Childhood Cancer Survivorship Improving Care and Quality of Life (2003) / Chapter Skim
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8. Research Issues
8. Research Issues
Pages 166-187
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From page 166... ...
This chapter reviews types of research of relevance to cancer survivorship, describes major ongoing survivorship research initiatives, and summarizes the state of survivorship research and levels of support. The chapter concludes with a listing of prioritized areas of research identified by the Board.
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From page 167... ...
Some of the early findings on cognitive late effects among children with leukemia emerged from follow-up studies of children enrolled in clinical trials of the Cancer and Leukemia Group B Cooperative Group (CALGB)
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From page 168... ...
Organized consortia have been able to successfully address selected topics relating to childhood cancer survivorship. The Late Effects Study Group (LESG)
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From page 169... ...
These materials will be used to evaluate the role of genetics in the occurrence of cancer and longterm adverse outcomes among survivors. A likely outcome of a large cohort study such as the CCSS is the early identification of emerging or changing patterns of late effects.
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From page 170... ...
Adverse events recognized in smaller studies can be confirmed and further defined in existing cohort studies and the information used to develop new protocols that seek to minimize such complications. Some late effects may be observed among long-term survivors following exposures to therapies that are no longer in use.
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From page 171... ...
Research to Modify or Improve Cancer Treatment to Minimize Late Effects Once late effects have been recognized, clinical trials can be designed to test modifications of treatments that are likely to reduce their occurrence. A clinical trial involving children with localized lymphomas demonstrated that radiation therapy can be safely omitted without jeopardizing high cure rates (Link et al., 1997~.
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From page 173... ...
STATUS OF CHILDHOOD SURVIVORSHIP RESEARCH This section first describes publication trends in childhood cancer survivorship and then summarizes federal and private support for such research. Publication Trends The evaluation of trends in research publications is one way to assess the level of activity within a discipline.
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From page 174... ...
The term "survivors," the MESH heading used to identify citations, refers to "per180 160 140 (n o 120~ 100o to 80E 6040 ~ 20 ~ o 170 117~ . 101 453 t34 ~ 1993 1995 1997 Year 1999 2001 FIGURE 8.1 PubMed citations for childhood cancer survivorship research, 19932001.
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From page 175... ...
Percentages were calculated as the numbre of childhood cancer survivorship-related citations (as described in Figure 8.1) divided by the total number of citations categorized under the MESH terms "neoplasms" and either "pediatrics" or "child." Only articles published in English are counted.
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From page 176... ...
37.2 ......................................... Of ~ i.= 1993 1995 1997 Year 1 999 2001 FIGURE 8.3 PubMed citations for childhood cancer survivorship research as a percentage of all cancer survivorship-related research, 1993-2001.
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From page 177... ...
. Although these organizations are not the only sponsors of research on cancer survivorship, they represent the major funding sources for such research.
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From page 178... ...
, all of which contain language relevant to cancer Survivorship research, designed to stimulate and support research (Julia Rowland, NCI Office of Cancer Survivorship, personal communication to Maria Hewitt, Tune 19, 2002~. NCI-supported research in childhood Survivorship is shown in Box 8.3 along with other NIH-supported Survivorship research.
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From page 179... ...
expand the scientific base for understanding the biologic and physiologic mechanisms in the adverse late effects of current and new cancer treatments. Specific initiatives identified within each of these objectives relate to cancer survivors of all ages, including survivors of childhood cancer.
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From page 180... ...
, by Category of SPRANS Grant Category Funding level ( $ in millions ) Total · MCH research · MCH training · Genetic disease testing, counseling, and information dissemination · Hemophilia diagnostic and treatment centers · Other special projects to improve maternal and child health $109.14 8.53 41.83 9.20 5.35 44.24 SOURCE: Health Resources and Services Administration, 2000b.
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From page 181... ...
. Private Research Support This section of the report describes the research activities of two private national organizations that support cancer research relevant to survivors of childhood cancer, the American Cancer Society and the Lance Armstrong Foundation.
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From page 182... ...
. Oulslana · Integrating pathways between the medical home and early intervention system using a parent navigation system California · Developing of a seamless, integrated system of care Kansas · Building systems for children with special health care needs in child care settings Minnesota · Developing transition from school to work services for youth with disabilities New York · Developing guidelines and outcome indicators for asthma, spine bifida, and sickle cell disease for managed care providers Oklahoma · Developing systems for children with special health needs and their families Oregon · Promoting partnerships between families of children with special health care needs and managed care plans Vermont · Implementing changes in the education and practice of families and professionals Hemophilia and sickle cell disease projects Alabama · Development of a statewide regionalized pediatric care system for individuals with hemoglobinopathies · Ensuring that a full range of services exist for adolescent and young adult patients with congenital bleeding disorders · Providing for transition to adult care for adolescent sickle cell patients North Carolina · Providing comprehensive services for individuals with hemophilia and their families Texas · Providing comprehensive services, including medical and psychosocial services, for persons with hemophilia and related bleeding disorders, and for all complications of the disease Traumatic brain injury (TBI)
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From page 183... ...
The extramural research program focuses primarily on peer-reviewed projects initiated by beginning investigators working in leading medical and scientific institutions. A review of the ACS portfolio of extramural grants suggests that a total of $1.5 million was spent on four research projects related to pediatric cancer survivorship (Cheri Richard, Research Program Analyst, American Cancer Society, personal communication to Maria Hewitt, April 5, 2002~: · The Impact of Medical Treatment on the Quality of Life of Childhood Cancer Survivors: A Case Controlled Study · Validation Testing of a New Brain-specific Measure for Pediatric Cancer Patients and Survivors · Quality of Life in Children Who Survived Neuroblastoma · Health Profiles in Adolescent Childhood Cancer Survivors Lance Armstrong Foundation Founded in 1997 by Lance Armstrong, the cancer survivor and fourtime winner of the Tour de France bicycle race, the foundation bearing his name focuses on enhancing the quality of survival through support of survivor resources and support, groundbreaking survivorship programs, national advocacy initiatives, and scientific and clinical research grants (www.~f.org, accessed Tune 12, 2002~.
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From page 184... ...
The foundations program and community care grants included: and · Life After Cancer Program at Cook Children's Medical Center, · Living Well After Cancer Program at the University of Pennsylvania, · Wonders and Worries, Inc., a non-profit organization dedicated to providing psychological support for children, youth, and families coping with chronic life threatening illness. RESEARCH PRIORITIES Several priority areas for research emerged from the Board's review of childhood cancer survivorship research activities: Assess the prevalence and etiology of late effects Support prospective longitudinal studies Develop a national childhood cancer registry from which cohorts could be selected (e.g., through the cooperation of existing populationbased registries)
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From page 185... ...
Further improve quality of care to ameliorate the consequences of late effects on individuals and families · Identify appropriate components of follow-up care through systematic evidence reviews, health services research, and consultation with patients and their families · Identify optimal methods of clelivering follow-up care through clemonstration projects · Develop screening tools to help determine who might benefit from psychosocial and other support services. frequency, and cluration of interventions Determine the optimal timing, · Identify moclels to facilitate reintegration into school or work following cancer treatment · Assess the unique needs of meclically unclerserveci groups (minority populations)
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From page 186... ...
Several ongoing research activities will answer many outstanding questions about late effects among childhood cancer survivors. The Childhood Cancer Survivor Study, in particular, will provide many opportunities for researchers.
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From page 187... ...
1999. NCI Press Release: Cancer Survivorship.
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