The Challenges

The chapters in this book provide a foundation for current research and practice in many areas that impact cancer survivors. Much of this work has evolved over the past decade with the support of federal agencies, and other public and private organizations around the world. The hard work of many is beginning to come to fruition. Although momentum has significantly increased, particularly in the past decade, it is clearlyjust the beginning. This early work forms a very important base. However, a new age is dawning. Much more needs be learned, developed, and disseminated to providers, families, employers and survivors. For example, from a clinical perspective it is now recognized that there is a need for a coordinated effort following major cancer treatment. This effort should be spearheaded by the treating oncologist or primary care provider or both. Both groups seem to be vying for this new practice opportunity but from my perspective we need to look at who and how the necessary follow-up services can be best provided and not just "give it" to the most vocal lobby.

Recently, while attending a monthly meeting of brain tumor survivors a fellow survivor spoke about the anxiety she experiences several weeks before her follow-up MRI and medical exam. She had no idea that there are medications she could take or self-management strategies that she could learn that might help her cope more effectively with this quarterly ritual. She was very interested in various options members of the group spoke about. Why didn't one of her doctors, she has many of them, tell her about these options? Are these approaches so rare that they are only known by a few? Do most providers think they are a waste of time and money? The evidence doesn't show that. These anecdotes are all too familiar to survivors and have been discussed by survivors and advocates for years. This story clearly illustrates a problem of case coordination or "cancer survivor navigation" and the lack of awareness by both providers and survivors that there are options.1 This example involved a very well-educated woman living in a large city with a very supportive and attentive spouse. What about those in smaller towns or rural areas or those not as well-educated or without support persons?

Epidemiology informs us that the number of survivors is increasing and, as was mentioned many times, there is every reason to assume that this will continue upward as more effective early screening and interventions emerge and the population ages.2 Much remains to be done for these cancer survivors. There is a pressing need for bold new approaches. A systematic public health approach worldwide is one such effort that could move our understanding, prevention, and care of cancer survivors forward in a way that has been accomplished for other acute and many chronic health problems. This effort should be international in scope and comprehensive. While many elements of this type of approach are in their early stages, there needs to be many more highly skilled epidemiologists, health services researchers, exercise physiologists, nutritionists, physician researchers of all relevant specialties, physical and occupational therapists health psychologists and others involved in health care and research working together toward this goal. This cadre of professionals is needed in order to better define the dimensions of cancer survivorship, describe its natural history, by cancer type, treatment, molecular processes, and other variables yet to be defined. We need more comprehensive and representative data on the actual problems of survivors, their temporal patterns and their recurrence. There is also a need for much more precise estimates of survival by type of cancer, age, gender, and ethnicity. We need to take a more serious look at the validity and use of conditional probability estimates a more positive and perhaps accurate look at the "crystal ball" since those diagnosed with cancer are, in fact, living longer.3

There needs to be a more evidence based case definition of survivorship that genuinely captures naturally occurring phases of survival based on problems over time, patterns of problems or recovery over time, and/or various critical end points (biological, psychological, and functional). The definitions of cancer survivorship at this point have been useful but they are not based on actual patterns of outcomes or the natural history observed among cancer survivors but rather categories based upon important but personal observation4 or proposed by a few cancer survivor researchers.5 These early definitions certainly have been useful, however, it is time to go beyond them and look at natural history data to provide more realistic operational definitions of survivorship.6 There is a need for an operational definitions of "optimal survivorship" that will perhaps have different elements at various stages of cancer survivorship.

Evidence-based answers to questions related to recurrence, long-term survival, effective approaches to prevent recurrence, and existential questions are simply not available. While research related to fear associated with recurrence may be helpful in terms of managing these concerns in the short run accurate data on recurrence and how to prevent actual recurrence should have a greater impact on this fear in the long run. Providers and survivors need this information. Spiritual practices also have been used to address with these concerns, however, it is important to realize that these practices whatever they be, are not consistent with the views of all survivors. This needs to be considered in future research i.e., development of approaches for those not interested in spiritual practice. Work is progressing to help answer many of the questions above, yet long-term survival is a moving target and more dynamic forms of investigation that can capture this should prove informative.

Currently, much is being made of the need for surveillance7. What does this really mean? Are we to simply continue to follow-up on the biology of the tumor over time or does this mean routine monitoring of many aspects of health and well-being along with tumor status?

Health surveillance is certainly a major step forward and an important one in a public health approach to cancer survivorship. This long-term monitoring needs to be comprehensive and representative of all survivors. Survivors who received care in academic medical centers do not represent the majority of the population. It is important to cast the net wide. Surveillance of a range of problems in all cancer survivors over a long period of time is critical. Also, with a focus on chronic illness and enhanced quality of life there is a need for monitoring many dimensions of "function." Global measures of function continue to be used in surveillance and this represents another limitation with most surveillance. For example, measures such as the Karnofsy Scale continue to be used by many in practice. This measure is simply too general and not very sensitive in highly functioning survivors. There are measures available to track function in those with a chronic illness and these may prove more sensitive especially in highly functioning survivors. Many current measures used in cancer survivors simply do not capture the pattern of responses and activities relevant to them (e.g., work productivity, family function, roles as parents, ability to contribute to financial status, etc.) that accurately reflect the cancer survivor of the 21st century. This needs to change.

There is also a major need for systematic research on empirically validated risk factors for fatigue, pain, cognitive limitations, relationships, general well-being, depression, stress, health behaviors, and adaptation to end of life factors that maximize optimal survivorship. Studies should be initiated using conventional epidemiologi-cal methods to begin to define a set of risk factors that we can be assured play a role in biological survival and in the many dimensions of quality of life that research to date suggests are related to "optimal survivorship." This research should be conducted for all major cancer types and the subtle and not so subtle outcomes or problems survivors' encounter. As we have seen in this handbook and the cancer survivor literature informs us that these outcomes are both negative and challenging (e.g., fatigue, and pain) and potentially positive (e.g., "benefit finding," and "renewed spiritualism"). That is, if epidemiological research indicates that commonly reported risk factors are indeed characteristic of the larger population of survivors, there is a need to truly identify these factors as casual and the variables that impact these risk factors so we can ideally prevent them from occurring in the future and also develop more effective ways of managing them. This should assist in future efforts at both primary and secondary prevention. This research should use cancer-specific outcome measures e.g., fear of recurrence,8 more specific measurement of pain and function as well as various measures discussed in this book. It is no longer appropriate to simply use measures of psychopathology.9 Efforts should be made to develop a wide range of measures to assess the specific concerns of cancer survivors.8 There should also be a greater focus on functional outcomes, innovative biological markers, in addition to the use of cancer-specific self-report measures.

There is also a need to conduct studies on the mechanisms of these risk factors and how these interact with each other e.g., what is the combined role of fear of recurrence and higher levels of emotional distress or lower levels of function, if these are found to be actual risk factors. Such studies should examine the biological plausibility of these relationships and improve our understanding of psychoneu-roimmunological processes that may link the psychology of the cancer survivor to the actual behavior of the tumors including the molecular biology of tumor growth and recurrence. Innovative animal and human models need to be created so that we can more aggressively understand these relationships rather than just continue to speculate as we have been for years.9

We also need to develop new approaches that modify risk factors over the long run once identified. Randomized Controlled Trials (RCTs) evaluating innovative primary and secondary prevention approaches for a number of critical outcomes should be a priority. Much of what the Institute of Medicine10 and the chapters in this handbook indicate is that these efforts should be multidisciplinary and/or interdisciplinary in scope, given the complexity of many of these risk factors and potential outcomes. Providers do not need to send all these cases to all medical centers but use a team approach in their own practices. It's time to seriously consider referrals to providers that may not be on your common list when this seems justified.

The approaches that have evolved in the long-term clinics appear promising. With some creativity and persistence there is no reason why these approaches originally developed in the academic medical center cannot be expanded to primary care and the community clinic? This has occurred to some degree but needs to increase. I have been involved in multidisciplinary care since the early 1980s when developing the Pain Treatment Center and the Center for Occupational Rehabilitation at The University of Rochester Medical Center. I saw that even after many years of this approach being used for many complex medical problems there continued to be many challenges. Learning which specialists to involve, the specific roles of these specialists, team collaboration and insurance reimbursement or generation of other sources of revenue for clinical services are some of the challenges that continue to present realistic barriers. While it seems unrealistic to think such operations can be widely established outside of academic medical centers this is possible and very important public and private funding mechanisms must be mobilized. If cancer is truly becoming a widespread chronic illness on the rise in the aging population, is it too much to expect modern health care systems to act proac-tively and address this challenge? Also, as indicated earlier, at an individual level, by providing the type of comprehensive care discussed in this book many cancer survivors could benefit. Optimal functional restoration and well-being could then be achieved.

As many of the chapters in this book illustrate, there is a great need to focus on all stages of cancer survivorship. There is a need for greater understanding of late or advanced stages of cancer along with the need to better understand and manage the dying and grieving processes. This is an area that is very difficult to study for emotional and tactical reasons, however, a greater use of systematic qualitative and quantitative research can help move this area ahead. While this area has been primarily the province of religion, a genuine scientific understanding of the processes involved may lead to more effective ways of addressing many of the challenges related to this phase of cancer survivorship. This area is neither under the province of religion or science. Perhaps scientific study of these processes along with religious analysis can shed further light on this phase of survivorship and more importantly improve our approach to this phase of survivorship. This argument has been recently elaborated on and seems worthy of serious consideration.11

There is also a need for more education and training on the complexities of cancer survivorship and its optimal management. This education needs to be targeted at health care providers of all types and permeate society in general in order for true reform to occur. There is a strong need for training a new cadre of physicians, nurses, and other health care providers such as physical therapists, nutritionists, psychologists, social workers, audiologists, etc. who are well versed in the management of challenges faced by cancer survivors and stay on top of new information as it emerges. Employers need to learn about reintegration of survivors into the workplace. The public needs to be better informed as well. There is a clear need to train future researchers in the area of cancer survivorship. This should occur in many diverse settings such as community health and primary care settings along with the more common tertiary care environment. Lastly, and as importantly12,13 we need to train survivors themselves in self-management skills so that they are better prepared to take greater control over their health care and aspects that impact the quality of their lives.14The use of the proposed survivorship care plan is certainly a good start. It has been recommended that the care plan include details about the cancer and its treatment, support services, contact information for providers, names and numbers of key providers, likely course of recovery, possible challenges including employment, need for ongoing health maintenance, psychosocial, financial, insurance, and genetic screening follow-up. The process of creating such a plan would go a long way toward improving knowledge and communication among providers and between providers and survivors. This coordinated effort is something that has characterized optimal care for work-injured cases for years. It continues to be a challenge because of time, personnel, and inadequate provider reimbursement to name a few barriers. This does not mean this will be the case with cancer survivors. At present an important aspect of this plan is involvement of the survivor or the cancer survivor's health navigator or partner to insure the plan covers the essential elements. Health services research can shed light on ways that can actually become part of health care in the future.

As many of the chapters in this book indicate there is a need for innovative services that are consistently offered over the long-term. These services need to be better structured to facilitate access, provide unique modes of delivery and services, and provide these services in sites other than tertiary medical centers (e.g., community-based clinics). There is also a need to work toward improving reimbursement or insurance coverage in general for many of these services. After my radiation treatment my fatigue was so extreme that I felt I needed some type of treatment to improve my energy levels. I also felt this way after chemotherapy. While medication was suggested I wanted to look into complementary medicine. My insurance would not cover any of this despite having "excellent" health insurance and a very good rationale. While I paid for the care "out of pocket"; it definitely was a factor in continuing on with the care for as long as it was actually recommended.

There is a need for better understanding and effective approaches that smoothly reintegrate the cancer survivor into society. There are many anecdotal reports and more recently epidemiological data that clearly indicate cancer survivors do experience problems reintegrating into society.15We need to learn more about these challenges in order to create evidence-based policies to prevent their occurrence. These challenges can and do occur for example in the workplace. More effective rehabilitation and cancer-survivor-specific accommodations should be developed and evaluated. Approaches to improve stamina, reduce fatigue, improve cognitive abilities that may have been impacted due to the treatment or the disease itself need to be developed. Theories and approaches from human factors and ergonomics may be able to assist in these efforts. There also needs to be a greater understanding

Table 1. Challenges for Cancer Survivorship: Research, Practice, Policy, and Education

Challenges

Factors

Comprehensive and representative data on the actual problems of survivors

More accurate case definitions of survivors

Long-term surveillance of cancer survivors across major dimensions of optimal survivorship both health and functional outcomes

Systematic research on empirically validated risk factors for optimal survivorship

Studies on the mechanisms of risk factors and how they interact with each other

Development of new approaches that truly modify risk factors

Focus on all stages of cancer survivorship

Train diverse groups of health professionals

Long-term innovative services for cancer survivors

Better understanding and effective approaches to smoothly reintegrate the cancer survivor into society

- Patterns of occurence

- How long they persist

- Recurrence

- Based on observable natural history

Multiple studies that follow survivors treated in tertiary care centers and in general practice Routine monitoring of general health along with tumor activity

Use of more specific measures of function over time

Operational definitions of risk factors

Research specific to major cancer types

Use of cancer-specific outcome measures and operational definitions of optimal cancer survivorship

Development of a wide range of measures to assess the many concerns of survivors

Greater focus on functional outcomes and important biological markers

Studies of biological plausibility

Greater understanding of psychoneuroimmunology

New animal and human models

Determine effective interventions for a number of critical outcomes indicative of optimal survivorship

Greater understanding of late or advanced stages of cancer

Better understanding and management of dying and grieving processes

Greater use of systematic, qualitative, and quantitative research

Scientific research along with religious analysis Workshops/web-based/clinical training on survivorship management

Training in medical school and health professional schools

Better structured services to facilitate access, provide unique modes of delivery

Better reimbursement or insurance coverage

Learn about challenges in order to create policies Effective and cancer-survivor-specific accommodations should be developed and evaluated

Development of approaches to improve stamina, reduce fatigue, and improve cognitive abilities Greater understanding of the risk factors for break-down or stress within the family of the risk factors for breakdown or stress within the family and how to address these situation more effectively in terms of improving communication and loss of long-term meaningful relationships. Table 1 summarizes most of these suggestions. While many of these challenges have been posed by others, the point I would like to emphasize is yes progress has been made in many, not all of these areas, but even so it is time to increase existing efforts as well as initiate new ones.

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