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WORKSHOP SUMMARY
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From page 1...
... Many cancer treatments are known not only to cause significant acute side effects, but also to lead to numerous long-term health risks and reduced quality of life. Even in cases where the cancer is considered curable, the consequences of treatment present substantial long-term health and psychosocial concerns (i.e., late effects)
From page 2...
... , Children's Oncology Group, pharmaceutical companies, and patient advocacy organizations, discussed and developed a menu of options for action to improve research, quality of care, and outcomes for pediatric cancer patients and their families. In addition, parents of children with cancer and pediatric cancer survivors shared their experiences with care and provided poignant personal perspectives on specific quality-of-life concerns and support needs for children and families across the life spectrum.
From page 3...
... As such, the very process of preparing this workshop exemplified what clinicians and health systems are striving to achieve for children and families -- highquality cancer care delivery across the care continuum that promotes truly interdisciplinary, person-centered, and family-oriented care. This workshop's particular emphasis on children also complements three other recent IOM initiatives, including IOM's workshop on Identifying and Addressing the Needs of Adolescents and Young Adults with Cancer
From page 4...
... The speakers' presentations (as PDF and audio files) have been archived.3 OVERVIEW OF THE CURRENT LANDSCAPE IN PEDIATRIC CANCER RESEARCH AND TREATMENT The workshop began with several presentations that provided an overview of the current landscape in pediatric cancer research and treatment, with some emphasis on the unique challenges and opportunities in pediatric drug development, as well as challenges in addressing treatment toxicities and late effects.
From page 5...
... •  rovide more funding mechanisms, such as small business P innovation research grants and targeted use of disease foundation funding, to support drug development for pediatric cancers. (Beth Ann Baber)
From page 6...
... • nclude PROs as a default in pediatric cancer clinical trials, and I ensure that the data are analyzed and published. (Reeve, Sung)
From page 7...
... (Bhatia) •  rovide a treatment summary and survivorship care plan to P patients upon completion of treatment for pediatric cancers.
From page 8...
... . Childhood cancers typically are quite different from adult cancers, and the smaller number of pediatric cancer cases overall presents barriers in conducting the large-scale clinical research necessary to develop and deliver new treatment breakthroughs, particularly for the less commonly occurring cancers.
From page 9...
... School of Medicine, described major landmarks in pediatric oncology, noting that once it became apparent that chemotherapy and radiation therapy could cure children of cancers, "We threw the kitchen sink at our children." In the 1980s and 1990s, researchers began to document the long-term effects of cancer therapies and see the relationship between dose or type of therapy given and the adverse effects experienced. Recognizing that radiation therapy was responsible for many of those long-term sequelae, physicians began substituting effective drugs for radiation therapy, as well as tailoring therapy based on risk factors for developing late effects from cancer treatment.
From page 10...
... These new types of drugs "will really be a new paradigm for pediatric cancer and long-term follow-up," Reaman said. He noted that it is challenging to do research and drug development for pediatric cancers because fewer than 15,000 pediatric cancers are diagnosed each year in the United States, which means that the number of children eligible for any particular clinical trial is small, especially because molecular
From page 11...
... Drugs that target adult cancers can receive FDA approval based on evidence of short-term benefit to patients -- the ability to extend life by a few months -- whereas more long-term benefits with minimal side effects are usually demanded of drugs for pediatric cancers, according to Reaman. Smith agreed, noting that most regulatory approvals for adult indications are for people who are not expected to live for a long period after their treatment, whereas children could potentially live for many decades after treatment, "We want to know the impact of a new drug on the survivorship for the pediatric patient, including its likelihood of inducing cognitive or cardiac disorders and second cancers," he explained.
From page 12...
... To encourage more expedient development of pediatric cancer drugs, FDA could mandate that studies of relevant adult drugs be conducted on pediatric populations earlier in the testing process, Reaman noted. A bigger challenge is fostering the development of new cancer drugs that are not already in use in adults and that would target pediatric cancers.
From page 13...
... TAP includes "Biotechnology Accelerator Awards," which are partner ships with biotech companies in which the Society splits the costs of pursuing an interesting idea with therapeutic potential, as well as "Academic Concierge Awards" in which the Society will work with outside companies who they fully fund to make a drug and do the necessary preclinical studies on it so that an academic investigator can test it in a clinical trial. TAP also has a clinical trials program that helps patients gain access to trials in their local communities.
From page 14...
... "Could their approach work for developing drugs for rare pediatric cancers? " he asked, noting that even outside of pediatric oncology, pharmaceutical companies are sinking less money into funding research and development, so "partnerships with foundations and academia become ever more important." He added that parents "can make a huge difference in helping to lead that effort." Reaman echoed the plea for parents and advocates to become more involved in drug development and noted that advocates did make a difference in adult drug development.
From page 15...
... He pointed out that many genetic discoveries on pediatric cancers have proven beneficial in adult cancers and vice versa. "All these cancers have things in common and we need to realize that if one cancer is bettered, all cancers are really bettered." Baber suggested more general public funds, such as small business innovation research grants, could be used to support drug development for pediatric cancers, and that there be more targeted use of disease foundation funds for drug discovery and development.
From page 16...
... "We need to think about the key factors ­ associated with treatment for a specific population -- the key short-term and long-term issues that diminish quality of life or quality of ­ urvivorship -- and s based on that, determine the most promising clinical research opportunities we could explore for that patient population," Smith said. INTEGRATING PEDIATRIC PALLIATIVE CARE: ENSURING CHILD AND FAMILY WELL-BEING ALONG THE CONTINUUM A key focus of the workshop was the integration of palliative care throughout the pediatric cancer care continuum to improve quality of life as well as survival.
From page 17...
... Several participants stressed the importance of supporting initiatives for training and increasing access to both ­ eneralist- and specialist-level palliative care in pediatric oncology g programs, and making these essential services available in all settings where children receive cancer care -- whether inpatient, ambulatory clinic, or at home. Training needs noted for physicians, nurses, social workers, child life specialists, and other professionals specifically included enhancing communication skills (such as discussing prognosis, goals of care, and care
From page 18...
... Feudtner and Joanne Wolfe, director of pediatric palliative care at Children's Hospital Boston and division chief of the Pediatric Palliative Care Service in the Department of Psychosocial Oncology and Palliative Care at the Dana-Farber Cancer Institute, also noted that many of these programs are understaffed or underfunded. For example, efforts to build a pediatric hospice targeting unmet end-of-life and respite care needs for children and families in Seattle5 have been stalled for lack of funding.
From page 19...
... . After hearing Gavin Lindberg's story about Evan's preventable suffering, as well as Gavin and his wife Wendy's ongoing grief and distress in its aftermath, Wiener stressed that no family should ever be told they can have home hospice care for their child if they do not have a pediatric provider available to support them.
From page 20...
... It was just absolutely brutal," Lindberg said. Although Lindberg felt that Evan received excellent oncol ogy care at Children's National Medical Center, Memorial Sloan Ketter ing Cancer Center, and The Children's Hospital of Philadelphia, and all three physicians who had cared for him at those institutions agreed that the best place for Evan to spend his final days was at home, his home hospice care was abysmal.
From page 21...
... Their experience and expertise was in caring for adults." Because the nurses were not comfortable administering intravenous pain medicines to pediatric patients, Evan was not given effective pain relievers and experienced extreme discomfort, distress, and anxiety. In addition, Evan had respiratory challenges that were not appropriately anticipated or addressed.
From page 22...
... "Integrating psychosocial care and palliative care is vital along the entire cancer care trajectory for positive outcomes. Cancer care is much more than just about the medicine.
From page 23...
... That could help explain why one study found that more than 60 percent of parents of children with cancer were ­ overly optimistic about their children's prognosis relative to what the doctor reported (Mack et al., 2007a)
From page 24...
... She added that "sometimes it is really the child that gets empowered, and when the child becomes empowered, that helps empower the parents." Wiener also stressed the importance of doing care planning soon after diagnosis to help ensure treatments are aligned with patient and family goals. Both advanced care planning and palliative care are associated with positive outcomes, she noted, including care consistent with patient preferences, better quality of life, less distress, and longer survival.
From page 25...
... Since the guide was first published in October 2012, patients have requested more than 20,000 copies, "which speaks to the need for a tool to open up these conversations," she said. A recent IOM report also recognizes the importance of such conversations and recommends a life-cycle model, in which advanced care planning occurs at key developmental milestones, including when a life-limiting illness is diagnosed (IOM, 2015)
From page 26...
... , and added, "Palliative care enhances well-being and strength and resilience, and all of that is needed in order to be able to have the reserve to undergo cancer treatment successfully." Hope for cure, life extension, a miracle… Individualized blending of care directed at underlying illness and End-of physical, emotional, social, and spiritual life care needs of child and family Bereavement care with continuous reevaluation and adjustment Hope for comfort, meaning… FIGURE 1  Model of pediatric palliative care delivery across the care continuum. SOURCE: Wolfe presentation, March 9, 2015.
From page 27...
... . Several studies done by Wolfe and others have documented that there is insufficient relief of the pain and suffering of pediatric cancer patients, even at facilities that offer robust palliative care.
From page 28...
... Feudtner called on medical schools to train physicians in practicing kindness, and imbuing them with a sense of duty and responsibility around kindness. Parents also need to be educated about pediatric palliative care and how it can help them and their children throughout the care continuum, Wiener pointed out.
From page 29...
... "These different guides and conversation tools can be taught and handed to families so they don't live in fear of being asked that question," she said. Wiener suggested integrating a palliative care service into pediatric oncology practices, but noted, "One does not need to have a palliative care service to integrate palliative care concepts, such as paying attention to symptoms, personal goals and values, and quality of life throughout care and extending beyond the hospital into the ambulatory and home setting." She suggested taking a team approach to palliative care and relying on psychosocial oncology professionals, including social workers, psychologists, psychiatrists, and child life specialists, who are trained in providing palliative care throughout the disease trajectory and into survivorship.
From page 30...
... Workshop participants discussed the psychosocial needs of children and their families and provided examples of ways to predict and screen for distress as well as interventions to alleviate distress. Participants also discussed standards of psychosocial care, capacity for providing that care, and research needs.
From page 31...
... They may attempt to control what they cannot control, have tantrums, cling to their parents, exhibit aggressive behavior, or withdraw from social interactions, Kupst said. Thus, she said the need for psychosocial support varies greatly among pediatric patients, and interventions should be targeted to the needs of individual patients.
From page 32...
... Such peer reports tend to be reliable and predictable of occupational and social success, according to Noll. Although he expected pediatric cancer survivors would be isolated and victimized, have fewer friends, and be less well liked, he did not find evidence for that, except for those who had brain tumors.
From page 33...
... Psychosocial Needs of Families Pizzo stressed that pediatric cancer "is truly a family event of extraordinary proportions." Paul Jacobsen, associate center director in the Division of Population Science at the H Lee Moffitt Cancer Center and Research Institute, added, "from a psychosocial perspective, the unit of care is the family." Several parents of pediatric cancer patients shared their perspectives about the impact of their child's cancer treatment on both the child and the family (see Box 4)
From page 34...
...    Jennifer Cullen's ­ aughter Alexandra was only 4 years old when d she underwent extensive treatment for a brain tumor, including having a hole drilled in her skull and a shunt put in to relieve intra­ ranial pressure. c Alexandra had such extensive mouth sores from high-dose chemotherapy that she had to be fed intravenously, and the treatment required around the-clock baths to wash off chemicals that can cause skin burns.
From page 35...
... "We think of childhood cancer as a physical disease, but it is really much more than that," Sardi-Brown stressed, adding, "It stuns me that there is a disparity in the psychosocial care and services offered in this country among hospitals. The predominant focus is always on medical care and drug development, yet any of us who has helped a child endure medical treatment knows that there are psychosocial issues just as complex and heartbreaking to manage, such as when your child tells you he feels ugly and that no one wants to be his friend because he is so different, or when he is in such excruciating pain that he is screaming uncontrollably, or worse, when he is telling you he knows he is dying."
From page 36...
... Joanne Wolfe added that for any child with a serious or life-threatening illness, throughout the course of that illness, "We need to embrace an individualized blending of care directed at the underlying illness, and at the physical, emotional, social, and spiritual needs of the child and family with continuous reevaluation and adjustment." Kupst pointed out the variability in how families cope with cancer, and said that the ability of the child to cope influences how well the parents cope and vice versa. "A number of studies report parents saying, ‘if my child is doing okay then I am doing okay,'" Kupst said, and she noted that if family support is lacking there is more reliance on social support and vice versa.
From page 37...
... . Posttraumatic stress is often high in parents of children with cancer and in pediatric cancer survivors, but can lessen over time.
From page 38...
... behavioral health specialist," Kazak said. But she noted that the lines distinguishing different levels of this pyramid are not rigid and there is movement among levels, suggesting the need to "screen, watch, and evaluate families." Kazak and others have developed a number of screening tools for psychosocial distress, with varying complexity.
From page 39...
... TABLE 1  Psychosocial Assessment Tool Domains Subscales Scoring/Interpretation Demographic Structure/resources Items are scored "positive" Diagnosis Family problems based on research literature and Family structure Social support clinical expertise Family resources Stress reactions Social support Child problems Total score = sum of scales Child knowledge of disease Sibling problems Maps onto PPPHM School enrollment Family beliefs Scores <1 universal, School placement >1 to <2 are targeted, Child problems >2 clinical Sibling problems Family problems Clinically relevant but unscored Family beliefs items are highlighted Stress responses Infants/young children Traumatic stress responses Suicidality NOTE: PPPHM = Pediatric Psychosocial Preventative Health Model. SOURCE: Kazak presentation, March 10, 2015.
From page 40...
... Studies of mothers of pediatric cancer patients found that the intervention was acceptable and more effective at reducing the mothers' distress than standard supportive therapy. The training was most effective for minority mothers, single mothers, and mothers with a low socioeconomic status (Sahler et al., 2005)
From page 41...
... Building Capacity for Psychosocial Care There was some discussion about who should be responsible for offering psychosocial care for pediatric cancer patients and their families, and who should financially support it. Kupst stressed that integrating psychosocial care in pediatric oncology requires collaborative multidisciplinary care with physicians, nurses, social workers, psychologists, and pastors.
From page 42...
... She asked which institutions should be responsible for providing psychosocial care -- children's hospitals or oncology practices? Kazak responded that "in developing standards, we are looking for how we can best fan this out into practice and we are not quite sure how to do that yet." Jacobsen added, "It may not be important where that care resides, but you need to have some process in place to know that the minimum levels of acceptable care are being delivered and there should be some way of measuring to see that it was done." Psychosocial Care Standards Several participants at the workshop voiced the need for evidence-based standards for psychosocial care in pediatric cancer.
From page 43...
... . The commission's new patient-centered standards of care should make a substantial impact on adult cancer care because it accredits approximately 1,500 cancer centers, which treat about 75 percent of Americans with cancer in the United States.
From page 44...
... Jacobsen added that the 2008 IOM report also recommended instituting quality oversight mechanisms for measuring and reporting on the quality of cancer care, and he was asked by the American Society of Clinical Oncology (ASCO) to develop indicators of the quality of psychosocial cancer care and ways to code for them in medical records (Jacobsen et al., 2011)
From page 45...
... With impetus and ongoing support by the Mattie Miracle Cancer Foundation, more than 40 professionals and advocates over the past 3 years have been attending congressional briefings and think-tank conferences and conducting other intensive work to develop psychosocial standards for care for children with cancer and their families, Kupst reported. This group is trying to publish and disseminate the standards as well as gather support for them from key oncology and advocacy organizations so they can be implemented successfully across all children's cancer centers.
From page 46...
... In addition, participants explored ways to expand use of pediatric PROs in cancer centers and clinical trials. In the adult cancer world, there is increasing recognition of the value of PROs that communicate the patient experience, said Lillian Sung, associate professor of hematology/oncology at The Hospital for Sick Children.
From page 47...
... . PROs in Clinical Research Reeve pointed out that 60 to 70 percent of children with cancer participate in clinical trials and such studies mandate collection of adverse event data by clinicians.
From page 48...
... She made several suggestions for strategies to effectively capture and incorporate PRO data in pediatric oncology research undertaken by COG. One was to identify trial characteristics that would mandate PRO incorporation into Phase II/III therapeutic clinical trials when seeking approval from NCI and COG early in the clinical trial development process.
From page 49...
... Sung suggested mandating that PRO endpoints that are included in clinical studies be analyzed and published, noting that often they are not. Among the 16 COG clinical trials she mentioned previously that included quality-of-life aims, only 7 successfully accrued enough patients to complete the data analyses.
From page 50...
... . She stressed that "the child's voice is crucial because without it we cannot know the full impact of our protocol-driven therapies and we cannot know the full impact of our nursing, medical, and psychosocial care." However, Hinds also noted that there are circumstances in which inviting the child
From page 51...
... . In the limited number of pediatric clinical trials in which PROs have been embedded, parent and child participation rates are higher, according to Hinds.
From page 52...
... . A third study embedded the PROMIS pediatric measures in a Phase I Sung suggested defining and validating a core group of pediatric PRO symptoms and functions that should be routinely measured.
From page 53...
... If we can identify subgroups early in treatment we will match our clinical care, whether it is supportive or other forms of care, to do better by them," Hinds said. She also pointed out that some patient-reported outcomes used in PROMIS might predict treatment response.
From page 54...
... Reaman noted that function is probably more quantifiable and is something that FDA has an interest in seeing reported in clinical trials. "I would explore functional assessments, which in the long run are as important, if not more important, with respect to quality of life," he said.
From page 55...
... He stressed that the system builds on the 2009 National Cancer Policy Forum workshop report that described the benefits of a rapid learning system for cancer care and delivery (IOM, 2010)
From page 56...
... "We need to think about opening pathways for early discussion across companies," she said. Tina Shih, professor of health economics and chief of the Section of Cancer Economics and Policy in the Department of Health Services Research at the University of Texas MD Anderson Cancer Center, stressed that the PROs collected in clinical studies often cannot be used for costeffectiveness analyses because of missing cost data and health utility9 information.
From page 57...
... However, systematic reviews indicate that differences are also frequently observed between parent and pediatric patient reports (Jardine et al., 2014; Upton et al., 2008)
From page 58...
... Researchers have linked specific cancer treatments to many of these late health complications of pediatric cancer, as indicated in Figure 3. For example, the steroids and Anthracyclines Heart failure Chest RadiaƟon R di Ɵ RadiaƟon AlkylaƟng agents Second Topoisomerase II inhibitors cancers Steroids RadiaƟon Osteonecrosis RadiaƟon Stroke FIGURE 3  Therapeutic exposures and adverse events.
From page 59...
... The substantial gap between mortality curves of childhood cancer survivors and that of the general population is also sobering (Oeffinger et al., 2006) , Bhatia noted, concluding, "The implications of a cure are not trivial." Chronic fatigue was a problematic long-term side effect of cancer treatment described by cancer survivor Melinda Marchiano and by Sandler, the parent of a cancer survivor.
From page 60...
... for different stress responses to their cancer treatments than others. "This might explain why some patients given the same chemotherapy regime are very troubled by it, while others are extremely resilient and have few symptoms," she said, adding, "We cannot just think about the symptoms and the self-report, but also need to connect them to the biology and use them to inform our interventions because the kinds of interventions we need to do for patients may vary depending on the mechanism by which they develop the symptoms."
From page 61...
... Sandler noted that his daughter, an adult survivor of pediatric leukemia, still has difficulties relating to her peer group. Lisa Schwartz, psychologist in the Division of Oncology at The Children's Hospital of Philadelphia and assistant professor of pediatrics, University of Pennsylvania School of Medicine, reported on two studies of pediatric cancer patients that found they often had fears and anxiety about the cancer returning a year after treatment (Hobbie et al., 2010; Wakefield et al., 2012)
From page 62...
... He noted two IOM reports on cancer survivorship (IOM, 2003a, 2005) that recommend monitoring survivors early on for recurrence, then continuing to monitor them for second or third cancers or other late effects "with an eye toward early diagnosis and intervention." COG also established guidelines for screening childhood cancer survivors that are currently being harmonized with similar guidelines developed by other countries, he reported (SIGN, 2013; SKION, 2010; UKCCSG, 2005)
From page 63...
... Several participants noted the value of a national registry of cancer survivors that enables such patient follow-up as well as research on longterm complications of cancer treatments. Bhatia noted that within COG, A ­ damson initiated Project Every Child, which is enrolling every child with cancer treated in COG trials into its registry along with collecting and storing the child's biospecimens.
From page 64...
... She said that young cancer survivors need interventions that bolster their motivation for follow-up care, and that patients, parents, and providers, including general practitioners, need better education about what that care involves. Many children and their parents find that when the children's treatment has ended and they transition into follow-up care, their lives do not return to normal because of lingering psychological or physical problems.
From page 65...
... Transitioning to Adult Follow-Up Care Several speakers presented evidence that most pediatric cancer ­survivors do not transition adequately to appropriate long-term follow-up care despite the great need for such care, in which they are monitored and treated for the various ailments they are likely to experience. Schwartz cited a study showing that fewer than 30 percent of adult childhood cancer survivors are receiving cancer-focused follow-up care (Nathan et al., 2009)
From page 66...
... . "Primary care providers are primarily responsible, but they are unfamiliar with the problems faced by the childhood cancer survivors," Bhatia said.
From page 67...
... When he did not adequately address the continual fatigue she was experiencing, her mother talked her into seeing a provider at a cancer survivorship program. Oeffinger noted that there are long-term follow-up programs at virtually every pediatric cancer institution now, so "If a patient is followed at a cancer center and they are not referred to a long-term follow-up program, that is not the standard of care." Bruce Waldholtz of the American Cancer Society suggested that there be prompts and drop-down menus in electronic medical records that indicate to the primary care physician that the patient he or she is seeing is a cancer survivor, and what special screening or care that patient requires because of the cancer history.
From page 68...
... But it is also critical to measure transition readiness when pediatric patients are transitioning to adult care, she said. That readiness does not just depend on acquisition of disease knowledge and skills, she added, "especially in oncology, where there is such an emotional and traumatic history for these patients and families and such a bond with the pediatric cancer center.
From page 69...
... "There have been moments when I have wondered, when I was lying in bed, if I had known what quality of life would be for cancer survivors, would I have fought so hard? Then there are moments when I get to see other childhood cancer patients and tell them ‘I made it through this and you can do it too.' I want other survivors to be able to experience life after cancer and to be able to pursue their passion with a new perspective and without a cost of the cure," she said.
From page 70...
... "Transition readiness is complex and patient motivation is key," Schwartz said. Schwartz is currently testing the use of a texting system to see if it can further improve the transition to follow-up cancer care within 1 year of treatment among cancer survivors aged 12 to 25.
From page 71...
... He expects the Affordable Care Act will increase the number of survivors with some level of insurance coverage, and it will prevent health insurers from denying coverage to survivors because of preexisting ­ conditions. However, most pediatric cancer survivors need more intensive screening for breast cancer, secondary cancers, and other conditions for which insurers may not provide sufficient coverage.
From page 72...
... This model enables us to allocate our resources to those patients who most need them, especially in an economically constrained environment," Oeffinger said. Many moderate to large cancer centers now have or are currently developing clinics focused on long-term follow-up and late effects, Kupst said, noting that at these specialized centers, pediatric cancer survivors are seen into their 40s or even longer.
From page 73...
... He suggested making greater use of advanced-practice nurses for this care. One participant said her daughter, a survivor of childhood cancer, had trouble getting referrals from her pediatric cancer care facility to cardiologists and endocrinologists knowledgeable about the long-term follow-up care needed for patients like her daughter.
From page 75...
... FIGURE 5  Risk-stratified shared care model for cancer survivors. In this model, cancer survivors were stratified based on their cancer treatment and thus their risk of developing late health complications.
From page 76...
... Ganz responded to this mother by saying, "One of the problems is we trust doctors and a lot of them don't know anything about this." She suggested getting second opinions and taking the time to find someone who is an expert in dealing with the rare late effects that pediatric cancer survivors experience. "We have to make sure that these survivors and their families are empowered to go somewhere where there is an expert who has seen [many]
From page 77...
... PEDIATRIC ONCOLOGY DATA COLLECTION AND REGISTRIES Several examples of registries and databases for pediatric cancer were described at the workshop. Participants discussed challenges in pediatric oncology data collection, including how to integrate and store data in a central database that can be used by researchers and practitioners, and ways to measure poverty and incorporate socioeconomic status in clinical trials and link it to outcomes.
From page 78...
... He suggested collaborations between electronic medical record vendors and the Office of the National Coordinator and other stakeholders to standardize what information is collected "so we have the ability to synergize our endpoints across different health care systems." Lori Minasian, deputy director of the NCI Division of Cancer Prevention, noted that the more data collected, the more difficult it might be to make sense of the data, "to separate the signal from the noise. How do we prioritize what we ask, how we ask it, and how do we integrate [the data]
From page 79...
... Proton radiation is a new type of radiation that clinicians are increasingly using to treat pediatric tumors because it can more precisely target the tumor with a dose of radiation. Because proton therapy reduces the dose of radiation to normal tissues by a factor of two to three, it theoretically should reduce the incidence and severity of late effects seen with radiation therapy.
From page 80...
... Yock stressed that pediatric oncology registries such as PPCR may offer a low-cost way to leverage more information out of existing trial datasets, such as those from COG trials. They might also incorporate PRO measures more easily than traditional treatment trials working with constrained resources.
From page 81...
... "Measurement of social determinants of health in pediatric oncology represents a significant gap in our research base and a potential opportunity for significant improvements in children's outcomes," she said. She noted there are limited data regarding social determinants of health and clinical outcomes in pediatric oncology, although poverty has been correlated with negative health outcomes in pediatric primary care and subspecialties, including higher rates of hospitalization, poor health, injury, and infectious disease (Bloom et al., 2011; Cook et al., 2004, 2008; IOM, 2014; Singh, 2010; Yoo et al., 2009)
From page 82...
... . Despite the link between poverty and health outcomes in children, there is no systematic collection of measures of poverty in pediatric cancer clinical trials, Bona noted.
From page 83...
... She suggested engaging in systematic and standardized collection of sociodemographic variables in clinical trials that can be linked directly to outcomes of interest. "This is essential if we are going to target and improve this potential driver of outcomes," she said, adding, "Integrating systematic screening for material hardship in the clinical setting can happen immediately, and it is an opportunity for targeted intervention for quality of life for families because regardless of its relationship with relapse or overall survival, material hardship in families of children being treated for cancer is certainly a source of suffering we can do something about." Just a few questions need to be added to questionnaires to ascertain the various forms of material hardship, as indicated in Table 2.
From page 84...
... Household Food Security Scale --  ood did not last, didn't have money to buy more F --  ould not afford balanced meals C --  dults skipped meals or cut size of meals because not A enough money for food --  te less than felt you should because not enough money A for food o  How often did this happen -- nearly every month, some months but not every month, or in only 1 or 2 months --  ungry but did not eat because not enough money for H food Energy insecurity • Receipt of utility shutoff letter for nonpayment • Actual utility shutoff for nonpayment • Days home was not heated or cooled due to finances • Use of cooking stove to heat home SOURCE: Bona presentation, March 10, 2015. Bona also made some policy suggestions based on her findings, including increasing the eligibility of families experiencing material hardship to access existing governmental support programs and family leave with pay.
From page 85...
... I actually think the time to address social determinants is from conception of the child rather than at the time of diagnosis of the disease." WRAP-UP At the end of the workshop, Brawley provided his perspective on the key messages, such as the importance of providing a means for children and families to report symptoms, including psychosocial distress, and to have
From page 86...
... . She also emphasized that "we need less variability across our centers, greater uniformity, and greater access to measures to both continue monitoring and improve our care outcomes." The next key steps are to prioritize and disseminate what we know, and to continue refining pediatric cancer care based on novel work, Wolfe said.
From page 87...
... 2009. Family psychosocial risk, distress, and service utilization in pediatric cancer: Predictive validity of the psychosocial assessment tool.
From page 88...
... Presented at the IOM Workshop on Comprehensive Cancer Care for Children and Their Families, Washington, DC. http://www.iom.edu/~/media/Files/Activity%20 Files/Disease/NCPF/2015-MAR-09/Bona.pdf (accessed May 29, 2015)
From page 89...
... 2011. Association between a name change from palliative to supportive care and the timing of patient referrals at a comprehensive cancer center.
From page 90...
... 2013. The cancer psychosocial care matrix: A community-derived evaluative tool for designing quality psychosocial cancer care delivery.
From page 91...
... 2003a. Childhood cancer survivorship: Improving care and quality of life.
From page 92...
... 2010. A foundation for evidence-driven practice: A rapid learning system for cancer care: Workshop summary.
From page 93...
... 2011. Identifying determinants of quality of life of children with cancer and childhood cancer survivors: A systematic review.
From page 94...
... 2011. Family adjustment to childhood cancer: A systematic review.
From page 95...
... 2013. Recommendations for breast cancer surveillance for female survivors of childhood, adolescent, and young adult cancer given chest radiation: A report from the International Late Effects of Childhood Cancer Guideline Harmonization Group.
From page 96...
... 2009. Breast cancer surveillance practices among women previously treated with chest radiation for a childhood cancer.
From page 97...
... 2013. General practitioner involvement in follow-up of childhood cancer survivors: A systematic review.
From page 98...
... 2010. The psychosocial impact of completing childhood cancer treatment: A systematic review of the literature.
From page 99...
... 2012. Family information needs at childhood cancer treatment completion.
From page 100...
... 2009. Material hardship and the physical health of school-aged children in low-income households.


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