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Vulnerable Population Challenges in the Transformation of Cancer Care
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Seminars in Oncology Nursing, Vol 32, No 2 (May), 2016: pp 144-153
VULNERABLE POPULATION CHALLENGES IN THE TRANSFORMATION OF CANCER CARE KAREN MENESES, WENDY LANDIER, AND J. NICHOLAS DIONNE-ODOM OBJECTIVES: To consider current trends and future strategies that will bring about change in cancer care delivery for vulnerable populations.
DATA SOURCES: Institute of Medicine reports, literature review, clinical practice observations and experiences.
CONCLUSION: Vulnerable populations are older adults, both minorities and the underserved, children, and individuals at end of life. These groups pose unique challenges that require health system changes and innovative nursing models to assure access to patient-centered care in the future.
IMPLICATIONS FOR NURSING PRACTICE: In the future, attention to the needs of vulnerable populations, the growing aging cancer population and the improved outcomes in the pediatric and adolescent cancer population will all require new nursing services and models of care. System changes where nursing roles are critical to support the transition to earlier palliative care are projected.
KEY WORDS: cancer, older adults, minority and underserved population, health disparity, childhood cancer, palliative care.
Karen Meneses, PhD, RN, FAAN: Professor & Associate Dean for Research, School of Nursing, Co-Leader, Cancer Control and Population Sciences Program, Comprehensive Cancer Center, The University of Alabama at Birmingham, AL. Wendy Landier, PhD, RN: Associate Professor, School of Medicine, Institute for Cancer Survivorship Research and Outcomes, Associate Professor, School of Nursing, The University of Alabama at Birmingham, AL. J. Nicholas Dionne-Odom, PhD, RN, ACHPN: Postdoctoral Fellow, National Palliative Care
Research Center, Postdoctoral Fellow, School of Nursing, The University of Alabama at Birmingham, AL. Address correspondence to Karen Meneses, PhD, RN, FAAN, NB1013, School of Nursing, The University of Alabama at Birmingham, 1720 Second Avenue South, Birmingham, AL, 35294-1210. e-mail: menesesk@ uab.edu © 2016 Elsevier Inc. All rights reserved. 0749-2081 http://dx.doi.org/10.1016/j.soncn.2016.02.008
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n 2016, more than 1.68 million people are projected to be newly diagnosed with cancer in the United States (US)1 and they join a population of more than 14.5 million cancer survivors.1 The relative 5-year survival rate for all cancers has steadily increased from 49% during the period of 1975 to 1977, to 68% between 2004 and 2010.1 Thus, cancer survivors are an ever-growing population with a projected increase to nearly 19 million by 2024.2 However, accompanying these positive statistics is the 2013 Institute of Medicine (IOM) report, “Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis” that delivered a bleak and somber outlook citing that “barriers to achieving excellent care for all cancer patients remain daunting.”3, pg 19 These barriers include the growing demand for cancer care, complexity of the disease and cancer treatment, rising costs, and a shrinking workforce (Table 1). Overall, these barriers comprise a significant crisis in the delivery of cancer care. Unfortunately, those who are the least likely to receive high-quality care are the most vulnerable populations. They include the elderly, minorities and underserved, children, and individuals at the end of life. Why? There are several reasons. First, cancer demographics are changing. The population age 65 years and older constitute the largest number of newly diagnosed cases.4 Cancer is most common in older people, with 78% of all cancer diagnoses occurring in people ≥ 55 years of age.1 The population age ≥ 65 years make up 60% of cancer survivors.1 Their numbers are expected to
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double between 2010 and 2030, contributing to a 31% increase in cancer survivors.1 Therefore, the older population with unique care needs will comprise the largest number of those newly diagnosed with cancer, the largest number of cancer survivors, and the largest number of cancer deaths. Second, costs of cancer care are escalating, resulting in significant disparities in access to highquality cancer care. The Agency for Healthcare Research and Quality estimated that direct medical costs of cancer in 2011 were $88.7 billion, with 50% of costs for hospital outpatient or doctor visits, 35% for inpatient hospital stays, and 11% for prescription drugs.5 Out-of-pocket expenses for cancer survivors have likewise risen dramatically, thus creating financial toxicity.6,7 Costs of cancer treatment and subsequent care negatively impact the most vulnerable populations, particularly the uninsured.8 Ethnic minorities comprise the largest number of uninsured and are diagnosed with late-stage disease, incurring more extensive treatment that is more costly and often less successful.1 Third, the current system of health care impedes patient engagement. The health care system is not one that “supports all patients in making informed decisions that are consistent with their needs, values and preferences.”3, pg 35 Moreover, many clinicians lack expertise in patient-centered communication and shared decision-making, 3 making patient engagement for vulnerable populations a continual challenge. In 1990, the IOM first defined quality of care as “the degree to which health services for individuals and populations increase the likelihood of desired
TABLE 1. Barriers to Achieving High-Quality Cancer Care Barriers Growing need for cancer care Complexity of cancer and its treatment Rising costs of cancer care
Workforce shortages
Health care system impedes patient engagement
Data from Institute of Medicine.3
Reasons Older adult population increasing Major advances in understanding biology of cancer Precision medicine treatments $88.7 billion in 2011 50% of costs for hospital outpatient or doctor visits Rising out-of-pocket costs resulting in financial toxicity Limited geriatric cancer care providers Lack of integrated care delivery systems Few specialists trained in early palliative care Lack of patient-centered cancer focus Few strategies to improve patient self-management Lack of culturally sensitive care metrics
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health outcomes and are consistent with current professional knowledge.”9, pg 21 Then in 1999, the IOM expanded the definition of good quality care to include “providing patients with appropriate services in a technically competent manner, with good communication, shared decision making and cultural sensitivity.”10 Yet, attaining good quality care remains challenging for vulnerable cancer populations – those who are elderly, children, minorities and underserved, and individuals at the end of life. This article will apply these definitions to highlight the major challenges facing vulnerable cancer populations, explore current practice trends and new strategies that can potentially deliver highquality cancer care, and consider ways to engage vulnerable populations. Grounded in strategies identified in the most recent 2013 IOM quality report,3 this commentary is based on experiences in clinical practice and research and literature review. Contained within each individual section are observations and suggestions for improving the delivery of high-quality cancer care.
MULTIDIMENSIONAL CHALLENGES IN OUR AGING POPULATION WITH CANCER The US population is aging, and the aging population is getting older.1,11 Census data project that by 2030, 20% of our population will be ≥ age 65. By 2050, 21% of the aging population will be age 85 and older. Older adults with cancer have unique characteristics, such as altered physiology, functional impairment, and comorbidities.12 Older adults may also have preferences or goals of cancer treatment that may not be congruent with their oncology providers. For example, older adults may choose to forego curative treatment when they learn that functional impairment and cognitive decline may increase as a result of therapy.13 Puts and colleagues13 conducted a systematic review of factors influencing older adults’ decisions to either accept or forego cancer treatment. Factors affecting older adults’ treatment decision-making were: comorbidity, life expectancy, and treatment tolerability. Factors influencing treatment acceptance included: the will to live, family support, and physician trust, communication and recommendation.14 Considerations to decline treatment were related to support needs, such as transportation and fear of becoming a burden to loved ones. Overall, quality was deemed more important than extended
quantity. In addition, quality-of-life factors such as social support systems, impairment, cognition, and finance considerations contributed to treatment decision-making among older adults.14 Cancer treatments may cause unique toxicities for older adult patients because of co-morbidities. In addition, reduced hepatic and renal function are common physiologic changes in older adults and can impact optimal chemotherapy dosing. 15 However, limited treatment data are available because altered hepatic and renal function often preclude older adults with cancer from participating in clinical trials. One important example of attention to tailored therapy for older cancer patients is a recently published comprehensive review of best practices for radiation therapy [RT] for older adults by the International Society of Geriatric Oncology Radiotherapy Task Force.16 The Task Force noted that conformal RT leads to improved treatment outcomes in non-small cell lung cancer; short treatment schedules of hypofractionated RT can be considered for older women with breast cancer that do not require lymph node radiation; and involvedfield RT may be a viable option for older patients with advanced Hodgkin’s’ lymphoma. Likewise, intensity-modulated RT has been adapted in the management of prostate cancer. This specialized treatment planning and radiation delivery has also led to reduced toxicity from treatment. Taken together, radiation research focused on reducing treatment morbidity among older adults has led to improved control of disease while maintaining quality of life.16 Older adults are also at unique risk of delirium and frailty, especially when hospitalized. Delirium contributes to functional and cognitive decline, and is associated with increased length of hospital stay and higher mortality,16 while frailty results in unintentional weight loss, exhaustion, weakness, slowness and low physical activity.17 For the geriatric cancer patient, assessment of delirium and frailty is vital because these conditions can highly influence decisions as to whether to start cancer treatment, change course of treatment, and/ or end therapy. To deliver high-quality cancer care in the future, much work is needed to develop tailored interventions and services for this large, growing population of older adults with cancer. First, as recommended by the IOM, a comprehensive geriatric assessment specifically geared toward the needs of older adults should be routinely conducted.3 Such an assessment evaluates physiological changes, functional
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status, comorbidity, cognition, psychological status, social support and functioning, nutrition, and polypharmacy.18 These factors have been shown to predict morbidity and mortality in the older adult population.19 Second, models of care focused on the needs of the elderly should be considered. For example, the Transitional Care Model [TCM] developed by Naylor et al.,20 is an evidence-based approach to address the needs of chronically ill older adults that has led to improved outcomes in continuity of care. In the essential elements of the TCM, advanced practice nurses are the primary coordinators of care to assure consistency between acute and chronic episodes of illness. The TCM consists of in-hospital assessment, home visits, telephone support, and continuity of care. The TCM is patient-centered, requiring active engagement of patients, families, and caregivers, and early identification of problems. Further, the TCM is a multidisciplinary approach characterized by collaboration and communication.20 Third, the Oncology Nursing Society has issued two specific policy statements: “Access to Quality Cancer Care” and the “Impact of the Nursing Workforce Issues on Quality Cancer Care.”21 These policy statements emphasize capacity-building needs in nursing specialties and are critically important for the specialty of oncology nursing to build capacity in caring for older adults with cancer. Taken together, both these reports offer tremendous opportunities to improve care in the areas of patientcentered decision making, geriatric assessment, elder caregiving, and specialized management of treatment and its side effects.
FACING CANCER HEALTH DISPARITIES AND INEQUITY To date, the gains in improved survival after cancer diagnosis and treatment have not been equitable across populations.1,10 Specifically, racial and ethnic minorities and the medically underserved populations have historically presented with later stage at cancer diagnosis and poorer survival after end of treatment.3 Yet, cancer incidence and death rates show considerable variation between and within racial and ethnic groups.22 African Americans have higher mortality compared with whites,22 largely related to late stage of disease at diagnosis (particularly in cancers of the uterus, cervix, breast
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and oral cavity).1 African American men have the highest overall incidence and death rates compared with other groups, including non-Hispanic whites, Asian/Pacific islanders, American Indian/ Alaskan Natives and Hispanics.1 There are multiple factors that contribute to racial and ethnic disparities. These differences include: 1) genetic, behavioral, and social differences in risk factors; and 2) barriers to high-quality health care, receipt of timely cancer screening and early detection, and prompt diagnosis and treatment. Social determinants of health that contribute to racial and ethnic disparities are numerous. For example, poverty impedes access to high-quality health care.1 Problems in patient-provider communication contributes to disparities in treatment outcomes. Cultural beliefs about cancer fatalism can also hinder patients and families from seeking answers to their concerns.22 Further, social position, economic status, culture and environment are critical determinants of health in cancer, who develops and survives cancer, and who has better quality of life after treatment (see Table 2).1 To improve access to high-quality cancer care for minority and underserved cancer patients, patient navigation represents one of the first successful models. Patient navigation is defined as a process by which an individual, called a patient navigator, guides patients with suspicious findings through and around barriers in the complex cancer care system to help ensure timely diagnosis and treatment.23 In a now classic report, Freeman23 described the first Patient Navigation Program that was established in 1990 at Harlem Hospital. Its purpose was to reduce barriers to access and resulted in improve overall mortality and morbidity among minority women with breast cancer.23 Freeman’s initial success with patient navigation helped spur federal support for patient navigation research and demonstration programs across the country to reduce disparities in access to quality cancer care among minority and lowincome populations. From its initial success, patient navigation models have been developed to improve timely cancer screening and early detection.24,25 Today, patient navigation is an accepted model of care across health care systems in the US. Cancer patient navigation programs can include both nurse and lay personnel who are trained to provide patient-centered and individualized care. Navigators provide continuity to help patients improve access to cancer and treatment and receive appropriate care across the cancer continuum.26,27
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TABLE 2. Vulnerable Populations and Challenges in the Transformation of Care Vulnerable Population
Rationale
Challenges
Older population (≥65 years of age)
Numbers expected to double by 2030 Largest number of newly diagnosed cancer cases Comprise 60% of all cancer survivors Largest number of cancer deaths
Racial and ethnic minorities and the underserved cancer population
Present with later stage of cancer diagnosis Poorer survival after end of cancer treatment Genetic, behavioral and social differences in cancer risk factors Wide spectrum of cultural beliefs about cancer
Childhood cancer survivors
Improvement in long-term survival 5-year survival approximately 83% Transformational evidence-based practice and precision medicine High symptom burden Significant distress for patients and families Need for palliation of symptoms to maximize quality of life
Altered physiology Functional impairment Cognitive decline Comorbidity Preferences and goals of treatment may be incongruent with cancer care provider Decision-making may be impaired when hospitalized because of delirium and frailty Complex care with few geriatric cancer care providers Dire need for focused research in geriatric oncology Barriers to timely receipt of cancer screening and early detection Barriers to early diagnosis and treatment Poverty Difficulties with patient-provider communication Financial toxicity among cancer survivors Large-scale care models beyond patient navigation need study Documenting impact of nurse navigation on patient-centered outcomes Adapting evidence-based programs for cultural sensitivity Advance and improve symptom science Tailor cancer treatment to reduce long-term complications
Patients at the end of life
Tan and colleagues26 identified the experiences of adult cancer patients who participated in patient navigation and examined how patient navigators had an impact on care. The investigators found that “empowerment” of patients was the primary impact. Empowerment was classified across three major categories: 1) emotional empowerment focusing on the navigator’s presence at key points during the cancer continuum to remain accessible; 2) knowledge empowerment focusing on ways to help manage patient expectations and needs; and 3) systems empowerment where navigators bridged gaps to ensure continuity of care. In the future, additional evaluation and further development of patient navigation is needed to insure its impact on high-quality cancer care for minority and underserved populations with cancer. First, while patient navigation has shown improvement in access to quality cancer care, there are no published studies demonstrating the effect of patient
Clinical practice has not kept pace with evidence for earlier palliative care Lack of specialists trained in palliative care Significant caregiver burden
navigation on patient satisfaction with cancerrelated care.28,29 Wells and colleagues28 evaluated more than 2,000 patients that were assigned to one of two groups: patient navigation or usual care, across eight Patient Navigator Research program sites. Overall, patients reported high satisfaction with diagnostic care and cancer treatment. Yet, investigators found no statistically significant difference in satisfaction with care between the navigated and non-navigated patients. Likewise, Post and colleagues29 found no difference in outcomes between navigated and non-navigated patients. Second, delineating “who” is the patient navigator is vital. Current terminology is vague and confusing with regards to distinguishing whether the navigator is a nurse navigator or lay navigator. While both roles are related, there are distinct responsibilities. Delineating the roles, particularly of oncology nurse navigators, is critical. While many patient navigation models emphasize the role
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of lay navigators, such models may not completely describe the “depth and breadth of potential outcomes through oncology nurse navigator interventions” as identified by Crane-Okada.30 Third, research into the impact of nurse navigation on access to cancer care, reduced time to treatment, and satisfaction with care is needed. A comprehensive review by Crane-Okada30 underscored the critical need to assess the impact of Patient Navigation by Oncology Nurses (PNON) on patient outcomes. To date, two reviews of PNON have been published. The first review by Case31 identified 18 studies using a PNON with specific descriptions of role implementation and the outcomes of patient satisfaction, support and continuity of care. The second, more recent review of PNON by Crane-Okada, identified 14 additional studies of PNON across the continuum of cancer (eg, screening, early detection, diagnosis, staging, treatment, clinical trials, survivorship, and surveillance).30 The major outcomes of the PNON role were reducing time from diagnosis through treatment, facilitating continuity of care, promoting patient and family empowerment, promoting patient satisfaction, active coping and supportive care, and activating patient self-management. Of the 14 PNON studies, three were international studies conducted in Canada, Korea, and Denmark, thus emphasizing the global reach of PNON across different health systems. Areas in which PNONs can take the lead are in conducting research focused on the evaluation of the effectiveness of patient navigation on patient satisfaction with care,9 differences in time from access to early treatment, increasing minority enrollment into cancer clinical trials through patient navigation in the community,10 and survivorship navigation. In addition to patient navigation models as a method to address disparities among populations, the IOM emphasized that engaged patients must be at the center of high-quality cancer care. Thus, disseminating and adopting evidence-based solutions for our minority and underserved populations is vital to delivering high-quality cancer care. Fortunately, there are many evidence-based interventions supported by the National Institutes of Health that are ready for dissemination and implementation. Numerous evidence-based programs are located on the National Cancer Institute’s Research Tested Intervention Programs website located at http://rtips .cancer.gov/rtips/index.do. Research Tested Intervention Programs is a searchable database of cancer control interventions
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and program materials designed to provide program planners and public health practitioners easy and immediate access to research-tested materials, including those evaluated in underserved populations. The continued training and mentoring of young minority clinicians and scientists dedicated to eliminating health disparities should be sustained. Professional nursing and specialty organizations should consider modeling health disparities programs after successful and sustained programs, such as the Komen Health Disparities Training Program,32 where the enlarging science of health disparities includes investigators from basic, translational, clinical, and community backgrounds.
CAPITALIZING ON THE ADVANCES IN CHILDHOOD CANCER Unlike the uneven progress in delivering highquality cancer care to our aging population, substantial progress has been made over the years in the treatment of most childhood cancers. The 5-year relative survival rate for all childhood cancers combined has now reached 83%.33 To provide optimal care to children with cancer in an environment of rapid scientific advances and complex treatment regimens, the role of the pediatric oncology nurse continues to evolve. Thus, the challenge going forward is a positive one for oncology nursing that includes the acquisition of knowledge relevant to evidence-based practice (EBP), precision medicine, symptom science, and cancer survivorship. EBP provides the rationale for informed nursing care in pediatric oncology and can be transformative, as clinicians integrate the best available evidence in designing care for patients and families.33 EBP allows nurses to question why things are done the way they are, to determine whether there is evidence to support current practices, and when necessary, to change nursing practices to align with the evidence. EBP is also a significant force in identifying gaps in knowledge regarding care practices, which can then be addressed through formal research studies developed by nurse scientists. Precision medicine is clearly transforming the field of oncology. In pediatric oncology, genetically targeted therapy has been instrumental in significantly improving survival in high-risk
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neuroblastoma, one of the most difficult-to-treat childhood cancers.34 Early promising results of genetically targeted therapy in other childhood cancers, including Philadelphia chromosome positive 35 and relapsed acute lymphoblastic leukemia36 are providing hope for patients who previously had limited therapeutic options. With these successes come new challenges for nurses. It is critical to adapt current practices to meet the requirements of new, complex treatment regimens, manage the complications associated with them (eg, cytokine storm), provide anticipatory guidance to patients and families regarding common side effects, and importantly, counsel patients and families regarding the home administration of oral targeted therapies. Symptom science continues to evolve within pediatric oncology and promises to offer significant opportunity for future integration with personalized medicine.37 As genetic profiling increasingly allows identification of patients that are genetically susceptible to the adverse effects of specific agents used in treatment for pediatric cancers,38 nurses will be on the forefront of preventing, rather than treating symptoms, and thus will contribute to the reduction in illness-related distress associated with cancer treatment in children. Some current and future considerations are posed to deliver high-quality cancer care for children with cancer. First, as cure rates for childhood cancers continue to improve, the systematic measurement of symptoms related to specific cancer therapies and the association of those symptoms with quality of life will promote the opportunity for informed selection between therapeutic options that are equivalent in efficacy, but with differing side effect profiles. Second, nurses have long been leaders in providing survivorship care for children with cancer.39 As more and more children become childhood cancer survivors, the importance of taking the longterm view and tailoring therapy to reduce the risk for long-term complications assumes even greater importance. For example, as assistive reproductive technology techniques become more widely available, successful fertility preservation for larger numbers of young individuals can become a reality. Third, envisioning a healthy future for each and every pediatric oncology patient at diagnosis and using emerging tools to tailor therapy to individual patients has the potential to transform the goals of care from one focused solely on cure to an expectation for high-quality long-term survival.
Working as partners in transforming the health care system, nurses can contribute significantly toward a future that ensures improved quality of survival for pediatric oncology patients.
END OF LIFE AND THE EMERGENCE OF EARLY CONCURRENT PALLIATIVE CARE The delivery of high-quality cancer care makes timely referral to palliative care a necessity, not an option. Patients at end of life and their families experience high symptom burden on a daily basis, resulting in physical, psychosocial, and spiritual distress.40,41 The high symptom burden is why this population of patients is considered a vulnerable population in need of focused and specialized approaches. With recent advances in understanding cancer biology and the emergence of new targeted therapies, the length of time individuals can live with advanced disease and the concomitant symptom burden has increased from weeks to months to years.42,43 While increased length of life is a marker of success for these advances, less attention has been given to ensuring that longer survival is complemented with the palliation of symptoms to maximize both quantity and quality of life. To address this problem, new models of care that simultaneously deliver both standard oncology care and specialist palliative care have been developed and tested over the past decade. These new models are known as early concurrent palliative care. The Center to Advance Palliative Care defines palliative care as “. . . specialized medical care for people living with serious illness. It focuses on providing relief from the symptoms and stresses of serious illness – whatever the diagnosis.”44 Palliative care is delivered by an interdisciplinary team of physicians, nurses, social workers, and other specialists that work together with the patient’s primary oncology providers to insure an extra layer of support.44 Palliative care has been traditionally viewed as tantamount to hospice, and unfortunately end-of-life care was called upon only in the last days to weeks of life. This situation remains a reality, even for institutions that have robust specialist palliative care teams.45,46 Hence, efforts are still needed to move palliative care upstream earlier in the cancer disease trajectory. The American Society of Clinical Oncology issued a “Provisional Clinical Opinion” in 201247 and
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strongly recommended that specialist palliative care be integrated early, at the time of advanced cancer diagnosis, and delivered alongside standard oncology care regardless of whether the goal of care is cure or comfort. The clinical opinion resulted from strong evidence generated over the past decade from a number of high-quality randomized controlled trials that clearly demonstrated numerous benefits of early concurrent outpatient palliative care delivered near the time of advanced cancer diagnosis.48-55 Benefits observed in the trials included: improvement in patient and caregiver depression, improved patient quality of life, lower caregiver burden, higher patient survival, higher hospice use, less aggressive care, and higher patient and family satisfaction.48-55 Three of the most notable trials in early concurrent outpatient palliative care involve the central role of specialist palliative care nurses. In a clinical trial by Bakitas et al.,49 322 patients within 8 to 12 weeks of diagnosis with advanced lung, gastrointestinal, genitourinary, or breast cancer were randomized to receive either usual care or an advanced practice nurse-led telephonic coaching intervention. The intervention (Project ENABLE II: Educated, Nurture, Advise, Before Life Ends) consisted of four structured psychoeducational phone sessions that addressed topics including problem solving, symptom management, self-care, communication, and advanced care planning. Compared with usual care, the intervention group participants had significantly lower depression and higher quality of life. No significant differences were observed in symptom intensity, resource use (ie, chemotherapy, radiation, hospital and intensive care unit days, emergency department visits, advance directive completion), and survival. In the second trial, Zimmermann and colleagues54 conducted a cluster randomized trial involving 24 medical oncology clinics and 461 patients with stage III/IV lung, gastrointestinal, genitourinary, gynecologic, or breast cancer with a 6- to 24-month prognosis that were randomized to either usual care or an early palliative care intervention. The intervention consisted of: one or more monthly outpatient clinic visits with a specialist palliative care physician and nurse who co-facilitated structured symptom and psychosocial assessments; telephone follow-up; and 24-hour on-call service. Compared with usual care, the intervention group participants experienced higher quality of life and higher care satisfaction. There were no differences
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in symptom severity and medical interaction problems. Finally, in an early versus delayed intervention study, Bakitas et al.50 and Dionne-Odom et al.51 randomized 207 patients along with 122 of their family caregivers to receive an advanced practice nurseled telephonic coaching intervention (Project ENABLE III). Patients received six structured psychoeducational phone sessions; an outpatient palliative care consult; and monthly follow-up.51 Family caregivers received three structured psychoeducational phone sessions from a separate nurse coach; monthly follow-up; and a bereavement call in the circumstance of the care recipient’s death. Topics in the structured sessions included problem solving, self-care, symptom management, communication, decision-making, and advance care planning. Compared with delayed group participants, early group patients had improved 1-year survival and early group caregivers had lower depressed mood and stress burden. There were no differences in patient quality of life, patient depression, symptom impact, patient resources use, caregiver quality of life, caregiver objective burden, and caregiver demand burden. Together, these trials lend strong evidence that models of early concurrent outpatient palliative care that include nurses as active members of the interdisciplinary team have a positive impact on patient and family caregiver outcomes. While this is encouraging, stronger evidence is needed that clearly demonstrates the value of palliative care nurses. How can the delivery of high-quality cancer care be improved with patients at end of life and their families, a highly vulnerable population? First, better understanding is needed of what components of early concurrent palliative care lead to improvements in outcomes and, specifically, what components were “active” under the purview of specialist palliative care nursing. Second, the role and impact of clinical nurses who deliver palliative care must be ascertained. Because there are not enough specialist palliative care nurses for every patient with advanced cancer, disseminating such models may not be possible in every health care system. Thus, for patients with advanced cancer to benefit as much as possible, identifying the basic palliative care skills that can be delivered by clinical nurses is essential. Expanding the team for palliative care could begin to address challenges for this vulnerable population.
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Third, the optimal timing and intensity of palliative care nursing services have yet to be determined. Questions remain about how early, how often, and for how long palliative care nurses should be directly involved with the care of advanced cancer patients and their family caregivers. Examining these questions is essential for substantiating the value and role of nursing in future models of early concurrent palliative care.
CONCLUSION Vulnerable populations include the elderly, minorities, underserved, children, and patients at end of life. Delivering high-quality cancer care to, for, and with our vulnerable populations has posed unique and major challenges within a system already in crisis. Cancer demographics tilt toward an aging population and argue for aggressive efforts in preparing geriatric oncology practitioners and
research scientists. Training the next generation of cancer health disparities practitioners and scientists is progressing but much more is needed. Empowering patients and families through cancer self-management and patient centered care strategies are crucial. Exciting outcomes in the childhood cancer survivorship population thrust new responsibilities for pediatric nurses. System changes that allow for the transition to earlier palliative care with the central role of nursing and patient-centered care are projected. Observations and suggestions to tackle the problems and achieve high-quality cancer care are posed to engender thoughtful and strategic discussion.
ACKNOWLEDGMENT The authors thank Angel Bailey and Sarita Womack for their assistance in preparation of this manuscript.
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11. Yancik R. Population aging and cancer: a cross-national concern. Cancer J 2005;11:437-441. 12. Li D, deGlas NA, Hurria A. Cancer and aging: general principles, biology, and geriatric assessment. Clin Geriatr Med 2016;32:1-15. 13. Puts MT, Papscott B, Fitch M, et al. A systematic review of factors influencing older adults’ decision to accept or decline cancer treatment. Cancer Treat Rev 2015;41:197-215. 14. Walko C, McLeod H. Personalizing medicine in geriatric oncology. J Clin Oncol 2014;32:2581-2586. 15. Kukler I, Audisio R, Belkacemi Y, et al. Review of current best practice and priorities for research in radiation oncology for elderly patients with cancer: the International Society of Geriatric Oncology (SIOG) task force. Ann Oncol 2014;25:21342146. 16. Wedding U. Report on the 14th Conference of the International Society of Geriatric Oncology. Future Oncol 2015;11:893-895. 17. Fried LP, Tangen CM, Walston J Cardiovascular Health Study Collaborative Research Group. Frailty in older adults: evidence for a phenotype. J Gerontol A Biol Sci Med Sci 2001;56:M146-M156. 18. Hurria A, Cirrincoine CT, Muss HB, et al. Implementing a geriatric assessmentt in cooperative group clinical trials: CALGB 360401. J Clin Oncol 2011;29:1290-1296. 19. Inouye S, Peduzzi P, Robison T, et al. Importance of functional measures in predicting mortality among older hospitalized patients. JAMA 1998;279:1187-1193. 20. Naylor MD, Bowles KH, McCauley KM, et al. High value transitional care: translation of research into practice. J Eval Clin Pract 2013;19:727-733. 21. Oncology Nursing Society. Position Statements. Access to quality cancer care. Available at: https://www.ons.org/
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advocacy-policy/positions/policy/access. Impact of the nursing workforce on quality cancer care. Available at: https:// www.ons.org/advocacy-policy/positions/policy/nursing-workforceissues. (accessed January 26, 2016). 22. Kagawa-Singer M, Dadi AV, Yu MC, et al. Cancer, culture, and health disparities: time to chart a new course? CA Cancer J Clin 2010;60:12-39. 23. Freeman HP. The impact of clinical trial protocols on patient care systems in a large city hospital. Access for the socially disadvantaged. Cancer 1993;72:2834-2838. 24. Freeman HP. Patient navigation: a community centered approach to reducing cancer mortality. J Cancer Educ 2006;21(Suppl):S11-S14. 25. Jean-Pierre P. Understanding the processes of patient navigation to reduce disparities in cancer care: perspectives of trained navigators from the field. J Cancer Educ 2011;26:111-120. 26. Tan CH, Wilson S, McConigley R. Experiences of cancer patients in a patient navigation program: a qualitative sytematic review. JBI Database System Rev Implement Rep 2015;13:136168. 27. Phillips S, Nonzee N, Tom L, et al. Patient navigators’ reflections on the navigator-patient relationship. J Cancer Educ 2014;29:337-344. 28. Wells KJ, Winters PC, Jean-Pierre P, et al. Effect of patient navigation on satisfaction with cancer-related care. Support Care Cancer 2016;24:1729-1753. 29. Post DM, McAlearney AS, Young GS, et al. Post effects of patient navigation on patient satisfaction outcomes. J Cancer Educ 2015;30:728-735. 30. Crane-Okada R. Evaluation and outcome measures in patient navigation. Semin Oncol Nurs 2013;29:128-140. 31. Case M. Oncology nurse navigator. Clin J Oncol Nurs 2011;15:33-40. 32. Komen Graduate Training in Disparities Research Grants. Available at: http://ww5.komen.org/uploadedFiles/Content/ ResearchGrants/GrantPrograms/FY15%20RFA%20GTDR %20FINAL.pdf. (accessed January 26, 2016). 33. Rodgers C, Withycombe JS, Hockenberry MJ. Evidencebased practice projects in pediatric oncology nursing. J Pediatr Oncol Nurs 2014;31:182-184. 34. Yu AL, Gilman AL, Ozkaynak MF. Anti-GD2 antibody with GM-CSF, interleukin-2, and isotretinoin for neuroblastoma. N Engl J Med 2010;363:1324-1334. 35. Schultz KR, Carroll A, Heerema NA, Children’s Oncology Group. Long-term follow-up of imatinib in pediatric Philadelphia chromosome-positive acute lymphoblastic leukemia: Children’s Oncology Group study AALL0031. Leukemia 2014;28:1467-1471. 36. Maude SL, Frey N, Shaw PA. Chimeric antigen receptor T cells for sustained remissions in leukemia. N Engl J Med 2014;371:1507-1517. 37. Rodgers CC, Hooke MC, Hockenberry MJ. Symptom clusters in children. Curr Opin Support Palliat Care 2013;7:67-72. 38. Reyes-Gibby CC, Wu X, Spit M. Molecular epidemiology, cancer-related symptoms, and cytokines pathway. Lancet Oncol 2008;9:777-785. 39. Hobbie WL, Hollen PJ. Pediatric nurse practitioners specializing with survivors of childhood cancer. J Pediatr Health Care 1993;7:24-30.
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40. Gilbertson-White S, Aouizerat BE, Jahan T, et al. A review of the literature on multiple symptoms, their predictors, and associated outcomes in patients with advanced cancer. Palliat Support Care 2011;9:81-102. 41. Hudson PL, Thomas K, Trauer T, Remedios C, Clarke D. Psychological and social profile of family caregivers on commencement of palliative care. J Pain Symptom Manage 2011;41:522-534. 42. Chan BA, Hughes BG. Targeted therapy for non-small cell lung cancer: current standards and the promise of the future. Transl Lung Cancer Res 2015;4:36-54. 43. Finnberg N, Gokare P, El-Deiry WS. Novel and emerging targeted therapies of colorectal cancer. Curr Clin Pharmacol 2015;10:279-298. 44. Center to Advance Palliative Care. About palliative care. 2015. Available at: http://www.capc.org/about/palliative-care/. (accessed December 10, 2015). 45. Smith CB, Nelson JE, Berman AR. Lung cancer physicians’ referral practices for palliative care consultation. Ann Oncol 2012;23:382-387. 46. Wentlandt K, Krzyzanowska MK, Swami N. Referral practices of oncologists to specialized palliative care. J Clin Oncol 2012;30:4380-4386. 47. Smith T, Temin S, Alesi EJ. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol 2012;30:880-887. 48. Davis MP, Temel JS, Balboni T, Glare P. A review of the trials which examine early integration of outpatient and home palliative care for patients with serious illnesses. Ann Palliat Med 2015;4:99-121. 49. Bakitas M, Lyons KD, Hegel MT. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA 2009;302:741-749. 50. Bakitas M, Tosteson T, Li Z. Early versus delayed initiation of concurrent palliative oncology care: patient outcomes in the ENABLE III randomized controlled trial. J Clin Oncol 2015;33:1438-1445. 51. Dionne-Odom JN, Azuero A, Lyons KD. Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: outcomes from the ENABLE III randomized controlled trial. J Clin Oncol 2015;33:14461452. 52. Greer JA, Pirl WF, Jackson VA. Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non-small-cell lung cancer. J Clin Oncol 2012;30:394400. 53. Temel JS, Greer JA, Muzikansky A. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733-742. 54. Zimmermann C, Swami N, Krzyzanowska M. Early palliative care for patients with advanced cancer: a cluster-randomized controlled trial. Lancet 2014;383:17211730. 55. Steinhauser KE, Alexander SC, Byock IR. Do preparation and life completion discussions improve functioning and quality of life in seriously ill patients? Pilot randomized control trial. J Palliat Med 2008;11:1234-1240.
Seminars in Oncology Nursing, Vol 32, No 2 (May), 2016: pp 144-153
VULNERABLE POPULATION CHALLENGES IN THE TRANSFORMATION OF CANCER CARE KAREN MENESES, WENDY LANDIER, AND J. NICHOLAS DIONNE-ODOM OBJECTIVES: To consider current trends and future strategies that will bring about change in cancer care delivery for vulnerable populations.
DATA SOURCES: Institute of Medicine reports, literature review, clinical practice observations and experiences.
CONCLUSION: Vulnerable populations are older adults, both minorities and the underserved, children, and individuals at end of life. These groups pose unique challenges that require health system changes and innovative nursing models to assure access to patient-centered care in the future.
IMPLICATIONS FOR NURSING PRACTICE: In the future, attention to the needs of vulnerable populations, the growing aging cancer population and the improved outcomes in the pediatric and adolescent cancer population will all require new nursing services and models of care. System changes where nursing roles are critical to support the transition to earlier palliative care are projected.
KEY WORDS: cancer, older adults, minority and underserved population, health disparity, childhood cancer, palliative care.
Karen Meneses, PhD, RN, FAAN: Professor & Associate Dean for Research, School of Nursing, Co-Leader, Cancer Control and Population Sciences Program, Comprehensive Cancer Center, The University of Alabama at Birmingham, AL. Wendy Landier, PhD, RN: Associate Professor, School of Medicine, Institute for Cancer Survivorship Research and Outcomes, Associate Professor, School of Nursing, The University of Alabama at Birmingham, AL. J. Nicholas Dionne-Odom, PhD, RN, ACHPN: Postdoctoral Fellow, National Palliative Care
Research Center, Postdoctoral Fellow, School of Nursing, The University of Alabama at Birmingham, AL. Address correspondence to Karen Meneses, PhD, RN, FAAN, NB1013, School of Nursing, The University of Alabama at Birmingham, 1720 Second Avenue South, Birmingham, AL, 35294-1210. e-mail: menesesk@ uab.edu © 2016 Elsevier Inc. All rights reserved. 0749-2081 http://dx.doi.org/10.1016/j.soncn.2016.02.008
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I
n 2016, more than 1.68 million people are projected to be newly diagnosed with cancer in the United States (US)1 and they join a population of more than 14.5 million cancer survivors.1 The relative 5-year survival rate for all cancers has steadily increased from 49% during the period of 1975 to 1977, to 68% between 2004 and 2010.1 Thus, cancer survivors are an ever-growing population with a projected increase to nearly 19 million by 2024.2 However, accompanying these positive statistics is the 2013 Institute of Medicine (IOM) report, “Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis” that delivered a bleak and somber outlook citing that “barriers to achieving excellent care for all cancer patients remain daunting.”3, pg 19 These barriers include the growing demand for cancer care, complexity of the disease and cancer treatment, rising costs, and a shrinking workforce (Table 1). Overall, these barriers comprise a significant crisis in the delivery of cancer care. Unfortunately, those who are the least likely to receive high-quality care are the most vulnerable populations. They include the elderly, minorities and underserved, children, and individuals at the end of life. Why? There are several reasons. First, cancer demographics are changing. The population age 65 years and older constitute the largest number of newly diagnosed cases.4 Cancer is most common in older people, with 78% of all cancer diagnoses occurring in people ≥ 55 years of age.1 The population age ≥ 65 years make up 60% of cancer survivors.1 Their numbers are expected to
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double between 2010 and 2030, contributing to a 31% increase in cancer survivors.1 Therefore, the older population with unique care needs will comprise the largest number of those newly diagnosed with cancer, the largest number of cancer survivors, and the largest number of cancer deaths. Second, costs of cancer care are escalating, resulting in significant disparities in access to highquality cancer care. The Agency for Healthcare Research and Quality estimated that direct medical costs of cancer in 2011 were $88.7 billion, with 50% of costs for hospital outpatient or doctor visits, 35% for inpatient hospital stays, and 11% for prescription drugs.5 Out-of-pocket expenses for cancer survivors have likewise risen dramatically, thus creating financial toxicity.6,7 Costs of cancer treatment and subsequent care negatively impact the most vulnerable populations, particularly the uninsured.8 Ethnic minorities comprise the largest number of uninsured and are diagnosed with late-stage disease, incurring more extensive treatment that is more costly and often less successful.1 Third, the current system of health care impedes patient engagement. The health care system is not one that “supports all patients in making informed decisions that are consistent with their needs, values and preferences.”3, pg 35 Moreover, many clinicians lack expertise in patient-centered communication and shared decision-making, 3 making patient engagement for vulnerable populations a continual challenge. In 1990, the IOM first defined quality of care as “the degree to which health services for individuals and populations increase the likelihood of desired
TABLE 1. Barriers to Achieving High-Quality Cancer Care Barriers Growing need for cancer care Complexity of cancer and its treatment Rising costs of cancer care
Workforce shortages
Health care system impedes patient engagement
Data from Institute of Medicine.3
Reasons Older adult population increasing Major advances in understanding biology of cancer Precision medicine treatments $88.7 billion in 2011 50% of costs for hospital outpatient or doctor visits Rising out-of-pocket costs resulting in financial toxicity Limited geriatric cancer care providers Lack of integrated care delivery systems Few specialists trained in early palliative care Lack of patient-centered cancer focus Few strategies to improve patient self-management Lack of culturally sensitive care metrics
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health outcomes and are consistent with current professional knowledge.”9, pg 21 Then in 1999, the IOM expanded the definition of good quality care to include “providing patients with appropriate services in a technically competent manner, with good communication, shared decision making and cultural sensitivity.”10 Yet, attaining good quality care remains challenging for vulnerable cancer populations – those who are elderly, children, minorities and underserved, and individuals at the end of life. This article will apply these definitions to highlight the major challenges facing vulnerable cancer populations, explore current practice trends and new strategies that can potentially deliver highquality cancer care, and consider ways to engage vulnerable populations. Grounded in strategies identified in the most recent 2013 IOM quality report,3 this commentary is based on experiences in clinical practice and research and literature review. Contained within each individual section are observations and suggestions for improving the delivery of high-quality cancer care.
MULTIDIMENSIONAL CHALLENGES IN OUR AGING POPULATION WITH CANCER The US population is aging, and the aging population is getting older.1,11 Census data project that by 2030, 20% of our population will be ≥ age 65. By 2050, 21% of the aging population will be age 85 and older. Older adults with cancer have unique characteristics, such as altered physiology, functional impairment, and comorbidities.12 Older adults may also have preferences or goals of cancer treatment that may not be congruent with their oncology providers. For example, older adults may choose to forego curative treatment when they learn that functional impairment and cognitive decline may increase as a result of therapy.13 Puts and colleagues13 conducted a systematic review of factors influencing older adults’ decisions to either accept or forego cancer treatment. Factors affecting older adults’ treatment decision-making were: comorbidity, life expectancy, and treatment tolerability. Factors influencing treatment acceptance included: the will to live, family support, and physician trust, communication and recommendation.14 Considerations to decline treatment were related to support needs, such as transportation and fear of becoming a burden to loved ones. Overall, quality was deemed more important than extended
quantity. In addition, quality-of-life factors such as social support systems, impairment, cognition, and finance considerations contributed to treatment decision-making among older adults.14 Cancer treatments may cause unique toxicities for older adult patients because of co-morbidities. In addition, reduced hepatic and renal function are common physiologic changes in older adults and can impact optimal chemotherapy dosing. 15 However, limited treatment data are available because altered hepatic and renal function often preclude older adults with cancer from participating in clinical trials. One important example of attention to tailored therapy for older cancer patients is a recently published comprehensive review of best practices for radiation therapy [RT] for older adults by the International Society of Geriatric Oncology Radiotherapy Task Force.16 The Task Force noted that conformal RT leads to improved treatment outcomes in non-small cell lung cancer; short treatment schedules of hypofractionated RT can be considered for older women with breast cancer that do not require lymph node radiation; and involvedfield RT may be a viable option for older patients with advanced Hodgkin’s’ lymphoma. Likewise, intensity-modulated RT has been adapted in the management of prostate cancer. This specialized treatment planning and radiation delivery has also led to reduced toxicity from treatment. Taken together, radiation research focused on reducing treatment morbidity among older adults has led to improved control of disease while maintaining quality of life.16 Older adults are also at unique risk of delirium and frailty, especially when hospitalized. Delirium contributes to functional and cognitive decline, and is associated with increased length of hospital stay and higher mortality,16 while frailty results in unintentional weight loss, exhaustion, weakness, slowness and low physical activity.17 For the geriatric cancer patient, assessment of delirium and frailty is vital because these conditions can highly influence decisions as to whether to start cancer treatment, change course of treatment, and/ or end therapy. To deliver high-quality cancer care in the future, much work is needed to develop tailored interventions and services for this large, growing population of older adults with cancer. First, as recommended by the IOM, a comprehensive geriatric assessment specifically geared toward the needs of older adults should be routinely conducted.3 Such an assessment evaluates physiological changes, functional
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status, comorbidity, cognition, psychological status, social support and functioning, nutrition, and polypharmacy.18 These factors have been shown to predict morbidity and mortality in the older adult population.19 Second, models of care focused on the needs of the elderly should be considered. For example, the Transitional Care Model [TCM] developed by Naylor et al.,20 is an evidence-based approach to address the needs of chronically ill older adults that has led to improved outcomes in continuity of care. In the essential elements of the TCM, advanced practice nurses are the primary coordinators of care to assure consistency between acute and chronic episodes of illness. The TCM consists of in-hospital assessment, home visits, telephone support, and continuity of care. The TCM is patient-centered, requiring active engagement of patients, families, and caregivers, and early identification of problems. Further, the TCM is a multidisciplinary approach characterized by collaboration and communication.20 Third, the Oncology Nursing Society has issued two specific policy statements: “Access to Quality Cancer Care” and the “Impact of the Nursing Workforce Issues on Quality Cancer Care.”21 These policy statements emphasize capacity-building needs in nursing specialties and are critically important for the specialty of oncology nursing to build capacity in caring for older adults with cancer. Taken together, both these reports offer tremendous opportunities to improve care in the areas of patientcentered decision making, geriatric assessment, elder caregiving, and specialized management of treatment and its side effects.
FACING CANCER HEALTH DISPARITIES AND INEQUITY To date, the gains in improved survival after cancer diagnosis and treatment have not been equitable across populations.1,10 Specifically, racial and ethnic minorities and the medically underserved populations have historically presented with later stage at cancer diagnosis and poorer survival after end of treatment.3 Yet, cancer incidence and death rates show considerable variation between and within racial and ethnic groups.22 African Americans have higher mortality compared with whites,22 largely related to late stage of disease at diagnosis (particularly in cancers of the uterus, cervix, breast
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and oral cavity).1 African American men have the highest overall incidence and death rates compared with other groups, including non-Hispanic whites, Asian/Pacific islanders, American Indian/ Alaskan Natives and Hispanics.1 There are multiple factors that contribute to racial and ethnic disparities. These differences include: 1) genetic, behavioral, and social differences in risk factors; and 2) barriers to high-quality health care, receipt of timely cancer screening and early detection, and prompt diagnosis and treatment. Social determinants of health that contribute to racial and ethnic disparities are numerous. For example, poverty impedes access to high-quality health care.1 Problems in patient-provider communication contributes to disparities in treatment outcomes. Cultural beliefs about cancer fatalism can also hinder patients and families from seeking answers to their concerns.22 Further, social position, economic status, culture and environment are critical determinants of health in cancer, who develops and survives cancer, and who has better quality of life after treatment (see Table 2).1 To improve access to high-quality cancer care for minority and underserved cancer patients, patient navigation represents one of the first successful models. Patient navigation is defined as a process by which an individual, called a patient navigator, guides patients with suspicious findings through and around barriers in the complex cancer care system to help ensure timely diagnosis and treatment.23 In a now classic report, Freeman23 described the first Patient Navigation Program that was established in 1990 at Harlem Hospital. Its purpose was to reduce barriers to access and resulted in improve overall mortality and morbidity among minority women with breast cancer.23 Freeman’s initial success with patient navigation helped spur federal support for patient navigation research and demonstration programs across the country to reduce disparities in access to quality cancer care among minority and lowincome populations. From its initial success, patient navigation models have been developed to improve timely cancer screening and early detection.24,25 Today, patient navigation is an accepted model of care across health care systems in the US. Cancer patient navigation programs can include both nurse and lay personnel who are trained to provide patient-centered and individualized care. Navigators provide continuity to help patients improve access to cancer and treatment and receive appropriate care across the cancer continuum.26,27
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TABLE 2. Vulnerable Populations and Challenges in the Transformation of Care Vulnerable Population
Rationale
Challenges
Older population (≥65 years of age)
Numbers expected to double by 2030 Largest number of newly diagnosed cancer cases Comprise 60% of all cancer survivors Largest number of cancer deaths
Racial and ethnic minorities and the underserved cancer population
Present with later stage of cancer diagnosis Poorer survival after end of cancer treatment Genetic, behavioral and social differences in cancer risk factors Wide spectrum of cultural beliefs about cancer
Childhood cancer survivors
Improvement in long-term survival 5-year survival approximately 83% Transformational evidence-based practice and precision medicine High symptom burden Significant distress for patients and families Need for palliation of symptoms to maximize quality of life
Altered physiology Functional impairment Cognitive decline Comorbidity Preferences and goals of treatment may be incongruent with cancer care provider Decision-making may be impaired when hospitalized because of delirium and frailty Complex care with few geriatric cancer care providers Dire need for focused research in geriatric oncology Barriers to timely receipt of cancer screening and early detection Barriers to early diagnosis and treatment Poverty Difficulties with patient-provider communication Financial toxicity among cancer survivors Large-scale care models beyond patient navigation need study Documenting impact of nurse navigation on patient-centered outcomes Adapting evidence-based programs for cultural sensitivity Advance and improve symptom science Tailor cancer treatment to reduce long-term complications
Patients at the end of life
Tan and colleagues26 identified the experiences of adult cancer patients who participated in patient navigation and examined how patient navigators had an impact on care. The investigators found that “empowerment” of patients was the primary impact. Empowerment was classified across three major categories: 1) emotional empowerment focusing on the navigator’s presence at key points during the cancer continuum to remain accessible; 2) knowledge empowerment focusing on ways to help manage patient expectations and needs; and 3) systems empowerment where navigators bridged gaps to ensure continuity of care. In the future, additional evaluation and further development of patient navigation is needed to insure its impact on high-quality cancer care for minority and underserved populations with cancer. First, while patient navigation has shown improvement in access to quality cancer care, there are no published studies demonstrating the effect of patient
Clinical practice has not kept pace with evidence for earlier palliative care Lack of specialists trained in palliative care Significant caregiver burden
navigation on patient satisfaction with cancerrelated care.28,29 Wells and colleagues28 evaluated more than 2,000 patients that were assigned to one of two groups: patient navigation or usual care, across eight Patient Navigator Research program sites. Overall, patients reported high satisfaction with diagnostic care and cancer treatment. Yet, investigators found no statistically significant difference in satisfaction with care between the navigated and non-navigated patients. Likewise, Post and colleagues29 found no difference in outcomes between navigated and non-navigated patients. Second, delineating “who” is the patient navigator is vital. Current terminology is vague and confusing with regards to distinguishing whether the navigator is a nurse navigator or lay navigator. While both roles are related, there are distinct responsibilities. Delineating the roles, particularly of oncology nurse navigators, is critical. While many patient navigation models emphasize the role
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of lay navigators, such models may not completely describe the “depth and breadth of potential outcomes through oncology nurse navigator interventions” as identified by Crane-Okada.30 Third, research into the impact of nurse navigation on access to cancer care, reduced time to treatment, and satisfaction with care is needed. A comprehensive review by Crane-Okada30 underscored the critical need to assess the impact of Patient Navigation by Oncology Nurses (PNON) on patient outcomes. To date, two reviews of PNON have been published. The first review by Case31 identified 18 studies using a PNON with specific descriptions of role implementation and the outcomes of patient satisfaction, support and continuity of care. The second, more recent review of PNON by Crane-Okada, identified 14 additional studies of PNON across the continuum of cancer (eg, screening, early detection, diagnosis, staging, treatment, clinical trials, survivorship, and surveillance).30 The major outcomes of the PNON role were reducing time from diagnosis through treatment, facilitating continuity of care, promoting patient and family empowerment, promoting patient satisfaction, active coping and supportive care, and activating patient self-management. Of the 14 PNON studies, three were international studies conducted in Canada, Korea, and Denmark, thus emphasizing the global reach of PNON across different health systems. Areas in which PNONs can take the lead are in conducting research focused on the evaluation of the effectiveness of patient navigation on patient satisfaction with care,9 differences in time from access to early treatment, increasing minority enrollment into cancer clinical trials through patient navigation in the community,10 and survivorship navigation. In addition to patient navigation models as a method to address disparities among populations, the IOM emphasized that engaged patients must be at the center of high-quality cancer care. Thus, disseminating and adopting evidence-based solutions for our minority and underserved populations is vital to delivering high-quality cancer care. Fortunately, there are many evidence-based interventions supported by the National Institutes of Health that are ready for dissemination and implementation. Numerous evidence-based programs are located on the National Cancer Institute’s Research Tested Intervention Programs website located at http://rtips .cancer.gov/rtips/index.do. Research Tested Intervention Programs is a searchable database of cancer control interventions
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and program materials designed to provide program planners and public health practitioners easy and immediate access to research-tested materials, including those evaluated in underserved populations. The continued training and mentoring of young minority clinicians and scientists dedicated to eliminating health disparities should be sustained. Professional nursing and specialty organizations should consider modeling health disparities programs after successful and sustained programs, such as the Komen Health Disparities Training Program,32 where the enlarging science of health disparities includes investigators from basic, translational, clinical, and community backgrounds.
CAPITALIZING ON THE ADVANCES IN CHILDHOOD CANCER Unlike the uneven progress in delivering highquality cancer care to our aging population, substantial progress has been made over the years in the treatment of most childhood cancers. The 5-year relative survival rate for all childhood cancers combined has now reached 83%.33 To provide optimal care to children with cancer in an environment of rapid scientific advances and complex treatment regimens, the role of the pediatric oncology nurse continues to evolve. Thus, the challenge going forward is a positive one for oncology nursing that includes the acquisition of knowledge relevant to evidence-based practice (EBP), precision medicine, symptom science, and cancer survivorship. EBP provides the rationale for informed nursing care in pediatric oncology and can be transformative, as clinicians integrate the best available evidence in designing care for patients and families.33 EBP allows nurses to question why things are done the way they are, to determine whether there is evidence to support current practices, and when necessary, to change nursing practices to align with the evidence. EBP is also a significant force in identifying gaps in knowledge regarding care practices, which can then be addressed through formal research studies developed by nurse scientists. Precision medicine is clearly transforming the field of oncology. In pediatric oncology, genetically targeted therapy has been instrumental in significantly improving survival in high-risk
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neuroblastoma, one of the most difficult-to-treat childhood cancers.34 Early promising results of genetically targeted therapy in other childhood cancers, including Philadelphia chromosome positive 35 and relapsed acute lymphoblastic leukemia36 are providing hope for patients who previously had limited therapeutic options. With these successes come new challenges for nurses. It is critical to adapt current practices to meet the requirements of new, complex treatment regimens, manage the complications associated with them (eg, cytokine storm), provide anticipatory guidance to patients and families regarding common side effects, and importantly, counsel patients and families regarding the home administration of oral targeted therapies. Symptom science continues to evolve within pediatric oncology and promises to offer significant opportunity for future integration with personalized medicine.37 As genetic profiling increasingly allows identification of patients that are genetically susceptible to the adverse effects of specific agents used in treatment for pediatric cancers,38 nurses will be on the forefront of preventing, rather than treating symptoms, and thus will contribute to the reduction in illness-related distress associated with cancer treatment in children. Some current and future considerations are posed to deliver high-quality cancer care for children with cancer. First, as cure rates for childhood cancers continue to improve, the systematic measurement of symptoms related to specific cancer therapies and the association of those symptoms with quality of life will promote the opportunity for informed selection between therapeutic options that are equivalent in efficacy, but with differing side effect profiles. Second, nurses have long been leaders in providing survivorship care for children with cancer.39 As more and more children become childhood cancer survivors, the importance of taking the longterm view and tailoring therapy to reduce the risk for long-term complications assumes even greater importance. For example, as assistive reproductive technology techniques become more widely available, successful fertility preservation for larger numbers of young individuals can become a reality. Third, envisioning a healthy future for each and every pediatric oncology patient at diagnosis and using emerging tools to tailor therapy to individual patients has the potential to transform the goals of care from one focused solely on cure to an expectation for high-quality long-term survival.
Working as partners in transforming the health care system, nurses can contribute significantly toward a future that ensures improved quality of survival for pediatric oncology patients.
END OF LIFE AND THE EMERGENCE OF EARLY CONCURRENT PALLIATIVE CARE The delivery of high-quality cancer care makes timely referral to palliative care a necessity, not an option. Patients at end of life and their families experience high symptom burden on a daily basis, resulting in physical, psychosocial, and spiritual distress.40,41 The high symptom burden is why this population of patients is considered a vulnerable population in need of focused and specialized approaches. With recent advances in understanding cancer biology and the emergence of new targeted therapies, the length of time individuals can live with advanced disease and the concomitant symptom burden has increased from weeks to months to years.42,43 While increased length of life is a marker of success for these advances, less attention has been given to ensuring that longer survival is complemented with the palliation of symptoms to maximize both quantity and quality of life. To address this problem, new models of care that simultaneously deliver both standard oncology care and specialist palliative care have been developed and tested over the past decade. These new models are known as early concurrent palliative care. The Center to Advance Palliative Care defines palliative care as “. . . specialized medical care for people living with serious illness. It focuses on providing relief from the symptoms and stresses of serious illness – whatever the diagnosis.”44 Palliative care is delivered by an interdisciplinary team of physicians, nurses, social workers, and other specialists that work together with the patient’s primary oncology providers to insure an extra layer of support.44 Palliative care has been traditionally viewed as tantamount to hospice, and unfortunately end-of-life care was called upon only in the last days to weeks of life. This situation remains a reality, even for institutions that have robust specialist palliative care teams.45,46 Hence, efforts are still needed to move palliative care upstream earlier in the cancer disease trajectory. The American Society of Clinical Oncology issued a “Provisional Clinical Opinion” in 201247 and
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strongly recommended that specialist palliative care be integrated early, at the time of advanced cancer diagnosis, and delivered alongside standard oncology care regardless of whether the goal of care is cure or comfort. The clinical opinion resulted from strong evidence generated over the past decade from a number of high-quality randomized controlled trials that clearly demonstrated numerous benefits of early concurrent outpatient palliative care delivered near the time of advanced cancer diagnosis.48-55 Benefits observed in the trials included: improvement in patient and caregiver depression, improved patient quality of life, lower caregiver burden, higher patient survival, higher hospice use, less aggressive care, and higher patient and family satisfaction.48-55 Three of the most notable trials in early concurrent outpatient palliative care involve the central role of specialist palliative care nurses. In a clinical trial by Bakitas et al.,49 322 patients within 8 to 12 weeks of diagnosis with advanced lung, gastrointestinal, genitourinary, or breast cancer were randomized to receive either usual care or an advanced practice nurse-led telephonic coaching intervention. The intervention (Project ENABLE II: Educated, Nurture, Advise, Before Life Ends) consisted of four structured psychoeducational phone sessions that addressed topics including problem solving, symptom management, self-care, communication, and advanced care planning. Compared with usual care, the intervention group participants had significantly lower depression and higher quality of life. No significant differences were observed in symptom intensity, resource use (ie, chemotherapy, radiation, hospital and intensive care unit days, emergency department visits, advance directive completion), and survival. In the second trial, Zimmermann and colleagues54 conducted a cluster randomized trial involving 24 medical oncology clinics and 461 patients with stage III/IV lung, gastrointestinal, genitourinary, gynecologic, or breast cancer with a 6- to 24-month prognosis that were randomized to either usual care or an early palliative care intervention. The intervention consisted of: one or more monthly outpatient clinic visits with a specialist palliative care physician and nurse who co-facilitated structured symptom and psychosocial assessments; telephone follow-up; and 24-hour on-call service. Compared with usual care, the intervention group participants experienced higher quality of life and higher care satisfaction. There were no differences
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in symptom severity and medical interaction problems. Finally, in an early versus delayed intervention study, Bakitas et al.50 and Dionne-Odom et al.51 randomized 207 patients along with 122 of their family caregivers to receive an advanced practice nurseled telephonic coaching intervention (Project ENABLE III). Patients received six structured psychoeducational phone sessions; an outpatient palliative care consult; and monthly follow-up.51 Family caregivers received three structured psychoeducational phone sessions from a separate nurse coach; monthly follow-up; and a bereavement call in the circumstance of the care recipient’s death. Topics in the structured sessions included problem solving, self-care, symptom management, communication, decision-making, and advance care planning. Compared with delayed group participants, early group patients had improved 1-year survival and early group caregivers had lower depressed mood and stress burden. There were no differences in patient quality of life, patient depression, symptom impact, patient resources use, caregiver quality of life, caregiver objective burden, and caregiver demand burden. Together, these trials lend strong evidence that models of early concurrent outpatient palliative care that include nurses as active members of the interdisciplinary team have a positive impact on patient and family caregiver outcomes. While this is encouraging, stronger evidence is needed that clearly demonstrates the value of palliative care nurses. How can the delivery of high-quality cancer care be improved with patients at end of life and their families, a highly vulnerable population? First, better understanding is needed of what components of early concurrent palliative care lead to improvements in outcomes and, specifically, what components were “active” under the purview of specialist palliative care nursing. Second, the role and impact of clinical nurses who deliver palliative care must be ascertained. Because there are not enough specialist palliative care nurses for every patient with advanced cancer, disseminating such models may not be possible in every health care system. Thus, for patients with advanced cancer to benefit as much as possible, identifying the basic palliative care skills that can be delivered by clinical nurses is essential. Expanding the team for palliative care could begin to address challenges for this vulnerable population.
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Third, the optimal timing and intensity of palliative care nursing services have yet to be determined. Questions remain about how early, how often, and for how long palliative care nurses should be directly involved with the care of advanced cancer patients and their family caregivers. Examining these questions is essential for substantiating the value and role of nursing in future models of early concurrent palliative care.
CONCLUSION Vulnerable populations include the elderly, minorities, underserved, children, and patients at end of life. Delivering high-quality cancer care to, for, and with our vulnerable populations has posed unique and major challenges within a system already in crisis. Cancer demographics tilt toward an aging population and argue for aggressive efforts in preparing geriatric oncology practitioners and
research scientists. Training the next generation of cancer health disparities practitioners and scientists is progressing but much more is needed. Empowering patients and families through cancer self-management and patient centered care strategies are crucial. Exciting outcomes in the childhood cancer survivorship population thrust new responsibilities for pediatric nurses. System changes that allow for the transition to earlier palliative care with the central role of nursing and patient-centered care are projected. Observations and suggestions to tackle the problems and achieve high-quality cancer care are posed to engender thoughtful and strategic discussion.
ACKNOWLEDGMENT The authors thank Angel Bailey and Sarita Womack for their assistance in preparation of this manuscript.
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