Psychosocial issues in colorectal cancer survivorship: the top ten questions patients may not be asking

Advances in colorectal cancer screening and treatment have increased survivorship significantly in recent years. This has led to an increased emphasis on the need for continuing patient care long after cancer treatment is completed. Colorectal cancer survivors may face a number of psychosocial issues following treatment, including cancer-related distress, adjustment to physical changes following treatment, and challenges related to returning to work. Although there are many resources available to assist with these challenges, many patients may not seek this information from their providers during follow-up care visits. This article highlights some of the most common patient concerns related to survivorship in colorectal cancer and serves as a reminder to ask about these concerns throughout the course of treatment and follow-up care.     

National Thoracic Surgery Standards Implementation: Barriers,Enablers, and Opportunities

Background: Diagnosis and surgical treatment decision making for thoracic cancers is complex. Moreover, there is demonstrated variability in how each province in Canada delivers cancer care, resulting in disparities in patient outcomes. Recently, the Canadian Partnership Against Cancer (CPAC) published pan-Canadian evidence-based standards for the care of thoracic surgery cancer patients. This study was undertaken to assess the degree to which these standards were currently met in practice and to further understand the determinants to their implementation nationally. Methods: This study was undertaken in two parts: (1) a national survey of thoracic surgeons to assess the perceived extent of implementation of these standards in their institution and province; and (2) formation of a focus group with a representative sample of thoracic surgeons across Canada in a qualitative study to understand the determinants of successful standards implementation. Results: 37 surgeons (33% response rate) participated in the survey; 78% were from academic hospitals. The top categories of standards that were under-implemented included (a) quality assurance processes, data collection and clinician audit and feedback, and (b) ongoing regional planning and workload assessments for thoracic surgeons, and (c) pathology turnaround time target of two weeks and the use of a standardized synoptic pathology report format. Enablers, barriers, and opportunities for standards implementation contextualized the discussion within the focus group. Conclusion: Study results demonstrated variation in the implementation of surgery standards across Canada and identified the determinants to the delivery of high quality surgical care. Future work will need to include the promotion and development of quality improvement strategies and effective resource allocation that is aligned with the implementation of thoracic cancer surgery standards in order to improve patient outcomes.     

Survivorship care for older adults with cancer: U13 conference report

Older adult cancer survivors currently account for almost 60% of all cancer survivors. The number of older cancer survivors will continue to increase as the population ages and as patients' live longer after a cancer diagnosis. As part of cancer center accreditation, the American College of Surgeons Commission on Cancer® (CoC) has placed great importance on survivorship care planning. While the CoC has set standards for general survivorship care, there is sparse evidence on how to best care for older adult cancer survivors. Concern exists among the medical community that survivorship care plans could increase paperwork without improving outcomes. Given the diverse and unique needs of older adult cancer survivors, the inter-professional team provides a structure and process for survivorship care built around the particular needs of older adults. The Cancer and Aging Research Group (CARG), in partnership with the NIA/NCI, held a U13 conference in May 2015 in part to discuss survivorship care for older adults with cancer. This report discusses four themes that emerged from one section of the conference: (1) survivorship care is a process that continually evolves to meet the needs of older adults; (2) older adult cancer survivors have unique needs and care plans should be tailored to meet these needs; (3) the inter-professional team is ideally suited to structure survivorship care of older adults; (4) patient advocacy must be encouraged throughout the cancer care continuum. As evidence based survivorship practices develop, the unique needs of older adults need to be given substantial attention.     

Self-management: Enabling and empowering patients living with cancer as a chronic illness

With recent improvements in the early detection, diagnosis, and treatment of cancer, people with cancer are living longer, and their cancer may be managed as a chronic illness. Cancer as a chronic illness places new demands on patients and families to manage their own care, and it challenges old paradigms that oncology's work is done after treatment. As a chronic illness, however, cancer care occurs on a continuum that stretches from prevention to the end of life, with early detection, diagnosis, treatment, and survivorship in between. In this article, self-management interventions that enable patients and families to participate in managing their care along this continuum are reviewed. Randomized controlled trials of self-management interventions with cancer patients and families in the treatment, survivorship, and end-of-life phases of the cancer care continuum are reviewed, and the Chronic Care Model is presented as a model of care that oncology practices can use to enable and empower patients and families to engage in self-management. It is concluded that the need for a common language with which to speak about self-management and a common set of self-management actions for cancer care notwithstanding, oncology practices can now build strong relationships with their patients and formulate mutually agreed upon care plans that enable and empower patients to care for themselves in the way they prefer.     

Cancer research network: using integrated healthcare delivery systems as platforms for cancer survivorship research

Introduction

Much progress has been made in cancer survivorship research, but there are still many unanswered questions that can and need to be addressed by collaborative research consortia.

Methods

Since 1999, the National Cancer Institute-funded HMO Cancer Research Network (CRN) has engaged in a wide variety of research focusing on cancer survivorship. With a focus on thematic topics in cancer survivorship, we describe how the CRN has contributed to research in cancer survivorship and the resources it offers for future collaborations.

Results

We identified the following areas of cancer survivorship research: surveillance for and predictors of recurrences, health care delivery and care coordination, health care utilization and costs, psychosocial outcomes, cancer communication and decision making, late effects of cancer and its treatment, use of and adherence to adjuvant therapies, and lifestyle and behavioral interventions following cancer treatment.

Conclusions

With over a decade of experience using cancer data in community-based settings, the CRN investigators and their collaborators are poised to generate evidence in cancer survivorship research.

Implications for Cancer Survivors

Collaborative research within these settings can improve the quality of care for cancer survivors within and beyond integrated health care delivery systems.     

Follow-up of adult cancer survivors: new paradigms for survivorship care planning

The reality of cancer care in the twenty first century is that patients live longer and are more likely to receive care from multiple providers across diverse delivery systems over many years. To meet the challenge of optimal survivor care, a summary of cancer treatment and a formal plan for survivorship must be explained to patients and shared among providers at the end of cancer treatment. These plans must be dynamic documents that change with the circumstances of individual patients, the growth of knowledge, and the guidelines in specific relevant areas. In the new paradigm, open communication across the spectrum of survivor needs and concerns (as contained in a survivorship care plan) will successfully transition cancer patients to healthy survivors. Survivorship planning must become an integral part of every oncologist's education and practice.     

Improving Cancer Survivorship Care: Oncology Nurses’ Educational Needs and Preferred Methods of Learning

Oncology nurses are essential in all phases of cancer care; however, their role in survivorship care is unclear. To better understand the self-reported knowledge and educational needs on topics of survivorship care and oncology nurses’ learning preferences, an online survey was conducted. Respondents self-reported knowledge level for 31 care topics, identified areas of most interest, topics needed to assist patients and address patient questions, and reported participation in continuing education and preferred learning methods. Knowledge was rated highest for topics of fatigue, anxiety, and fear of recurrence and lowest for issues related to finance, employment, and insurance. Nurses were most interested in late and long-term physical effects of cancer or treatment, managing emotional issues, cancer screening and surveillance, and complementary and alternative therapies. Study findings suggest that online learning methods would be feasible and well accepted by nurses to meet continuing education needs related to cancer survivorship.     

Cancer survivorship training: a pilot study examining the educational gap in primary care medicine residency programs

Background

Cancer survivors need high-quality follow-up care that addresses long-term problems related to cancer and their treatment. With growing numbers of cancer patients transitioning from oncological treatment to survivorship care, primary care physicians (PCPs) will play a major role in the delivery of survivorship care.

Objective

This pilot study was undertaken to provide initial insights into internal medicine (IM) and family medicine (FM) residents’ educational experience, training, and preparedness for practice as healthcare providers of adult cancer survivors (ACS).

Design

This study utilizes an anonymous cross-sectional, electronic survey of a sample of US IM and FM residents.

Participants

A total of 77 residents in their PGY-3 year of training responded to the survey, including 53 IM (69 %) and 24 FM (31 %) residents.

Results

The majority (97 %) of respondents performed as PCPs for ACS during their training, and 81 % expected to take care of such patients in the future. However, only a minority reported feeling very comfortable in this role or very confident of identifying cancer recurrence and potential long-term effects of cancer treatment (13 %, 21 %, and 15 %, respectively). Formal education in survivorship care was reported by 27 % of residents and was modestly associated with knowledge responses. High clinical exposure (defined as having ≥10 opportunities to perform as the PCP for ACS) was significantly associated with self-reported knowledge, comfort level, and self-confidence in being able to evaluate and manage potential long-term effects of cancer treatment and their symptoms.

Conclusions

Our results suggest there is a substantial disconnect between resident’s educational experience, training, and self-reported preparedness for practice in cancer survivorship in both IM and FM training specialties.

Implications for Cancer Survivors

Inadequate training in cancer survivorship represents a barrier to providing adequate cancer follow-up. Inexperience or unawareness of essential survivorship issues could lead to mistakes which affect survivors’ health and timely assessment of long-term cancer-associated morbidity. As PCPs will play a key role in the delivery of survivorship care, effective educational opportunities and achievement of competencies in adult cancer survivorship care by primary care trainees are needed.     

Adult Cancer Survivorship: Evolution,Research, and Planning Care

Increases in the number of adult cancer survivors and other issues have forced the oncology community to examine, evaluate, and alter the cancer care paradigm. Pediatric oncologists are grappling with the task of transitioning a growing population of adult survivors of childhood cancer to adult medicine, while oncologists caring for adult cancer survivors are seeking models of follow‐up care that are acceptable to patients and providers. Workforce and access‐to‐care issues suggest that primary care providers will see more cancer survivors in their practices across time, although it is unclear how prepared they are for this task. Translational research is needed to develop evidence‐based clinical care and survivorship care plans. A broad picture of the evolving field of adult cancer survivorship is presented. The recent focus on young adult survivors of childhood cancer, an overview of translational research needed to inform the physical and psychosocial care of cancer survivors, and the roles of primary and specialty care providers managing this population is examined. Finally, an overview of evolving treatment summary and care plan initiatives is presented. CA Cancer J Clin 2009;59:391–410. © 2009 American Cancer Society, Inc.     

Research needs in breast cancer

New research questions emerge as medical needs continue to evolve and as we improve our understanding of cancer biology and treatment of malignancies. Although significant advances have been made in some areas of breast cancer research resulting in improvements in therapies and outcomes over the last few decades, other areas have not benefited to the same degree and we continue to have many gaps in our knowledge. This article summarizes the 12 short and medium-term clinical research needs in breast cancer deemed as priorities in 2016 by a panel of experts, in an attempt to focus and accelerate future research in the most needed areas: (i) de-escalate breast cancer therapies in early breast cancer without sacrificing outcomes; (ii) explore optimal adjuvant treatment durations; (iii) develop better tools and strategies to identify patients with genetic predisposition; (iv) improve care in young patients with breast cancer; (v) develop tools to speed up drug development in biomarker-defined populations; (vi) identify and validate targets that mediate resistance to chemotherapy, endocrine therapy and anti-HER2 therapies; (vii) evaluate the efficacy of local-regional treatments for metastatic disease; (viii) better define the optimal sequence of treatments in the metastatic setting; (ix) evaluate the clinical impact of intra-patient heterogeneity (intra-tumor, inter-tumor and inter-lesion heterogeneity); (x) better understand the biology and identify new targets in triple-negative breast cancer; (xi) better understand immune surveillance in breast cancer and further develop immunotherapies; and (xii) increase survivorship research efforts including supportive care and quality of life.     

Long term physical sequelae after adult-onset cancer

Introduction With two thirds of cancer patients living for at least 5 years, clinical research has increasingly focused on the long-term health of cancer survivors. Contrary to the amount of knowledge on long-term consequences observations on late effects after childhood cancer in adult-onset cancer are sparse. Only limited literature is available recommending guidelines for long-term follow-up of cancer patients and their implementation in the delivery of health care. Methods In this review we summarize updated knowledge on the most frequent physical long-term effects after adult-onset cancer, and we discuss how these findings can be implemented in life-long follow-up programs of cancer survivors. Results Second cancer, cardiovascular disorders and gonadal dysfunction are the most common physical late effects along with fatigue. Common age-related co-morbidity reduces physical function in long-term cancer survivors. Conclusions Cancer survivors have to be informed about their risk of late effects, and how to prevent them by life style adjustments and, if indicated, regular health care visits. Studies on late effects after cancer treatment should be combined with translational research in order to improve our understanding of pathophysiological mechanisms of long-term effects. The effectiveness of therapeutic interventions for reduction of these treatment sequelae in long-term survivors need to be investigated in randomized trials. Guidelines for life-long follow-up of cancer survivors should be established and will form the first step is the design of an individual life-long cancer survivor care plan.     

Ongoing care of patients after primary treatment for their cancer

Nearly nine million people living in the United States have had a diagnosis of cancer. As the population ages, this number will increase. Most of these people will need follow-up care to deal with problems related to their cancer. Depending on the cancer, they may or may not benefit from surveillance to detect recurrence. Most will be more likely than average to develop a second primary cancer. Some will be genetically susceptible to another type of cancer. Many will have complications from their treatment that need attention. Also, their treatment may have altered certain physiologic functions. Finally, many will have suffered psychosocial difficulties either as a result of their cancer or its treatment. This article deals with these issues for the most commonly encountered cancers. Its major goal is to alert physicians to be aware of and help them to deal with these issues. Clearly, such an ambitious goal can only be partly achieved in a single journal article. Hopefully, the references included will allow physicians to proceed further if they wish.     

A new quality standard: the integration of psychosocial care into routine cancer care

There is a growing consensus that psychosocial care should be integrated into the routine care of patients with cancer. This consensus is consistent with the considerable body of evidence about the deleterious effects of allowing psychosocial needs to remain unmet and the growing body of evidence about the beneficial effects of providing psychosocial services to address unmet needs. Despite this evidence, available data suggest that a considerable portion of the population of patients with cancer does not receive needed psychosocial care. Three lines of professional activity initiated in recent years have the potential to address this issue in fundamental ways: the formulation of standards of cancer care that address the psychosocial component of care, the issuance of clinical practice guidelines for psychosocial care of patients with cancer, and the development and implementation of measurable indicators of the quality of psychosocial care in oncology settings. This article provides an overview of accomplishments in each of these areas; it is designed to ensure that oncologists and other cancer treatment providers are knowledgeable about current standards for psychosocial care, existing consensus- and evidenced-based recommendations for clinical practice in this area, and resources and tools for evaluating and, if indicated, improving the quality of the psychosocial care their patients are receiving. The article concludes with a critical appraisal of these activities and a consideration of how current efforts might be enhanced.     

Implementing personalized pathways for cancer follow-up care in the United States: Proceedings from an American Cancer Society–American Society of Clinical Oncology summit

A new approach to cancer follow-up care is necessary to meet the needs of cancer survivors while dealing with increasing volume and provider shortages, knowledge gaps, and costs to both health care systems and patients. An approach that triages patients to personalized follow-up care pathways, depending on the type(s) and level(s) of resources needed for patients’ long-term care, is in use in the United Kingdom and other countries and has been shown to meet patients’ needs, more efficiently use the health care system, and reduce costs. Recognizing that testing and implementing a similar personalized approach to cancer follow-up care in the United States will require a multipronged strategy, the American Cancer Society and the American Society of Clinical Oncology convened a summit in January 2018 to identify the needed steps to move this work from concept to implementation. The summit identified 4 key strategies going forward: 1) developing a candidate model (or models) of care delivery; 2) building the case for implementation by conducting studies modeling the effects of personalized pathways of follow-up care on patient outcomes, workforce and health care resources, and utilization and costs; 3) creating consensus-based guidelines to guide the delivery of personalized care pathways; and 4) identifying and filling research gaps to develop and implement needed care changes. While these national strategies are pursued, oncology and primary care providers can lay the groundwork for implementation by assessing their patients’ risk of recurrence and the chronic and late effects of cancer as well as other health care needs and resources available for care and by considering triaging patients accordingly, referring patients to appropriate specialized survivorship clinics as these are developed, helping to support patients who are capable of self-managing their health, setting expectations with patients from diagnosis onward for the need for follow-up in primary care and/or a survivorship clinic, and improving coordination of care between oncology and primary care.     

Economic burden of cancer in the United States: estimates, projections, and future research

The economic burden of cancer in the United States is substantial and expected to increase significantly in the future because of expected growth and aging of the population and improvements in survival as well as trends in treatment patterns and costs of care following cancer diagnosis. In this article, we describe measures of the economic burden of cancer and present current estimates and projections of the national burden of cancer in the United States. We discuss ongoing efforts to characterize the economic burden of cancer in the United States and identify key areas for future work including developing and enhancing research resources, improving estimates and projections of economic burden, evaluating targeted therapies, and assessing the financial burden for patients and their families. This work will inform efforts by health care policy makers, health care systems, providers, and employers to improve the cancer survivorship experience in the United States.     

Implementation of the Canadian National Standards in Breast Cancer Surgical Care: Gaps,Barriers, Enablers and Opportunities

Background: Diagnosis and surgical treatment decision making for breast cancers has become increasingly complex. Recently, Canadian Partnership Against Cancer (CPAC) published pan-Canadian evidence-based surgical standards for the care of breast cancer patients. This study was undertaken to assess the degree to which these standards were currently met in practice and to further understand the determinants of their implementation nationally. Methods: This study was undertaken in two parts—(1) National survey of breast cancer surgeons to assess the perceived extent of implementation of these standards in their institution and province; (2) Formation of a focus group with a representative sample of breast surgeons across Canada to further understand the barriers and facilitators towards future breast standards implementation. Results: 35 surgeons participated in the survey: 66% were from community hospitals. There were four categories of standards that were the most significantly lacking across the country—(a) processes related to quality assurance, (b) turnaround time for pathology results (c) psychosocial and health-related support for the breast cancer patient and (d) breast reconstruction for patients undergoing mastectomy. The focus group included participants from all ten Canadian provinces. For each standard, the 134 determinants fell into three main categories—individual physician (n = 27, 20%); organizational (n = 46, 34%), and system (n = 61, 46%). While specific determinants were present for each category, surgical standards were more likely to be implemented in practice if (1) they aligned with organizational priorities standards; (2) the individual physicians or physician groups were accountable to the organization and/or cancer jurisdiction regarding compliance with the standard; and (3) if infrastructure or resources existed within the organization or system for the reliable collection of relevant, meaningful, practice changing data combined with the capability of benchmarking, peer–peer comparisons and timely feedback to the surgeons. Conclusion: The results of this study demonstrated variation, barriers and opportunities for the national implementation of CPAC’s breast cancer surgery standards and identified determinants of high-quality breast surgical care delivery.     

Using routinely collected data to stratify prostate cancer patients into phases of care in the United Kingdom: implications for resource allocation and the cancer survivorship programme

Background:

Prostate cancer is the most commonly diagnosed malignancy in British men. The increasing use of PSA screening test has resulted in many more patients being diagnosed with this condition. Advances in its treatment have improved the survival rate among these patients. By 2040, the prevalence of prostate cancer survivors is expected to reach 830 000. Many of them will require medical support for the management of their progressive disease or long-term toxicities from previous treatments. Successful implementation of the cancer survivorship programme among these patients depends on a good understanding of their demand on the health care system. The aim of this study is to segment the population of prostate cancer survivors into different needs groups and to quantify them with respect to their phase of care.

Methods:

Incidence, survival, prevalence and mortality data collected and reported by cancer registries across the United Kingdom have been used for the current study to provide indicative estimates as to the number of prostate cancer patients in each phase of the care pathway in a year.

Results:

The majority of prostate cancer patients are in the post-treatment monitoring phase. Around a fifth of the patients are either receiving treatment or in the recovery and readjustment phase having completed their treatment in the preceding year. Thirteen percent have not received any anticancer treatment, a further 12% (32 000) have developed metastatic disease and 4% are in the final stage of their lives.

Conclusion:

On the basis of our estimates, patients undergoing post-treatment monitoring phase will constitute the biggest group among prostate cancer survivors. The pressure to provide adequate follow-up care to these patients will be a challenge. There is limited data available to definitively quantify the number of prostate cancer patients who follow different pathways of care, and we hope this study has highlighted the importance of collecting and reporting of such data to help future health care planning for these patients.     

Biomarkers, bundled payments, and colorectal cancer care

Changes in the management of cancers such as colorectal cancer (CRC) are urgently needed, as such cancers continue to be one of the most commonly diagnosed cancers; CRC accounts for 21% of all cancers and is responsible for mortalities second only to lung cancer in the United States. A comprehensive science-driven approach towards markedly improved early detection/screening to efficacious targeted therapeutics with clear diagnostic and prognostic markers is essential. In addition, further changes addressing rising costs, stemming from recent health care reform measures, will be brought about in part by changes in how care is reimbursed. For oncology, the advances in genomics and biomarkers have the potential to define subsets of patients who have a prognosis or response to a particular type of therapy that differs from the mean. Better definition of a cancer's behavior will facilitate developing care plans tailored to the patient. One method under study is episode-based payment or bundling, where one payment is made to a provider organization to cover all expenses associated with a discrete illness episode. Payments will be based on the average cost of care, with providers taking on a risk for overutilization and outliers. For providers to thrive in this environment, they will need to know what care a patient will require and the costs of that care. A science-driven "personalized approach" to cancer care has the potential to produce better outcomes with reductions in the use of ineffectual therapies and costs. This promising scenario is still in the future, but progress is being made, and the shape of things to come for cancer care in the age of genomics is becoming clearer.