Childhood Cancer Survivorship Improving Care and Quality of Life (2003) / Chapter Skim
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5. Delivering Survivorship Care
5. Delivering Survivorship Care
Pages 90-127
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From page 90... ...
Each year there are an estimated 605,600 cancer-related ambulatory care visits and 20,590 hospital discharges among children (Table 5.1~. These estimates from large national surveys and administrative data sets pertain to the entire spectrum of cancer care, from diagnosis and treatment to end-of-life care.
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From page 91... ...
Such centers use a team approach involving a variety of specialists pediatric oncologists, surgeons, radiation oncologists, pediatric oncology nurses, nurse practitioners, psychologists, social workers, child life specialists, nutritionists, rehabilitation and physical therapists, and educators who can support and educate the entire family. In recognition of improved outcomes associated with such specialized care, the American Academy of Pediatrics (AAP)
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From page 92... ...
1,040 6.8 (1.7) children and adolescents with newly diagnosed or recurrent malignancies receive their treatment in a pediatric cancer center (American Academy of Pediatrics, 1997~.
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From page 93... ...
(June McAtee, APOSW Membership Chair, personal communication to Maria Hewitt, March 21, 2003~. Pediatric cancer care is usually delivered through academic centers involved in research (Wittes, 2003~.
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From page 94... ...
. It develops and coordinates cancer clinical trials conducted within its 235 member institutions, which include cancer centers of all major universities and teaching hospitals throughout the United States and Canada, as well as sites in Europe and Australia (http://www.nccf.org/COG/index.asp, accessed March 15, 2003~.
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From page 95... ...
tient clinic should ensure the long-term follow-up of successfully treated patients and those with lifelong chronic disorders" (Children's Oncology Group, 2001~. The COG membership requirements are drawn from the general criteria and guidelines for pediatric cancer centers established by the Section on Hematology/Oncology of the American Academy of Pediatrics and the American Society of Pediatric Hematology/Oncology (Children's Oncology Group, 2001)
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From page 96... ...
96 CHILDHO OD CANCER SUR VIVORSHIP · Educating and counseling survivors regarding the specific risks to which they are susceptible and guidance on self-monitoring for signs of late effects. · Applying preventive approaches known to be effective for the general population, including encouragement of abstinence from tobacco, limited exposure to alcohol, sun protection, physical activity, maintenance of a healthy weight, consumption of fruits and vegetables.
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From page 97... ...
. · Providing psychosocial support services to survivors and their fami lies.
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From page 98... ...
Physical examination Audiogram History (primary versus secondary dysfunction) Gonadal function testingb Thyroid function testinga Electrocardiogram; echocardiogram; radionuclide angiography Angiography; Doppler pulses Spine radiography; evaluate again during adolescent growth spurt Orthopedist consultation Orthopedist consultation; bone radiography; plastic surgeon consultation Bone scan Serum estradiol level; Ca, P Orthopedist consultation; physical therapist consultation Plastic surgeon consultation Dentist, oral surgeon consultation CT or MRI scan of head; special education classes Cerebrospinal fluid basic myelin protein; neurologist consultation Neurologist consultation Otorhinolaryngologist consultation; audiologist consultation Endocrinologist consultation Obstetrician or gynecologist consultation Endocrinologist consultation Cardiologist consultation Vascular surgeon Chest radiography Lung biopsy Pulmonary function tests Pulmonologist consultation
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From page 99... ...
More extensive practical advice to physicians on providing follow-up care for childhood cancer survivors is available (Schwartz et al., 1994) and efforts are underway by the COG Late Effects Committee to create practice guidelines for follow-up care (Bhatia, 20021.
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From page 101... ...
The website of the Association of Cancer Online Resources (http://www.acor.org/ped-onc/treatment/surclinics.htmI, accessed August 17, 2001) listed 28 follow-up programs that were considered comprehensive.1 To learn more about these programs, in June and July 2001, Board staff interviewed program coordinators associated with 16 of the 28 programs listed on the website.2 1 Comprehensive programs were those that had a dedicated time and place for the clinic, met at least twice a month, were staffed by a doctor with experience in the late effects after treatment for childhood cancer, had a nurse coordinator, provided state-of-the-art screening for individual's risk of late effects, provided referrals to appropriate specialists, and provided wellness education (www.acor.org/ped-onc/treatment/surclinics.~7tml, accessed March 25, 2003)
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From page 102... ...
A few other programs are available to address specific late effects or concerns of survivors of adult cancers (e.g., lymphedema among breast cancer survivors, sexuality, fatigue)
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From page 103... ...
In fact, many services garner no reimbursement for surveillance programs, including those provided by social workers, education specialists, genetic counselors, nutritionists, or dentists. Consequently, hospitals often rely on grant support or philanthropic donations to partially subsidize the costs of providing long-term follow-up care.
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From page 104... ...
This is consistent with preliminary results of a Robert Wood Johnson study of barriers to care among childhood cancer survivors where only 19 percent of 441 5-year survivors reported that they had been given a written summary of their treatment and could easily find it (Kevin Oeffinger, personal communication to Maria Hewitt, January 8, 2002~. Many survivors and families have anecdotally reported that they were not informed of late effects or of the need for follow-up (Keene, 2002~.
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From page 105... ...
In some cases, the clinical, psychological, educational, and other supportive interventions needed by child and adult survivors of HIV/ AIDS, brain injury, hemophilia, and other conditions may also be appropriate for childhood cancer survivors. Children with special health care needs are those "who have, or are at increased risk for, chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally" according to the U.S.
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From page 106... ...
The medical home assists in the early identification of special health care needs; provides ongoing primary care; and coordinates with a broad range of other specialty, ancillary, and related services.
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From page 107... ...
Acute care insurance policies often cover a limited number of supportive services such as home care, physical therapy, or occupational therapy services following an acute episode of illness, but generally this coverage does not extend beyond certain time limits. Supportive services needed to maintain function after an acute episode has resolved are usually excluded from health insurance policies.
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From page 108... ...
In part, the answer to these questions depends on an understanding of the unique characteristics of the pediatric cancer care system and the distinct follow-up care needs among survivors of childhood cancer. An argument for specialized follow-up programs within cancer centers can be made on the basis of the multidiciplinary expertise represented in such institutions and their familiarity with late effects.
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From page 109... ...
When follow-up care is provided at a cancer center, is it necessary to have a separate clinic apart from the one where children come to be treated for their cancer? Specialized clinics were, in fact, first developed to address the limitations of follow-up within the oncology outpatient clinic.
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From page 110... ...
Some programs, however, favor holding follow-up in the acute care setting because it facilitates the establishment of mentoring programs between survivors and newly diagnosed patients. Since late effects may not emerge until several years after treatment is completed, it is important to maintain active follow-up of childhood cancer survivors as they transition through adolescence and into adulthood (MacLean et al., 1996; Oeffinger et al., 1998~.
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From page 111... ...
· provide a range of direct services to survivors to identify, prevent, treat, and ameliorate late effects, · bridge the realms of primary and specialty health care with educatlon and outreach, · coordinate medical care with educational and occupational services, · conduct research to better understand late effects and their prevenThese functions of an ideal follow-up system of care for survivors of childhood cancer are described in Box 5.5. Implicit in the "ideal" is the goal to improve outcomes of survivors of childhood cancer.
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From page 118... ...
8 CHILDHO OD CANCER SUR VIVORSHIP The Late Effects Committee of the United Kingdom Children's Cancer Study Group has recently suggested a tiered approach with postal or telephone contacts made with those at lowest risk of late effects, follow-up by a nurse or primary care doctor for those at moderate risk, and a medically supervised late effects clinic for those with high risk of late effects (Wallace et al., 2001 ) (Table 5.3~.
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From page 119... ...
Upon completion of primary therapy, the treating cancer center would provide the national center with a summary of treatment and complications. Care coordinators would develop a survivor-specific plan of action, assess health care resources in the survivor's environment, and orchestrate care with appropriate health care providers located near the survivor.
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From page 120... ...
A centralized database will link childhood treatment data to outcomes using standardized data collection procedures. Some sites of care will be in a pediatric setting, while others will be incorporated in internal medicine programs or adult-based cancer centers.
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From page 121... ...
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From page 122... ...
Statewide Comprehensive Cancer Control ships, Opportunities in the United States to develop regional approaches to care for childhood cancer survivors could be facilitated by the Centers for Disease Control and Prevention (CDC) efforts to build the capacities of states and, in turn, their local partners to both develop and implement comprehensive cancer control plans.
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From page 123... ...
. I\\\ TENNESSEE — LA ~ _ ~~: _ ,,~....,~f Outdated or N 0 P lan U pdabng or Creating Ned Plan FIGURE 5.5 Comprehensive cancer control plans, 2001.
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From page 124... ...
Comprehensive state plans have potential, but to date, very few have addressed issues related to pediatric cancer or to survivorship issues. SUMMARY AND CONCLUSIONS Fifty to sixty percent of children with cancer are initially treated in specialized cancer centers, but somewhat fewer an estimated 40-45 percent are receiving follow-up care in specialized clinics.
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From page 125... ...
Children's Oncology Group Late Effects Committtee. National Cancer Policy Board Meeting.
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From page 126... ...
. National Ambulatory Medical Care Survey and National Hospital Ambulatory Medical Care Survey, 1995-1999; Healthcare Cost and Utilization Project, 1997; special tabulations NCPB staff, 2003.
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From page 127... ...
2002. Care of the Cancer Survivor: Role and Availability of Specialized Clinic Services: National Cancer Policy Board Commissioned Paper (www.iom.edu/ncpb)
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