From Cancer Patient to Cancer Survivor Lost in Transition (2006) / Chapter Skim
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4 Delivering Cancer Survivorship Care
4 Delivering Cancer Survivorship Care
Pages 187-321
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cancer care infrastructure is then described, highlighting existing programs to meet the needs of cancer survivors. Finally, the chapter puts forward steps that could be taken to implement the envisioned cancer survivorship system of care.
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A decade ago, the National Coalition for Cancer Survivorship promulgated 12 principles that it believed were imperatives for quality cancer care (NCCS, 1996)
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The need for specific services will vary from survivor to survivor because of the heterogeneity of cancer and late effects. Survivors of earlystage cancer whose treatment was limited to surgery may require minimal follow-up care.
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How Should Survivorship Care Be Provided? Different models can be used to deliver optimal cancer survivorship care (see discussion below)
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The health care system should make informa tion available to patients and their families that allows them to make informed decisions when selecting a health plan, hospital, or clinical practice, or when choosing among alternative treatments. This should include information describing the system's performance on safety, evidence-based practice, and patient satis faction.
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as they are in treating the cancer itself. BARRIERS TO OPTIMAL CANCER SURVIVORSHIP CARE Cancer survivors now generally receive some kind of follow-up, either from their cancer care specialist or primary care physician, but the focus of care has usually been on surveillance for recurrence and second cancers, not on the other key elements of care identified above.
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This study focused on the care experience of Medicare beneficiaries who had survived 5 years past their diagnosis of colorectal cancer. In contrast to the findings in this study, breast cancer survivors received more preventive services (i.e., influenza vaccination, blood lipid testing, cervical and colon cancer screening, bone densitometry for osteoporosis)
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Relatively little is known of cancer survivors' desires and perspectives regarding follow-up. Interviews conducted in England with breast cancer survivors on their views of routine follow-up indicated that women wanted, but were not receiving, continuity of care and an unrushed consultation (Adewuyi-Dalton et al., 1998)
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. The cancer care coordination project provides Medicare beneficiaries in South Florida with an oncology nurse advocate to help them understand their disease and better manage the side effects and symptoms of cancer and its treatment (Quality Oncology Inc., 2003)
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. · Breast cancer survivors often do not recall discussing the reproductive health impact of their treatment, and many report that their concerns are not adequately addressed (Partridge et al., 2004; Duffy et al., 2005)
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. When cancer survivors seek follow-up care, all components of survivorship care may not be addressed.
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. Cancer survivors expressed dissatisfaction with their oncologist's provision of support in dealing with the secondary aspects of cancer, such as depression, fear of recurrence, chronic pain, ongoing health challenges, infertility, sexual dysfunction, difficulty with relationships, and financial or job insecurity.
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. In summary, there is a limited amount of research regarding cancer survivors' expectations and experience with their care following primary treatment.
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Communication issues are also a major challenge to those providing and coordinating survivorship care because individuals with cancer often have multiple providers at different sites of care. Compounding these problems are concerns about the capacity of the primary care and oncology care systems to accommodate the followup needs of the large and growing population of cancer survivors.
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In addition to their lack to education and training regarding cancer survivorship, health care providers report being ill-equipped and -trained to manage the care of patients with chronic conditions. According to one survey conducted in 2000 and 2001, practicing physicians reported that their training did not adequately prepare them to coordinate in-home and community services (66 percent)
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Some potential quality of care measures relevant to cancer survivorship are shown in Box 4-2. Such measures, if found to be clinically important, evidence based, practical to measure, and meaningful to providers and patients, could facilitate improvements in care.
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· Assessment and management of pain · When appropriate, referral to enterostomal care · When appropriate, referral for lymphedema management · When appropriate, assessment of sexual function and referral to sexuality counseling · When appropriate, referral to genetic counseling · Recommendation of exercise for fatigue · Smoking cessation counseling, if necessary Survivor assessments of care · Ratings by survivors of their satisfaction with care, coordination of care, and quality of care When quality measures for survivorship care are developed and then adopted by health systems, office supports such as computerized reminder systems, the involvement of nonphysician providers in care, and standing orders for screening tests that have been shown to be effective in promoting preventive health services will likely also prove useful in prompting the delivery of appropriate survivorship care (IOM, 2003b)
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. There are a few examples of technological innovation to improve communication between primary care providers and cancer specialists.
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In Europe, a few systems are already in place. One hospital in Italy has, with cancer patients' consent, made information about cancer care available to each patient's primary care physician through a protected website (Personal communication, F
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. Such a summary and cancer survivorship care plan should also be provided to survivors so they can be alerted to possible late effects, engage in recommended health promotion activities, and actively seek necessary care.
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. With demographic trends predicting a surge in new cancer patients in need of follow-up care, there is an imperative to assess alternative models that will deliver needed services to cancer survivors.
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Relatively little is known regarding cancer survivors' preferences for care, but there is a growing recognition of the need for flexible options for survivors who may have different needs and circumstances (Koinberg et al., 2002)
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bRadiologists were excluded from the sample of office-based physicians. cClinics providing chemotherapy, radiotherapy, physical medicine, and rehabilitation were excluded from the sample of hospital outpatient departments.
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. For their part, primary care physicians may not have been informed by care specialists of the important role they have to play in the ongoing care of cancer survivors.
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U.S. primary care physicians are playing a significant role in cancer care, and nearly half of cancer-related ambulatory visits are characterized as shared care, but with available information it is not clear what the relative roles of specialists and primary care providers are in these settings.
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. Creative strategies for harnessing the talents of American nurses in cancer survivorship have been proposed (Leigh, 1998; Pelusi, 2001)
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, and the potential preference on the part of some cancer patients to receiving follow-up care from physicians. Survivorship Follow-up Clinics A few academic centers have developed cancer survivorship clinics that concentrate needed expertise to provide follow-up care in one location.
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M.D. Anderson Cancer Center: · Patient population: Accepts survivors with all Life After Cancer Care cancer diagnoses, although most are breast cancer survivors who are cancer free and are no No external support longer seen by their oncologist.
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· Clinical focus: Clinical surveillance and follow up for testicular cancer patients and adult survivors of childhood cancers. Also provides a consultative and research service for breast cancer survivors, which involves surveying breast cancer survivors by mail to identify issues affecting quality of life, and then communicating surveillance and treatment suggestions to their oncologist.
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Most programs picked up patients after they had completed their care from their treating oncologist, generally when they were 2 years removed from the completion of therapy and/or 3 to 5 years from diagnosis, and disease free. Although these comprehensive follow-up programs are addressing the concerns of cancer survivors and their families, there have been no evaluations of their effectiveness or value.
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. The Lance Armstrong Foundation Cancer Survivorship Center, which will be located in the patient library at the Nevada Cancer Institute, will provide educational programs, translation and interpretation services, navigation services, and general support to survivors and their families.
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These specialized clinics are available to individuals with and without cancer and so may be more economically viable. There is virtually no information on the cost-effectiveness and acceptability to patients and providers of either generalized cancer survivorship clinics or the more specialized cancer-related ancillary clinics.
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Examples of the delivery of certain cancer survivorship services are described in Appendix 4D (genetic counseling, rehabilitation, and psychosocial services)
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Comprehensive breast care programs have been developed over the past decade to put under one roof the many providers and services that an individual with breast cancer might need to make breast care simpler and to provide "one-stop" care. Typically, these programs employ physician specialists, clinical nurse specialists, social workers, psychologists, and other providers to meet the range of breast cancer needs throughout diagnosis, treatment, and follow-up.
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Cancer survivorship is a distinct phase of care, but it is difficult to know where the 10 million cancer survivors are along the cancer care
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Survivorship Services Within Cancer Centers With the limited number of dedicated cancer survivorship programs and large and growing population of cancer survivors, the committee attempted to assess the availability and scope of survivor-oriented services within cancer centers. Information was sought for the following sites of care: · National Cancer Institute-designated Comprehensive Cancer Centers · Cancer programs approved by the American College of Surgeons' Commission on Cancer · Community cancer centers that are members of the Association of Community Cancer Centers NCI-Designated Comprehensive Cancer Centers The National Cancer Institute (NCI)
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. Although NCI grants are used solely to support the research infrastructure at cancer centers, all designated cancer centers also provide clinical care and service for cancer patients.
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. services for cancer survivors (Table 4-8)
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Some of the CoC standards pertain to services of potential benefit to cancer survivors (Box 4-3)
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Unclear also is the level of training of staff regarding issues related to cancer survivorship. Some services may be limited to patients on active treatment, leaving a void for long-term survivors.
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dA support group sponsored by the American Cancer Society for men who are prostate cancer survivors. eUs TOO provides information, local support groups, counseling, and educational meetings to assist men with prostate cancer as they make decisions about their treatment and continued quality of life.
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The availability of lymphedema services and support groups appears to be somewhat lower in these ACCC-member cancer centers than in the NCIdesignated comprehensive cancer centers (Table 4-8) .14 With the information at hand, it is difficult to gauge the availability of cancer survivorship clinical and supportive services in cancer centers.
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Sexuality counseling and dedicated fatigue management appear to be rarely available. To better understand the adequacy of cancer survivorship clinical and support services, an in-depth survey from the perspectives of both survivors and providers of oncology and primary care is needed.
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Professionals experienced in rehabilitation are best suited to meet the needs of cancer patients. The rehabilitation team includes, but is not limited to: · Oncology nursing services · Psychosocial services · Nutritional support services · Pharmacy services · Pastoral care services · Physical, occupational, and recreational therapy services · Speech pathology services · Comprehensive, multidisciplinary lymphedema services · Enterostomal therapy services · A discharge planner to address home care and community and/or extended care facility services and needs · Qualified volunteers to provide support and advocacy for cancer patients and their families · Other complementary services, such as music/art therapy, relaxation, mas sage, and others, may be used in conjunction with rehabilitation disciplines Each health care discipline is available on staff or by consult to facilitate conti nuity of care for rehabilitation services.
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. This section of the chapter highlights selected programs that provide services nationally, those offered by the American Cancer Society and the Wellness Community, selected programs that focus on the needs of Hispanic and African-American cancer survivors, and support available by telephone or online.
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. American Cancer Society Programs The American Cancer Society provides extensive information on cancer patient support and special topics in survivorship issues and sponsors several programs for cancer survivors (see Table 4-11; Box 4-5)
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Its online resources include webcasts, relaxation exercises, cancer-specific educational materials, continuing education for oncology nurses, and online support groups hosted through "The Virtual Wellness Community" (The Wellness Community, 2004a)
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· Information and education http://www.acor.org Available nationwide via the Internet Gilda's Club · Support groups http://www.gildasclub.org · Education Available in 18 centers nationwide, with 7 centers in development Cancer Survivors Project · Online education http://www.cancersurvivorsproject.org Available nationwide via the Internet
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DELIVERING CANCER SURVIVORSHIP CARE 235 Content of Services Eligibility · Emotional support and encouragement Survivors, family, and loved · Psychological counseling from social worker ones · Teleconferences for cancer information · Group peer support via telephone or Internet · Financial advice and assistance · Diagnosis, treatment, side effects of treatment Survivors and family · Emotions and self-esteem, cancer and intimacy · Communication skills · Community resources, financial concerns · Pain management · Psychosocial interventions: emotional support, Survivors and family coping strategies, relaxation/visualization training · Information and education · Exercise techniques and nutritional guidance · Emotional support and encouragement from Survivors cancer survivor · E-mail listservs, networks, and chat rooms Survivors and family monitored by health care professionals; survivorship-related networks include long-term survivorship, fertility, sexuality, fatigue, osteoporosis, and financial issues · Cancer information · Emotional support for survivors and families Survivors, family, and · Support program specifically for friends post-treatment survivors · Education: topics include stress reduction, nutrition, managing pain, meditation, exercise, yoga, etc. · Information on physiological and psychosocial Survivors, family, and late effects, preventive care, and long-term follow-up friends · Survivor stories Continued
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Prostate Cancer Man to Man · Group or one-on-one peer support ACS and education http://www.cancer.org Services and activities vary depending on location Us TOO · Support groups http://www.ustoo.org · Online information and mailing lists Support groups available nationwide, with more than 330 chapters worldwide Colon Cancer Colon Cancer Alliance · Online support groups http://www.ccalliance.org · One-on-one peer support · Information and education Available nationwide through the Internet
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· Emotional support, coping strategies Breast cancer survivors and · Group psychotherapy family · Emotional support from cancer survivors Prostate cancer survivors · Information and education · Support groups for patients and survivors Prostate cancer survivors · Us TOO Partners support groups for women whose and partners partners or family members have prostate cancer · Prostate Pointers website with 13 focused listservs on topics such as intimacy and sexuality, treatment modalities, and spirituality · Emotional support Colorectal cancer survivors · Educational materials on quality of life and family · Survivor stories Continued
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Anderson Cancer Center, Catholic University, and the National Coalition for Cancer Survivorship.
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. The only national African-American breast cancer survivors' organization
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. PHEN is establishing "brotherhoods" of prostate cancer survivors across the country that will focus on educating men about prostate cancer and mentoring and counseling those newly diagnosed with the disease, but will also provide support to each other as survivors.
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CancerCare has recently teamed with the Lance Armstrong Foundation to create a counseling program specifically for cancer survivors that includes an online forum for survivors and individualized counseling (CancerCare, 2005b)
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. Statewide Comprehensive Cancer Control Opportunities in the United States to develop regional approaches to care for cancer survivors could be facilitated by the Centers for Disease Control and Prevention's (CDC's)
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· Cancer Survivors Network, American Cancer Society (ACS, 2005b) · Life After Cancer Care, M.D.
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This action plan and the strategies outlined within the plan shown in Box 4-7 will serve as a guide to states as they expand their comprehensive cancer control plans to include survivorship. As part of a pilot project, CDC is analyzing four organizations' survivorship-related activities that are national in scope (i.e., those of the American Cancer Society, CancerCare, the Lance Armstrong Foundation, and the National Coalition for Cancer Survivorship)
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Comprehensive cancer control plans have been oriented to primary and secondary prevention activities such as tobacco control and cancer screening; however, states have recently been adding some survivorship elements to their plans (True, 2004; Texas Cancer Council, 2005)
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6. Educate health care providers about cancer survivorship issues from diag nosis through long-term treatment effects and end-of-life care.
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5. Establish clinical practice guidelines for each stage of cancer survivorship.
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· Establish new and expand existing long-term survivorship clinics in Mary land for both childhood and adult cancer survivors. These clinics should be de signed to follow survivors after treatment and to provide them with comprehensive care to address the unique needs of cancer survivors.
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The chronic disease model of care is emerging in the United States, but has not been applied in the context of cancer survivorship. Defining Quality Health Care for Cancer Survivors The National Cancer Policy Board, in its 1999 report, Ensuring Quality Cancer Care, recommended that systems of care "measure and monitor the quality of care using a core set of quality measures" and specified some of the attributes and applications of such measures (Box 4-9)
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Given the frequency of other common and treatable symptoms such as fatigue and sexual dysfunction, other measures of survivorship care quality could likely be formulated with available evidence that would be broadly applicable to cancer survivors. Recommendation 4: Quality of survivorship care measures should be developed through public/private partnerships and quality assurance programs implemented by health systems to monitor and improve the care that all survivors receive.
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preparing the workforce to better serve patients in a world of expanding knowledge and rapid change.16 Barriers facing cancer survivors and their providers in achieving quality survivorship care include: a fragmented and poorly coordinated cancer care system; the absence of a locus of responsibility for follow-up care; poor mechanisms for communication; a lack of guidance on the specific tests, examinations, and advice that make up survivorship care; inadequate reimbursement from insurers for some aspects of care; and limited experience on how best to deliver care. Recommendation 5: The Centers for Medicare and Medicaid Services (CMS)
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More than 60 percent of cancer survivors are aged 65 and older, so the Medicare program should have a strong interest in identifying cost-effective models of care. Survivorship as a Public Health Concern CDC and the Lance Armstrong Foundation have developed a public health approach to survivorship care that may assist communities in identifying and addressing the survivorship needs of individuals, their families, and their health care providers (CDC and LAF, 2004; CDC, 2004a)
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These public health approaches are early in their development and resources are needed to evaluate the effectiveness of community-based services and comprehensive cancer control plans in improving the care and quality of life of cancer survivors. Recommendation 6: Congress should support the Centers for Disease Control and Prevention (CDC)
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with nonmetastatic breast cancer in 1991 or 1992 _________ while living in a SEER tumor registry area and who survived to the end of 1998 without What is the quality of evidence of cancer recurrence. preventive health care for breast cancer survivors?
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Breast cancer survivors received more preventive services (influenza vaccination, lipid testing, cervical and colon screening, and bone densitometry) in 19971998 than matched controls.
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Sample: 3,885 breast cancer survivors aged 65 and _________ older diagnosed with early-stage breast cancer in 1991. How frequently do older Examined mammography use in 2-year period breast cancer survivors following initial breast cancer treatment.
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In the 4 years of follow-up, a mean of 22 tests were ordered for 279 women getting any type of surveillance. Most tests were ordered by medical oncologists.
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. _________ Sample: 248 women who had reported a history of To what extent are rural breast breast cancer in a 1994 survey of women ages 50 cancer survivors getting annual to 80 living in 40 communities in predominantly mammograms?
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Women who had a recent physician recommendation for mammography and those whose breast cancer had been originally detected by mammography were more likely to have had a recent mammogram. Mammography 81% of women had at least one mammogram within 3 years of diagnosis.
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Serum PSA How tumor stage affects And eight infrequently used modalities: American urologists' surveillance 1. Chest X ray strategies after prostate cancer 2.
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88% of surgeons wanted the state chapter of the ACS to establish clinical guidelines or practice parameters. Geographic variation Surveillance practices were not affected by MSA, census region, or area HMO penetration rate.
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following potentially curative colorectal cancer surgery Sample: 44,768 non-Hispanic white, 2,921 black, (Ellison et al., 2003) and 4,416 patients from other racial/ethnic groups _________ aged 65 and older at diagnosis, with a diagnosis of local or regional colorectal cancer between 1986 How does race/ethnicity affect and 1996, and followed through December 31, 1998.
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More than 70% of the bowel surveillance procedures received were colonoscopy. Blacks were nearly 40% more likely than non-Hispanic whites to receive posttreatment bowel surveillance with barium enema.
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cancer surveillance care following treatment with Sample: 251 patients aged 40 with colorectal cancer curative intent diagnosis from 1990 to 1995 and treated with (Elston Lafata et al., 2001) curative intent.
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DELIVERING CANCER SURVIVORSHIP CARE 265 Results Low use of post-diagnosis colon surveillance was observed. No surveillance occurred for 17% of the cohort.
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Colorectal cancer screening Method: 1997 mailed questionnaire to 2,310 and surveillance practices by primary care physicians (family practice, internal primary care physicians: medicine)
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DELIVERING CANCER SURVIVORSHIP CARE 267 Results One or more colonoscopies were performed in 51%, with an average of 2.9 procedures performed among those tested; sigmoidoscopy was performed in 17%. The rate of colonoscopy was highest during the initial 18 months.
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as reported in two provider surveys. How practice patterns in colon Sample: 1,663 members of the American Society cancer patient follow-up are of Colon and Rectal Surgeons (ASCRS)
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MSA population size and geographic location generally did not explain variation in surveillance practices. Continued
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Annual follow-up was conducted cancer screening practices? through medical records, telephone, and/or mailed questionnaires.
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10 women developed 12 breast cancers during the study, all evident on mammogram (2 detected at baseline; median time of follow-up 3.1 years)
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month 7 to month 36 were examined. What patient and primary care provider characteristics are Statistical methods: Logistic regression.
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DELIVERING CANCER SURVIVORSHIP CARE 273 Results Only 40% of the entire cohort had an examination during all five intervals; 18% had low-intensity surveillance (bladder exam during fewer than two of the five contiguous 6-month intervals)
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cancer patients. _________ Profiles of hypothetical patients suitable for post-operative surveillance and a detailed What are the surveillance questionnaire based on the profiles were mailed practices of thoracic surgeons to STS members.
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or advanced-stage patients (17%) after lung cancer resection.
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Plastic and Reconstructive Surgeons (ASPRS; randomly chosen from the 4,320 members) surveyed How surgeon age affects in 1998 on use of 14 follow-up modalities during post-treatment surveillance years 15 and 10 following primary treatment for strategies for melanoma patients with cutaneous melanoma.
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The intensity of post-treatment surveillance practice patterns of ASPRS members caring for patients with cutaneous melanoma varies markedly. Factors accounting for this variation include geography, MCO penetration rate (chest X ray highest in areas with low MCO penetration rate; 5S-cysteinyl dopa testing highest in areas with high MCO penetration rate)
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Statistical methods: Kaplan-Meier analysis and log-rank test. Explanatory variables: Gender and age, tumor stage and thickness, geographic area.
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DELIVERING CANCER SURVIVORSHIP CARE 279 Results Surveillance testing was relatively common, ranging from 13% for abdominal ultrasound to 80% for laboratory testing. Follow-up skin examinations were performed in 70% to 90% of patients.
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upper aerodigestive tract 4. Serum liver function tests cancer patient follow-up 5.
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Surveillance practice patterns of surgeons do not vary substantially with practitioner age. Intensity of follow-up decreases with time post-surgery.
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were asked about the following How does current clinical surveillance tests: practice compare to Imaging: recommendations in published · Chest radiography clinical practice guidelines? · CT of head and neck, chest · MRI of head and neck · Sonogram of head and neck · Bone scan Blood tests · Complete blood count, electrolytes (with or without calcium)
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DELIVERING CANCER SURVIVORSHIP CARE 283 Results Most surgeons relied on directed history, physical examination, and routine chest radiograph at varying intervals for detection of recurrences and second primary tumors. Other tests were used sporadically.
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How surgeon age affects 1. Office visit surveillance strategies for 2.
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Tumor grade and size significantly impacted physician practice patterns in posttreatment follow-up, although the degree of variation attributable to these variables was modest. Office visit, complete blood count, liver function tests, chest X ray, chest CT, extremity CT, and extremity MRI were ordered more frequently with increasing tumor grade and size.
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. follow-up of cancer survivors?
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A sizable number received physical examinations at a frequency in excess of what is currently recommended. Most survivors received recommended testing for local recurrence, however, less than two-thirds of colorectal cancer patients received recommended colon examinations in the initial year after treatment.
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Estimates of cancer-related ambulatory care are somewhat hampered by the exclusion of radiologists from the sampling frame of office-based providers. NHAMCS NHAMCS provides information on ambulatory care provided in hospital outpatient departments.
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Much of the work of relevance to the delivery of cancer survivorship care comes from the United Kingdom, where cancer care is being reorganized and the results of restructuring efforts are being evaluated through clinical audits (Tattersall and Thomas, 1999)
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A shared cancer care program implemented and tested as part of a clinical trial had a positive effect on patients' evaluation of cooperation between the primary care providers and specialists (Nielsen et al., 2003)
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Long-term cancer survivors who have been followed for many years by specialists are sometimes reluctant to return to their primary care physician for follow-up, even when reassured that they are at low risk of recurrence. One group of British clinicians noted that a feeling often expressed by patients seen for many years in their specialty clinics was "As long as I keep coming here I feel I'll be alright" (Glynne-Jones et al., 1997)
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These findings have prompted some British hospitals to limit specialty follow-up after treatment for breast cancer to 2 years, after which time oncology providers coordinate with local general practitioners and arrange for patients to be seen by their general practitioners with immediate access to specialist review in the breast care unit if needed (Donnelly et al., 2001)
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To encourage breast cancer patients to seek information about cancer from their general practitioners, one group of investigators in England tested giving women cards with specific information about their treatment to take to their general practitioner (Luker et al., 2000)
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. Other assessments in the United Kingdom also suggest that breast cancer survivors are accepting of a specialist nurse-led system of follow-up care (Earnshaw and Stephenson, 1997; Pennery and Mallet, 2000; Renton et al., 2002)
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Genetic tests are commercially available and may be of value for certain cancer survivors and their family members. For example, women diagnosed with breast cancer who have a strong family history of breast and/or ovarian cancer are often tested to determine if they are among the estimated 5 to 10 percent of women with breast and ovarian cancer that is caused by mutations in the BRCA1 and BRCA2 genes.
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and providing counseling (50 percent) , however, these estimates suggest that additional education and training in this area is needed for all providers who are likely to encounter cancer survivors in their practices (see Chapter 5)
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. Although cancer rehabilitation has been recognized as valuable, organized rehabilitation programs for cancer survivors are limited and lag behind those organized for patients with other chronic conditions such as heart disease for which rehabilitation is now considered a part of standard care
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Oncologists and surgeons report that rehabilitation services are not available, or if available, are not adequately covered by health insurance. While there is anecdotal evidence of problems with access to rehabilitation services for cancer patients, there has been little systematic documentation of such problems among contemporary cancer survivors.
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Evidence Regarding the Risk of Disability and the Need for Services Relatively few studies adequately document the prevalence of physical and functional limitations among contemporary cancer survivors.
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Without such studies it is difficult to gauge how many cancer survivors need rehabilitation services and the extent of any access problem that may exist. Evidence Regarding What Services Should Be Provided Relatively few clinical trials have been conducted to assess the effectiveness of cancer rehabilitation services, and those that have been conducted have focused on inpatient rehabilitation (especially for patients with cancers of the brain or spinal cord)
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. Who Should Deliver Services Members of the cancer rehabilitation team trained to address the physical, functional, and vocational concerns of cancer survivors are shown in Box 4D-2.
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, but there have been no attempts to assess which models of care are more effective or preferred by cancer survivors. The Consequences of a Lack of Evidence Without evidence of the effectiveness of services and optimal delivery systems, patients cannot easily make personal health care decisions, health care providers lack the clinical practice guidelines they need to optimize care, and insurers and payors lack the tools they need to ensure that appropriate care is given.
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For women with breast cancer, for example, available evidence suggests that nonpharmacologic treatments, especially complex decongestive therapy, is effective for lymphedema. This therapy involves skin care, multilayer low-stretch bandaging, exercise, and massage techniques, followed by long-term fitted elastic compression (Sparaco and Fentiman, 2002; Kligman et al., 2004)
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Such evidence is needed before the perceived barriers to access to these services can be overcome. Research is critical to better elucidate the post-treatment rehabilitation needs of cancer survivors.
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Taken overall, approximately 30 percent of women show significant distress at some point during the illness, and the number is greater in women with recurrent disease whose family members are also distressed. Interventions to address psychosocial problems and distress begin with basic information about the disease and treatment options from the breast cancer care clinician (often a medical oncologist)
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Receiving adequate information and the ability to ask questions in a comfortable way are basic needs for addressing psychosocial concerns. Breast cancer care occurs primarily in private office-based practices that routinely do not employ psychosocial professionals.
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2005b. Cancer Survivors' Network.
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Presentation at the meet ing of the IOM Committee on Cancer Survivorship, Woods Hole, MA. Braun TC, Hagen NA, Smith C, Summers N
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2004. A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies.
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2003. Quality of non-breast cancer health maintenance among elderly breast cancer survivors.
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2000. Managing meno pausal symptoms in breast cancer survivors: Results of a randomized controlled trial.
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1994. Impact of follow-up testing on survival and health-related quality of life in breast cancer patients.
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2003a. Childhood Cancer Survivorship: Improving Care and Quality of Life.
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2005a. Cancer Survivorship Centers.
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2001. Establishing an evidence base for the specialist breast nurse: A model for Australian breast cancer care.
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. NCCS (National Coalition for Cancer Survivorship)
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2004. Health care of young adult survivors of childhood cancer: A report from the Childhood Cancer Survivors Study.
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2000. Lymphedema: Knowledge, treatment, and impact among breast cancer survivors.
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2000. Underutilization of mammography in older breast cancer survivors.
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Presentation at the meeting of the IOM Committee on Cancer Survivorship. Irvine, CA.
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From page 321... ...
2005. Cancer Survivorship, Program #466 1/9/2005.
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Key Terms
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