sent to the EMPOWER-I participants. A second group will receive that information plus smartphone-based push notifications, text messages, and videos designed to motivate the patients. The 7 video vignettes feature a multiethnic cast and address potential barriers to receiving a mammogram or MRI, such as finding the right primary care provider or covering the considerable costs of imaging, and how to overcome them. Giving survivors access to education, expertise, and support can help them make healthy lifestyle decisions and manage the longterm effects of treatment, the risk of second cancers, and psychological concerns. —Lynda Vrooman, MD, MSc Improved clarity regarding the use-fulness of such care plans could mark a big step forward. So far, Dr. Hudson says, “[The research has] not come to fruition in telling us, ‘This is the way to do it and this can make a big difference,’ for a variety of reasons.” Even systematically evaluating the plans can be difficult due to the relative lack of linked records within the US health care system, she adds. Other hurdles have stymied even proven prevention efforts. Dr. Hudson says she is intensely frustrated by the relative lack of human papillomavirus (HPV) vaccinations among at-risk cancer survivors. “It’s not getting the same promotion as the other vaccines,” she says, despite its effectiveness in preventing cervical and other cancers. In response, Dr. Hudson and her colleagues began promoting HPV vaccination directly to survivors and their families. Nevertheless, they have had to repeatedly address misinformation and vaccine safety concerns that families admitted to hearing about on social media. “I think we’ve done a disservice in oncology by not promoting this sooner,” she says. A new program at St. Jude will encourage all clinicians to include the HPV vaccine as part of the center’s survivorship clinic services once patients are eligible to receive it. “It’s a very powerful message from the oncologist that saved their life to say, ‘You need this cancer prevention vaccine,’” she says. Despite the challenges, Dr. Hudson points to reasons for optimism such as innovative nurse-led psychology programs that are focusing on neurocognitive and psychosocial rehabilitation to help survivors enhance and maintain the skills needed for school, work, and other settings. In addition, she is heartened by physical therapy studies aimed at helping survivors to maintain their strength, coordination, and balance. Meanwhile, survivorship clinics have begun to proliferate. Lynda Vrooman, MD, MSc, associate medical director of the David B. Perini, Jr. Quality of Life Clinic for childhood cancer survivors at Dana-Farber Cancer Institute in Boston, Massachusetts, says her clinic emphasizes the importance of patient education. Giving survivors access to education, expertise, and support can help them make healthy lifestyle decisions and manage the long-term effects of treatment, the risk of second cancers, and psychological concerns, she says. Financial aid and advice is another critical service, because cancer can significantly interfere with a patient’s education or work options and lead to “significant health costs even years after treatment is completed,” Dr. Vrooman says. As such, her survivorship clinic provides counseling on programs that can offer financial assistance or support education and job training. Both she and Dr. Hudson emphasize the critical importance of access to insurance that covers preexisting conditions. To address concerns regarding breast cancer screening costs, Dr. Oeffinger’s group is partnering with Right Action for Women (RAW), a financial assistance program run by the nonprofit Christina Applegate Foundation. RAW helps to pay for MRIs among women at high risk of breast cancer who would not otherwise be able to afford the screenings. For insured patients, Dr. Oeffinger’s group has developed a template for a letter that physicians can send to insurance carriers to help ensure screening coverage. “We are very respectful of the financial toxicity that this patient population often faces,” he says. Slowly but surely, the combined assistance may help patients overcome a lifetime of worry.