Implementing Cancer Survivorship Care Planning Workshop Summary (2007) / Chapter Skim
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Appendix D Commissioned Background Papers
Appendix D Commissioned Background Papers
Pages 143-275
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Appendix D Commissioned Background Papers
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The availability of new and better drugs for treating cancer means that patients are living longer, receiving more treatment, and managing the consequences of these therapies. In turn, living longer means that cancer patients' medical records become thicker and it becomes even more challenging and time-consuming to create a history from those written records.
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As cancer patients live longer and the range of chemotherapy treatment options expands, patients are ever more likely to receive care from multiple physicians, across diverse delivery systems, over periods of many years. Both the longer periods of survival and the multiplicity of providers make it especially challenging for oncologists to assemble all the information that is necessary to understand a patient's cancer treatment history.
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The "transition to survivorship" care plan is simply a special type of chemotherapy treatment summary that requires special attention to issues of long-term follow-up such as fertility, management of late- and long-term effects of cancer, and screening recommendations. The objective of ASCO and the National Coalition for Cancer Survivorship's (NCCS)
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to improve the efficiency of cancer care delivery by streamlining documentation for clinicians and clinical support staff. Box D.1-1 describes three components of care -- care coordination, communication, and efficiency-that could be improved by changing the culture of oncology practice to include treatment summaries.
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In particular, the NCI and ASCO have conducted large-scale studies to characterize the state of cancer treatment and more recently to develop "Navigator" programs to prevent patients from becoming lost in the web of a complex system.5,6 Starting in 1998, ASCO and the Susan G Komen Foundation sponsored the National Initiative on Cancer Care Quality (NICCQ)
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, the American Cancer Society, and the IOM to improve the care of cancer survivors. The need for a treatment summary was also evident in other research initiatives, including the NCI's Cancer Care Outcomes Research and Surveillance Consortium (CanCORS)
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However, synoptic treatment plans and summaries are not simply intended to make care safer and more effective for cancer patients in nononcology settings; they can also help oncologists with coordination. When communicating with other oncologists and between oncologists and their colleagues in closely related fields like surgery and radiation oncology, every oncologist has confronted the onerous task of reading through reams of office notes and flow sheets to ascertain what chemotherapy was delivered, why it was delivered, and how it was tolerated.
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As a result, when multiple oncologists are involved in a patient's care, they typically request a patient's entire record and thus create a workload that burdens office staff and physicians. A chemotherapy treatment plan outlining the planned regimen and a subsequent treatment summary describing how treatment was tolerated and the outcomes of care could streamline communication among oncologists and between oncologists and other key cancer-care providers, such as surgeons and radiation oncologists.
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Consider the challenge for an emergency room (ER) physician evaluating a dehydrated patient with longstanding metastatic breast cancer.
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Nor does this documentation provide useful information for quality reporting or practice improvement. Unlike HFCA rules for reimbursement, the purpose of the treatment plan/ treatment summary initiative is to infuse meaning into medical recordkeeping.
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Several promising initiatives are underway, however, to implement the recommendation of both the President's Cancer Panel and the IOM Committee on Cancer Survivorship. These efforts are focused on developing a care plan, treatment summary, and follow-up plan for patients finishing their primary treatment.
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Chemotherapy Treatment Summary A chemotherapy treatment summary is a succinct, ideally one-page document prepared at the end of a course of treatment or when a patient completes adjuvant therapy when a regimen is discontinued because of toxicity. The summary might be appended to the treatment plan.
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; · Who is responsible for performing follow-up and any other special monitoring. Survivorship Care Plan When cancer patients transition from active treatment to surveillance, and then from close surveillance to long-term survivorship, it is important to generate both a summary document that specifies any ongoing problems for that patient and schedules for follow-up evaluations and procedures.
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This section addresses some of the most frequent questions and concerns that have been raised by oncologists, primary care physicians, active patients, and survivors during the early development phases of the ASCO initiative. The target audience for treatment plans and summaries includes both patients and health care providers; however, it is a challenge to address both audiences effectively with the same document.
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Patients themselves should be encouraged not only to keep but also to provide a copy of their treatment summary and plan for follow up to future health care provider. Because of the documents' more general medical language, many patients will understand their details with little difficulty.
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Static or Living Document? Treatment summaries will need to be updated as screening recommendations change, as recurrences that warrant additional testing arise, and as new evidence on late effects emerge.
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Ensuring that all cancer patients receive these summaries will require fundamental change in how oncologists deliver care. Changing deeply embedded practice and documentation patterns, however, will not be easy.
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The goal of the treatment plan and summary is to achieve meaningful improvement in cancer care delivery and the patient experience. Changing the culture of documentation is intended to facilitate improved dialogue between patients and their health care providers.
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Understanding cancer treatment and outcomes: the Cancer Care Outcomes Research and Surveillance Consortium. J Clin Oncol.
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population.2,3 While these numbers are encouraging, it is important to acknowledge that the impact of cancer is significant and associated with several long-term health and psychosocial sequelae.2-15 Indeed, cancer survivors constitute a vulnerable population who have distinct health care needs.7,16 Data clearly show that compared to general age- and race-matched populations, cancer survivors are at greater risk for developing second malignancies and other diseases, such as cardiovascular disease (CVD) , diabetes, and osteoporosis.2-16 An early comparison by Brown et al.6 of over 1.2 million patient records obtained from the SEER database with those obtained from the National Center for Health Statistics found a significantly higher noncancer relative hazards ratio for cancer patients of 1.37 and concluded that "the evidence that cancer patients die of noncancer causes at a higher rate than persons in the general population is overwhelming." Data collected over the past decade confirm these findings.2-4,8,17 These competing causes of death and comorbid conditions are believed to result from cancer treatment, genetic predisposition, and/or common lifestyle factors.2,4,13-15 *
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. These findings have been confirmed by other studies in diverse populations of cancer survivors.18-23 From an economic perspective, an analysis by Chirikos et al.24 indicated that "the economic consequence of functional impairment exacts an enormous toll each year on cancer survivors, their families and the American economy at large" 24, findings confirmed by others.25-28 Based on these national trends, cancer survivorship is fast emerging as a public health concern and has been set as a national priority.2-5,8,13 In a recent Institute of Medicine (IOM)
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Furthermore, increased premorbid body weight has been associated with cancer mortality for cancers of the breast, esophagus, colon and rectum, cervix, uterus, liver, gallbladder, stomach, pancreas, prostate, kidney, nonHodgkin's lymphoma and multiple myeloma, as well as all cancers combined.40-42 Finally, additional weight gain is common during or after treatment for various cancers, and may exacerbate risk for functional decline, comorbidity and perhaps even cancer recurrence and cancer-related death.43-45 While studies exploring the relationship of post-diagnosis weight gain and survival have been somewhat inconsistent,45-50 the most recent published study by Kroenke and colleagues,45 the largest to date (N=5,204) , suggests that breast cancer survivors who increased their BMI by 0.5 to 2 units were found to have a relative risk (RR)
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is a documented side effect of both chemotherapy and hormonal therapy,63-67 exercise, especially strength training exercise, may be of particular importance for cancer survivors since it is considered the cornerstone of treatment for this condition.68 To date, however, only one study has reported the physiologic effects of resistance training exercise in cancer survivors, a pilot study by McKenzie and Kalda69 where preliminary data suggest that arm exercises among breast cancer patients are safe and not associated with increased risk of lymphedema, but where no outcomes exist regarding body composition.69 As noted in the IOM report29 and the research of others,70 cancer survivors also may have particular problems with self-esteem and depression that may undermine the ultimate success of weight management programs. More research is needed to develop interventions that not only address the unique physiological needs of this population, but also their distinct psychological issues as well.
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may be more important than absolute amounts.35,37,58 Given that cancer survivors are at high risk for other chronic diseases, the recommended amounts and type of fat, protein, and carbohydrate to reduce these disease risks also are germane.35 A 2005 study by Kroenke et al. of 2,619 breast cancer survivors participating in the Nurse's Health study suggests that those who report a prudent diet (e.g., high proportional intakes of fruits, vegetables, whole grains, and low-fat dairy products)
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and overall mortality.90-92 Currently, the recommended level of fat in the diet is 20-35% of energy, with saturated fat intake limited to <10% and trans fatty acids limited to <3% of total energy intake.58 Protein To date, few studies have examined the relationship between protein intake and cancer specific outcomes in humans. One study, however, found that, increased intakes of red meat, bacon and liver were associated with recurrence among early-stage breast cancer survivors.93 Given these data, as well as strong evidence that red meat and processed meat are associated with increased primary risk for colorectal cancer, survivors are encouraged to limit their consumption of these foods.35,89 Protein intakes of roughly 0.8 g/kg of body weight are recommended with 10-35% of energy coming from protein.94 Carbohydrates As with protein, little research has been undertaken with regard to carbohydrates (starches, sugars and fiber)
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daily servings.35,58,91 Specific Foods or Dietary Regimens While various functional foods and dietary regimens have been identified as being potentially helpful in hindering progressive or recurrent disease among cancer survivors, to date, there is little consensus or results from randomized controlled trials, to support the use of specific foods, such
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report and the three prior systematic reviews, these recent studies continue to predominantly focus on breast cancer104-106,108,110,111 with one study each in lung109 and mixed cancer patients.107 Most studies tested the effects of a combined endurance and progressive resistance training program,104-111 two used endurance only,110,111 and one used resistance training only.105 The intervention length ranged from 2 to 12 months, and study endpoints were varied and included
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However, additional large-scale, well-controlled intervention studies in other cancer populations, as well as breast cancer survivors, are required that provide a comprehensive examination of safety issues. Since the IOM report, two recent landmark studies have been reported that examined the association between physical activity and cancer recurrence and overall survival in persons diagnosed with breast112 and colon cancer.113 In the first study, Holmes and colleagues examined the association between self-reported physical activity levels and breast cancer recurrence and mortality in a cohort of 2,987 female nurses participating in the Nurses Health Study who had been diagnosed with early-stage breast cancer.112 Results indicated that women who engaged in 9 or more metabolic equivalent (MET)
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Thus, appropriate CVD and cardiac screening procedures are recommended prior to the initiation of an exercise program. One additional long-term concern in breast cancer survivors initiating an exercise program is lymphedema.
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endurance and logic, or testicu- Control resistance exercise lar survivors an (39) training program average of 1 month post treatment Cheema et al.108 Breast 34 dragon-boat 57.7 Pre-Post Combined supervised survivors an resistance and endur average of 5 yr ance exercise training post treatment program Spruit et al.109 Lung 10 survivors an 65.5 Pre-post Combined supervised average of 3 resistance and months post endurance exercise treatment training program Wilson et al.110 Breast 24 African- 55 Pre-post Theory-based American community-based survivors an walking program average of 3 month post treatment ABBREVIATIONS: IGF-II, Insulin-like growth factor II; METs, metabolic equivalent; QOL, quality of life; RCT, randomized controlled trial; RPE, rate of perceived exertion; VO2peak, Peak Oxygen Consumption (mL.kg.min1)
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No gymnastics at a moderate intensity improvements in pulmonary function 2 months 8 weekly 75 minute large and small Statistically significant in number of (follow-up physical activity counseling sessions steps & exercise beliefs. Significant at 3 body mass index & body weight months)
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Preventive Services Task Force provides a concrete framework for health care providers to deliver appropriate care regarding smoking cessation and is a featured element within the IOM report.29,129 Despite this extant framework, the barriers to longstanding smoking cessation success are substantial and findings from intervention trials have been mixed; the IOM report provides a solid overview of studies
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among 796 currently smoking adult childhood cancer survivors. They found that quit rates were significantly higher in the counseling group compared to the self-help group at both the 8-month (16.8% vs.
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. In considering alcohol as an independent risk factor, data suggest that head and neck patients who continue to drink at least 15 servings of alcohol per week have roughly a four-fold increased risk of developing a second primary tumor compared to those who abstain.136 Morbidity due to other causes such as pulmonary and cardiovascular disease, as well as alcohol-related conditions, also is significantly higher among survivors who continue to drink.137 In contrast, current evidence does not suggest that continued alcohol-use increases risk of recurrence or all-cause mortality among breast cancer survivors, even though alcohol-use is associated with the development of mammary carcinoma.37 Differences in dose and the reduced prevalence of alcoholism within this population may explain the lack of an association.
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A 2005 review by Monti and Yang,140 reports that CAM-use fulfills psychosocial needs that are inadequately addressed by the conventional biomedical system, and as the IOM report suggests, survivors may derive potential benefit for managing select side effects, as well as reducing pain and anxiety. Therefore physicians are encouraged to recommend select CAM therapies, such as support groups, massage, and relaxation therapy that appear safe for cancer survivors.
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suggesting that younger patients (particularly children) may have a greater inherent sensitivity to radiation.147 Given this evidence, cancer survivors, particularly those who have received radiation at a young age (i.e., childhood cancer survivors, hematopoietic cell transplant survivors)
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, radiation therapy, and thyroid-stimulating hormone suppressive therapy all enhance bone turnover and act to further compromise bone integrity.159,160 As such, osteo-penia, osteoporosis, and increased rates of fracture have been noted in a wide spectrum of cancer survivors, including breast, prostate, testicular, thyroid, gastric, and central nervous system cancers, as well as nonHodgkin's lymphoma and various hematologic malignancies.160-163 Osteoporosis is a well-documented problem not only among older adult survivors, but also among young adult survivors of childhood cancers.27,164167 The goals of patient care are early recognition of those patients at high risk for osteoporosis and to prevent fractures in patients with documented bone deterioration. The American Society of Clinical Oncology (ASCO)
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However, there is concern that cancer patients may be unable to provide a protective response to immunizations and, paradoxically, immunizations may even increase the risk of clinical infection.173 A recent systematic review examined the available published evidence on the role of immunizations in cancer patients who had not undergone bone marrow transplantation.173 The authors reviewed the efficacy and safety of vaccination against nine preventable diseases (i.e., haemophilus influenzae type b, hepatitis B, influenza, measles, meningococcal meningitis, poliomyelitis, 23-valent polysaccharide pneumococcus, tetanus, and
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Fewer studies have examined the efficacy of measles vaccinations in cancer survivors because of the risks involved with vaccinating immunocompromised individuals with live vaccines. Therefore, the Centers for Disease Control and Prevention recommends that cancer patients undergoing chemotherapy should not receive measles vaccinations.
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more likely to adhere to physical activity guidelines, for the most part their health behaviors parallel those of the general population -- a population marked by inactivity, overweight or obesity, suboptimal fruit, vegetable, and fiber consumption, and high intakes of fat.58,129,130 Similar results were found in another study that exclusively tracked lifestyle behaviors in a cohort of women (N=2,321) with early-stage breast cancer.43 Thus, findings of these larger, more recent studies are in direct contrast to prior findings -- differences that may be attributable to more heterogeneous samples of survivors who were followed for longer periods of time.
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An early study of 988 breast and prostate cancer survivors,181 suggests that most (57%) reported a preference for diet, exercise, and/or smoking cessation information "at diagnosis or soon thereafter" and that a significant decrease (p=.003)
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In two separate survey studies among breast and prostate cancer survivors (N=988, mean age 63 + 11 years) and childhood cancer survivors (N=209; mean age 20 + 6 years)
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by Jones et al.206 showed that breast cancer patients who received an oncologist's recommendation to exercise reported a mean increase of 3.4 MET hours per week, as compared to those not receiving a similar message (p=.011) , furthermore, the physician's recommendation was found to directly affect perceived behavioral control associated with behavioral change.207 Therefore, oncologists can play a key role in catalyzing behavior changes that have the potential for improving the overall long term health of their patients, and can rely on nurses and allied health personnel, as well as health behavior researchers to most efficiently and effectively promote behavior change.
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In Table D.2-4, a list of recommended resources are provided that offer comprehensive information on cancer survivorship issues reviewed in this report. A list of specialized resources also are provided that offer more in-depth information about select areas of health promotion (e.g., exercise, healthy weight, etc.)
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; http://www.cdc.gov/ http://www.livestrong. Providers Information Oncology to Contact http:www.cancer.org; http://www.aicr.org; http://cis.nci.nih.gov; 1-800-CDC-INFO cdcinfo@cdc.gov; cancer/survivorship/ 1-866-235-7205; org http://cancercontrol.cancer.gov/ocs for Available of of Cancer Institute Armstrong Cancer Research Information Control Office Survivorship Centers Lance STRONGTM Resources Organization American Society American Cancer Cancer Service The Disease The Foundation, LIVE National Center Cancer Selected D.2-4 Survivorship TABLE Wellness Health Behavior/Wellness General Issues
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; http://www.naaso. Wayne MD, Information 1010 Spring, Contact 877-NCCS-YES NCCS, Silver canceradvocacy.org; canceradvocacy.org/default.aspx 1-800-DIABETES AskADA@diabetes.org; diabetes.org/weightloss-and-exercise/ weightloss/portioncontrol.asp 1-800-AHA-USA1 http://americanheart.org 1-800-CDC-INFO cdcinfo@cdc.gov; nccdphp/dnpa/obesity/ http://www.obesityonline.org/ site/index.cfm; org/information/practicalguide.asp http://www.nhlbi.nih.gov/health/prof/ heart/index.htm#obesity Lung Cancer for for Diabetes Heart The Institute Control Heart Society National Centers Prevention Blood Organization The Coalition Survivorship American Association American Association The Disease and NAASO Obesity National and Continued D.2-4 Management TABLE Health Behavior/Wellness Weight
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193 the 50) a in Guide age continued statements exercise)
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194 and data, agencies address newsletters, that alcohol complementary topics complementary topics websites, Publication/ government national specific medicine specific medicine to health to organizations links and several several links to to alternative alternative Recommended Brochure/Website Several nonprofit alcohol Several NIAAA-sponsored etc. Links and (http://www.cancer.gov/cancertopics/ treatment/cam)
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195 links Skin http:// manuals manuals manuals manuals useful About and and and and news) index.php (several Know http://www.cdc http://www.nof.org cancer https://www immunization to brochures brochures brochures brochures Updates skin Need cancer; national several several several several http://www.cdc.gov/nip/gov/nip/ latest Cancer You to skin to osteoporosis; to osteoporosis; to the the Skin on www.aad.org/public/News/DermInfo/ DInfoSkinCancerUpdates.htm What Cancer http://www.cancer.gov/cancerinfo/wyntk/ skin Links about .skincancer.org/catalog/ Links about .gov/nccdphp/dnpa/bonehealth /osteoporosis_month.htm Links about Links about program; Cancer http://www.cancer.
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J Clin Oncol 21:855-63, 2003 22. Silliman RA, Prout MN, Field T, et al: Risk factors for a decline in upper body func tion following treatment for early stage breast cancer.
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Oncol Nurs Forum 29:517-32, 2002 32. Meacham LR, Gurney JG, Mertens AC, et al: Body mass index in long-term adult survivors of childhood cancer: a report of the Childhood Cancer Survivor Study.
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Breast Cancer Res Treat 48:53 64, 1998 63. Demark-Wahnefried W, Peterson BL, Winer EP, et al: Changes in weight, body com position, and factors influencing energy balance among premenopausal breast cancer patients receiving adjuvant chemotherapy.
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J Clin Oncol 21:463-6, 2003 70. Jenkins I, Djuric Z, Darga L, et al: Relationship of psychiatric diagnosis and weight loss maintenance in obese breast cancer survivors.
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J Clin Oncol 23:6631-8, 2005 99. Pierce JP, Newman VA, Flatt SW, et al: Telephone counseling intervention increases intakes of micronutrient- and phytochemical-rich vegetables, fruit and fiber in breast cancer survivors.
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Pinto BM, Frierson GM, Rabin C, et al: Home-based physical activity intervention for breast cancer patients. J Clin Oncol 23:3577-87, 2005 107.
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Emmons KM, Puleo E, Park E, et al: Peer-delivered smoking counseling for childhood cancer survivors increases rate of cessation: the partnership for health study. J Clin Oncol 23:6516-23, 2005 132.
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J Natl Cancer Inst 93:930-6, 2001 158. Twiss JJ, Waltman N, Ott CD, et al: Bone mineral density in postmenopausal breast cancer survivors.
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Clin J Oncol Nurs 9:177-84, 2005 171. Waltman NL, Twiss JJ, Ott CD, et al: Testing an intervention for preventing os teoporosis in postmenopausal breast cancer survivors.
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CMAJ 174:801-9, 2006 211. Demark-Wahnefried W, Kenyon A, Eberle P, et al: Preventing sarcopenic obesity among breast cancer patients who receive adjuvant chemotherapy: results of a feasibility study.
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recently released version 2 of a set of comprehensive, evidence-based, longterm follow-up guidelines for health care providers managing childhood cancer survivors.4 While recognizing that the length and depth of the COG guidelines are important in order to provide clinically relevant, evidencebased recommendations and supporting health education materials, clinician time limitations and the effort required to identify the specific recommendations relevant to individual patients using the current paper-based #* Texas Children's Cancer Center, Baylor College of Medicine *
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the Institute of Medicine (IOM) in their 2003 report Childhood Cancer Survivorship: Improving Care and Quality of Life;1,5 (2)
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However, the experience with long-term followup of childhood cancer survivors has provided sufficient evidence to link therapeutic exposures with potential late effects to inform guideline development. The pediatric oncology experience may provide a model for exploration of how guidelines for adult cancer follow-up care and management of other chronic conditions may be deployed and implemented.
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The remarkable improvements in pediatric cancer survival rates have brought with them a new set of challenges for health care providers and for national, state, and local health care systems. Childhood cancer survivors commonly experience late effects of treatment.13-24 Two-thirds or more of childhood cancer survivors are likely to experience at least one late effect,13,16-20 and in 25-40% of longterm survivors, the late effects associated with treatment for cancer are likely to be severe or life threatening.11,13-15,17,25 Late effects encompass a myriad of detrimental physical conditions providing evidence for the need for follow-up screening and early intervention These effects range from multiorgan and systems dysfunction or failure;26-62 to subsequent malignancies.21,48,63-71 In addition, chronic or subclinical changes persisting after cancer treatment may result in premature onset of common conditions associated with aging (e.g., diabetes mellitus, cardiovascular disease, hypertension, hyperlipidemia)
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At most, health care providers outside of aca demic centers may care for no more than a handful of survivors, usually each with different cancers, treatment exposures, and health risks, making delivery of appropriate care a daunting task. Consequently, primary care providers in the community setting are often unfamiliar with cancer-relat ed health risks and uncomfortable with supervising the care of childhood cancer survivors.136 pp.150-151 2f.
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For those treated with chest/mantle RT, 47.9% did not report a cancer-related follow-up visit; for those treated with a 300 mg/m2 cumulative anthracycline dose, the percentage not experiencing a cancer-related follow-up visit was 51.7%; for bleomycin treatment the percentage was 40.8%; and for high risk therapy, including any of the three just cited and/or treatment with etoposide or ifosfamide, the percentage was 50.7%.150 The study authors concluded that, for most study participants, the likelihood of a cancer-related follow-up visit or a physical examination decreased at an age when the risks for potentially modifiable late effects from cancer were on the rise.150 3. Health System Factors Influencing the Delivery of Effective Follow-Up Services 3a.
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4. Childhood Cancer Survivors: A Model for Long-Term Follow-Up for Cancer Treatment The survivors of childhood, adolescent, and young adult cancers repre
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-supported COG using therapeutic approaches that conform to COG-treatment protocols.6 · The late effects of cancer therapy have been and continue to be systematically investigated as part of the Childhood Cancer Survivor Study (CCSS) , involving 20,346 childhood cancer survivors diagnosed between 1970 and 1986 and treated at 26 cancer centers in the U.S.
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The discussion may be accompanied by reference to and review of specific steps that the patient and/or family member can take in monitoring for potential late effects and in intervening early if needed. Discussion of PFC participation may serve several purposes.
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The staged development of the PFC involves an iterative process informed by qualitative and quantitative research that includes focus groups and stakeholder interviews, prototype development, usability evaluation, clinic testing, and results-based improvement using an approach modified from that described by Mooney and Bligh.173 Findings from qualitative data collection indicate that survivors want information that explains their previous treatments and risks for late effects; they want the ability to control their medical information; they want and need recommendations for their follow-up care and informational resources tailored to their specific cancer history; and they require summaries that can be shared with their personal health care providers in order to ensure that the provider is aware of risks associated with prior childhood cancer treatment. It is anticipated that research that will occur during the various stages of PFC development may identify additional needs of survivors and providers that the PFC can be modified to address.
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Jude's Children's Research Hospital, Memphis, TN Member, COG Late Effects Committee ommendations (Figures D.3-2, D.3-3, and D.3-4; guidance for screening for other malignancies (Figure D.3-5) ; tailored survivor and health care provider education and information resources (Figure D.3-6)
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217 of and diagnosis, summary D.3-5 D.3-6 D.3-7 treatment D.3-2,3,4 of Fig.
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218 APPENDIX D.3 FIGURE D.3-2 Periodic history, physical, diagnostic imaging, laboratory and other evaluations are displayed with the type of evaluation that should be performed, the potential late effect that is being evaluated, the frequency of recommended evaluations and links to important additional information such as the COG Healthlink (see Figure D.3-6) , pertinent references and the full guideline (see Figure D.3-7)
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Comprehensive Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers have been developed by COG's Nursing Discipline and Late Effects Committee.4,174 COG members have enthusiastically endorsed broader dissemination and use of the guidelines in helping childhood cancer survivors and other health professionals who provide care to survivors to recognize and manage health risks related to late effects of treatment. In the most recent version of the guidelines released to the public (version 2.0 issued in March 2006)
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220 APPENDIX D.3 FIGURE D.3-4 This summary of yearly evaluations with the corresponding potential late effects will allow the health care provider to quickly view what needs to be assessed on an annual basis.
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221 summarized. are malignancies subsequent for screening for recommendations Risk-adjusted D.3-5 FIGURE
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An explanation of the levels of evidence related to each identified risk for a late effect is also presented. The scores assigned, according to a modified version of the National Comprehensive Cancer Network "Categories of Consensus,"175 relate to the strength of association of the identified late effect with the specific therapeutic exposure based on current literature.4 Each score is coupled with a recommendation for periodic health screening based on the collective clinical experience of the panel of experts who developed the guidelines.
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223 the of strength the of score The D.3-2)
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PFC development has required addressing a number of challenges. A brief review of the barriers confronting PFC developers may prove informative for the broader initiatives addressing the needs of all 10 million adult cancer survivors in the United States.
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In doing so, COG guideline developers recog nized that there are no randomized clinical trials available on which to base recommendations for periodic screening evaluations of childhood cancer survivors.4 As a consequence, professionals involved in guide line development examined "... the strength of data from the literature linking a specific late effect with a therapeutic exposure, coupled with an assessment of the appropriateness of the screening recommendation based on the expert panel's collective clinical experience."4,p.
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As data emerge regarding indications and recommendations for fol low-up, the guidelines for long-term follow-up for potential late effects are anticipated to change. With paper-based or token-based (e.g., a smart card)
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Early stakeholder involvement ensures that the selection of technologies and applications meets provider needs and can be used within extant clinical environments. Stakeholder involve ment must engage the full range of individuals who will be involved in application use and maintenance (e.g., individuals entering clinical data into the Care Summary, nurses and health care providers using the recommendations, guideline developers, and patients)
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Even greater challenges may be faced by developers who, for legitimate scientific reasons, must focus initially on smaller audiences or specific subsets of larger patient populations, such as childhood cancer survivors. Public funding agencies interested in encouraging de velopment of innovative decision-support tools for chronic disease, should consider reevaluating current requests for applications (RFAs)
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Also, involvement of other experts in areas such as health communications, patient adherence, quality improvement, social psychology, health literacy, patient privacy and confidentiality, ethics, security, and interoperability standards may prove valuable in application development and in achievement of a successful outcome. Furthermore, resources, including funding, should be available to explore experimentally the efficacy and practicality of approaches for health care provider and patient behavioral change, including evolving continuing medical education and patient education approaches that may prove critical in improving professional and pa tient compliance and changes in health outcomes.
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From page 230... ...
It is attractive to consider applying a PFC-like approach to the care of adult survivors of cancer, however, it is important to recognize that follow-up of patients treated for cancer as adults poses unique challenges that differ from those encountered in the population of childhood cancer survivors. Adult cancer patients are typically treated in the offices of private oncologists, rather than in academic medical centers, as are the majority of children with cancer.
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From page 231... ...
, Weiner SL, Simone JV, Hewitt ME. Childhood Cancer Survivorship: Improving Care and Quality Of Life.
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From page 232... ...
Risk of selected subsequent carcinomas in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. J Clin Oncol.
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Abnormalities of the thyroid in survivors of Hodgkin's disease: data from the Childhood Cancer Survivor Study. J Clin Endocrinol Metab.
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From page 234... ...
Breast cancer after childhood cancer: a report from the Childhood Cancer Survivor Study. Ann Intern Med.
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Obesity in adult survivors of childhood acute lymphoblastic leukemia: a report from the Childhood Cancer Survivor Study. J Clin Oncol.
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Young adult survivors of childhood cancer: attending to emerging medical and psychosocial needs. J Pediatr Oncol Nurs.
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Symptoms of posttraumatic stress in young adult survivors of childhood cancer. J Clin Oncol.
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Childhood cancer survivors in the dark. J Clin Oncol.
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Predictors of smoking initiation and cessation among childhood cancer survivors: a report from the childhood cancer survivor study. J Clin Oncol.
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Development of risk-based guidelines for pediatric cancer survivors: the Children's Oncology Group Long-Term Follow-Up Guidelines from the Children's Oncology Group Late Effects Committee and Nursing Discipline. J Clin Oncol.
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Effects of computer-based clinical decision support systems on physician performance and patient outcomes: a systematic review.
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From page 242... ...
The purpose of this paper is to examine this potential, and to critically assess both the capabilities and weaknesses of organizations engaged in regional cancer control activities. Cancer Control as a Regional Issue The term "regional" could define many different types of geopolitical units.
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From page 243... ...
Planning is a collaborative process in which the state health department cancer control program staff convene work groups to examine cancer trends and risk factors, then to examine existing resources and opportunities, and finally to create consensus objectives and strategies to reduce the state's cancer burden. At this time, 44 states have completed the cancer planning process, with publication of their state cancer plans.3 The implementation stage then follows, a prolonged period with no definable ending, in which collaboratives in the state work to develop a comprehensive cancer control program and to accomplish the goals set out in the cancer plan.
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From page 244... ...
Within the coalitions, most of the planning and communication occurs within work groups or task forces. The composition of these groups differs across states but usually includes disease-specific groups (e.g., breast cancer, colorectal cancer, prostate cancer, skin cancer)
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From page 245... ...
Most public health workers who convene cancer coalitions have not been trained as health care providers and are much more fluent in public health skills such as mass marketing, health education, and surveillance, than in matters pertaining to clinical cancer care. One result of the low level of provider input into state cancer programs has been the low profile of goals and strategies to meet the many needs of cancer patients in treatment, rehabilitation, and survivorship.
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From page 246... ...
Special surveys would be done to accomplish that assessment. In the Oregon plan, objective #3 is to "Increase the proportion of cancer patients who are informed and participate with their provider in their long-term follow-up care plan." That objective would be achieved
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From page 247... ...
Survivorship planning is rarely pointed to in state cancer plans, probably because the idea of cancer survivorship plans is fairly new, and there is as yet little evidence basis for including it as a statewide objective. Many state cancer plans only generally acknowledge the many needs of cancer survivors, however, and many plans merely point to the general needs of
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From page 248... ...
Access to quality care and services is also a challenge for public-health-dominated coalitions, as public health agencies provide very little cancer care, and health care access is now determined more by insurance and entitlement programs than by public health agencies. Other State-Based Organizations Relevant to Cancer Survivorship Many state-based organizations are active in cancer survivorship programs.
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From page 249... ...
NCI could, as a matter of policy, also mandate that that all patients exiting the first course of treatment in clinical trials be provided a full written treatment summary and follow-up plan, essentially a cancer survivorship plan. If such a policy were not accompanied by additional resources, it would be met with some resistance from clinicians, but clinical trial systems in both cancer centers and in the com
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From page 250... ...
These professional organizations tend to impact problems of clinical care at a national level, but there are often viable local or state-level chapters, and many of the leaders in these organizations are also active members of state cancer coalitions. ASCO has been active in setting standards for cancer care, and cancer survivorship planning could eventually be added into quality cancer care standards.
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From page 251... ...
The LAF has had mostly a national impact via successful publicity on cancer survivorship and rehabilitation tied to Lance Armstrong's personal story, but in addition it is now creating regional impact by creating LIVESTRONG Centers of Excellence in cancer survivorship at selected cancer centers across the United States (now in New York, Boston, Denver, Los Angeles, and Seattle)
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From page 252... ...
Cancer survivorship planning could most quickly have regional and statewide impact if it were to be instituted as part of a state's comprehensive cancer control program. A successful process would need to engage health care providers, however, much more than is currently the norm in cancer control programs.
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From page 253... ...
253 of plans cancer could fund cancer a in Types survivorship education and in developed care projects quality for projects including for projects surveillance project cancer planning are evaluate evaluate with Various of objectives and and potential outcomes advocate by increase models Opportunities Define and coverage issues Create demonstration Create demonstration improvement survivorship High once Demonstration assess satisfaction Could demonstration Faced to than cancer CMS the Regions terms a in health for in not from to connected Opportunities stronger is issues issues is well and linked there mandate Planning mission cost be delivery focus time, professions and not weakly competing competing providers to care service this time Weaknesses Only care Research the At survivorship Many health Many of Tend health Weaknesses, Survivorship and of regions, Cancer been to set Strengths, programs individuals plans of chronic Services. control promote to and have very to interests other comprehensive the services by cancer ability Selected Uptake of evaluation for of need Medicaid in projects survivorship the & of the coalitions and out direct norms largely survivors would out have Strengths Conveners cancer Expertise design Effective carried conditions Composed who carry Provide and practice Driven cancer Medicare for Summary Affecting A in Centers health systems = D.4-2 improvement centers professional care organizations CMS public TABLE Organizations State departments Comprehensive cancer Quality organizations Health societies Health Nongovernmental cancer NOTE:
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From page 254... ...
, other collaborating institutions, and the states in developing comprehensive cancer control plans that include consideration of survivorship care, and promoting the implementation, evaluation, and refinement of existing state cancer control plans." Based on these recommendations, and in light of the regional organizations and opportunities reviewed above, the following specific recommendations are proposed: 1. Add cancer survivorship planning into to state cancer plans.
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From page 255... ...
If the demonstration projects show that the survivorship care plans provided to patients do, indeed, lead to reduced confusion, improved compliance with follow-up recommendations, and improved quality of life for long-term cancer survivors, then it will be important to develop mechanisms of widespread dissemination of this type of service. The providers who partner to demonstrate and evaluate this service will likely not be representative of all providers.
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From page 256... ...
2004. A National Action Plan for Cancer Survivorship: Advancing Public health Strategies.
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From page 257... ...
report From Cancer Patient to Cancer Survivor: Lost in Transition recommended that "survivorship care plans" be created for patients as they complete primary therapy for cancer in order to ensure clarity for all involved about patients' diagnoses, treatment received, and plan for surveillance. The survivorship care plan should explicitly identify the providers responsible for each aspect of ongoing care and give information on resources available for psychosocial and other practical issues that may arise as a result of the prior cancer diagnosis.
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From page 258... ...
This review will not address the critical role of basic science research to elucidate such things as the mechanisms of long-term and late effects, and will not get into specific questions regarding surveillance for particular cancers. Rather it will focus on the general health services research questions around evaluating the implementation of various aspects and models of survivorship care planning at the point of transition from active cancer therapy.
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From page 259... ...
. When appropriate, recommendations that first-degree relatives be informed about their increased risk and the need for cancer screening (e.g., breast cancer, colorectal cancer, prostate cancer)
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From page 260... ...
260 trials record analysis Before/after Natural experiments Design Cross-sectional surveys Medical review Administrative data Prospective cohort Quasi- experimental o o Randomized controlled Qualitative Observational o o o Interventional o o o Study · · · the of Plan lectronic Oral/informal Written Standardized Portable Format Care · · ·E · · clinic etc.) practitioner provider specialists Plans other Oncology specialist Nurse allied or Other Dedicated survivorship Other organizational characteristics (insurers, Care Setting · · · · · cancer Survivorship survivors groups All Specific types Age Racial/ethnic groups Socioeconomic status Geography Family/caregiver effects Population · · · · · · · Evaluate to time, life perceived utility of patterns Studies Anxiety, depression Physical Functional status, health, care Resource utilization, cost Knowledge Satisfaction Symptoms o o Quality o Survival Communication/ coordination Practice Processes/quality of Efficiency o Outcome Patient-level · · · · · Systems-level · · · · Constructing plan issues D.5-2 element clinical survivorship plan available plan Entire care Treatment summary Possible course Surveillance Lifestyle recommendations Psychosocial and resources TABLE Care · · · · · · xxx
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What is outlined below is a discussion of the elements of study design that would contribute to the evidence base to support or refute the inclusion of individual components of the IOM's broad call to implement survivorship care planning as a standard of care in oncology practice. Treatment Summary While some specialists, by virtue of carrying out discrete treatments, routinely create summaries of their own therapies (e.g., operative notes or radiation completion summaries)
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From page 262... ...
This includes estimating the time frame over which acute toxicities would be expected to subside, long-term effects that would not be expected to substantially improve, and/or late effects that could occur at some time in the distant future. It would also include advice about what signs and symptoms could portend a relapse and should prompt medical attention.
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From page 263... ...
It is important to understand whether survivorship care planning can help increase the likelihood of appropriate workup of symptoms that may portend cancer recurrence or treatment late effect while not causing overly aggressive investigation of vague unrelated symptoms. Psychosocial Issues and Resources The challenges of cancer survivorship go beyond physical issues.
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From page 264... ...
The challenge in designing research is to choose end points that are going to be responsive to the effects of survivorship care planning so that improvements will be feasibly detected, yet are still important enough to be worth the effort of care planning. It would be optimal for the health services research community to converge as much as possible on a set of consistent outcome measures so that separate research groups can assess different models of care and still produce results that can be compared across studies.
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From page 265... ...
Assessing whether the survivor and involved providers are aware of and agree on who will take on the various roles of cancer surveillance, screening for other cancers where appropriate, and noncancer and preventive care is an important end point to consider studying. Acceptability and Satisfaction As different methods of implementing survivorship care plans are developed and tested, the satisfaction with and acceptability of the format of care planning needs to be assessed.
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From page 266... ...
Processes and Quality of Care While not enough is known about the efficacy of treatment summaries and survivorship care plans to establish the simple fact of their creation as indicators of quality cancer care, some of the processes embedded in the care plans do have sufficient evidence base to be evaluated as measures of quality. In this way, quality of care becomes an outcome by which different models of care can be evaluated.
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From page 267... ...
As a result, it is appropriate for investigators to design studies that inquire whether survivorship care planning could affect satisfaction and health-related quality of life outcomes for caregivers as well.
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From page 268... ...
In addition, other specialists may be involved, and/or a "shared care" model of cooperation between specialists and primary care physicians in the follow-up of the cancer survivors could be attempted. The logistics of implementing formal survivorship care planning would be quite different if it was envisioned to occur in an oncologist's office, primary care practice, or specialized survivorship clinic.
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From page 269... ...
Creating even a standardized survivorship care plan is time-consuming and difficult, however. Providers could attempt to create a document as they go along during the course of care, but realistically, busy oncologists are usually stretched to their limit dealing with the acute toxicities of treatment and are unable to also work consistently on posttreatment care planning.
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Study Design Qualitative Research The evaluation of survivorship care plans can involve most types of health services research study designs. Because this is a new intervention, not actually in widespread use, there is a lot of qualitative work to be done to understand the current problems in, for example, coordination of follow-up, or what the most important barriers are to implementing survivorship care planning in practice.
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From page 271... ...
Such studies can take the form of before/after analyses of outcomes divided at the time of implementation of a survivorship care plan program. This type of research is susceptible to secular trends in outcome, however, which could result from increasing general awareness of cancer survivorship among patients and providers.
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From page 272... ...
· Question: In what areas do patients currently need more information: their diagnosis, previous treatment, plan for surveillance and monitoring, possible late effects, resources available, and/or who to turn to for different problems? o Study Design: Cross-sectional survey of survivors of all kinds to assess their current knowledge and desire for information in order to find which elements of the proposed survivorship care plan have the greatest gaps between desired and actual knowledge, and to identify subpopulations of patients in which certain needs are particularly prevalent.
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From page 273... ...
o Study Design: Prospective cohort study in which there is a base-line assessment of stage IIII breast cancer survivors' knowledge of these areas just after completion of primary therapy via an intervieweradministered survey. All subjects would then have a transition consultation and be given a written survivorship care plan.
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From page 274... ...
o Study design: Randomized controlled trial in which breast cancer patients completing adjuvant chemotherapy all receive a transition consultation and survivorship care plan, but half are invited to take part in an intensive diet and exercise intervention immediately, while the other half receive the same intervention 6 months later. Acceptance, compliance, and measures of dietary and exercise improvement would be the outcomes.
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From page 275... ...
The fifth recommendation in the IOM report calls for funded demonstration programs to test models of care, and the final recommendation advocates that public as well as private agencies such as insurance plans should increase their support of survivorship research and expand mechanisms for its conduct. This last recommendation is actually the first step in all of this, however, as establishing an evidence base for the creation and implementation of survivorship care plans through the type of research outlined herein is necessary to realize the IOM's vision in which attention to the transition from cancer survivor to cancer patient is accepted as a routine part of oncology practice.
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Key Terms
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