behavioral and psychosocial cancer research. building on the past, preparing for the future

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Behavioral and Fsychosoc~a~ Cancer Research Building on the Past, Preparing for the Future Thomas G. Burish, PhD This report identifies five general conclusions that emerged from the Second Workshop on Methodology in Behavioral and Psychosocial Cancer Research. These conclusions address diverse topics, including a focus on areas other than methodology; an emphasis on the transfer of technology and knowledge to applied settings; a recognition of the role of basic behavioral research in answering clinical questions; the need to recognize and strengthen ties between the field of behavioral and psychosocial oncology and the basic behavioral and social science fields from which it emerged: and the importance of additional research on minorities and other special populations. It is suggested that meeting the challenges posed in each of these five areas is critical to continued progress in the field. Cancer 67:865-867,1991. HE SECOND WORKSHOP on Methodology in Behav- T ioral and Psychosocial Cancer Research built upon the strong foundation of the First Workshop and on six intervening years of research innovation and progress. As a review of the articles in this special supplement will document, substantive progress has been made in most areas that were the focus of the First Workshop as well as in several others, such as pain management and psy- choneuroimmunology, that were not discussed. The rea- sons for this progress are many and varied. Much progress has resulted directly from the efforts of scientists, researchers, and funding agencies, including ( 1 ) creative and ground-breaking work by senior investigators who laid the foundation for the field, (2) an infusion of new investigators into the field who brought with them much energy and fresh perspectives, (3) increased funding from major public and private organizations, and (4) in- creased multidisciplinary cooperation between medical and behavioral scientists and between researchers and cli- nicians. In addition, progress has resulted from societal changes that have impacted health research and treatment in general, including psychosocial oncology. These include (1) an increased interest in health and fitness in Western cultures; (2) an increased appreciation of the role and re- From the Department of Psychology, Vanderbilt University, Nashville, The author thanks William Redd, PhD, and John Stevens, MD, for Address for reprints: Thomas G. Burish, PhD, Provost’s Office, 22 I Accepted for publication August 13. 1990. Tennessee. their helpful comments on the manuscript. Kirkland Hall. Vanderbilt University. Nashville, TN 37240. sponsibility of the individual in maintaining health: (3) an increased interest in behavioral aspects of health in the professional community as indicated by many new societies and journals in the area; (4) and a greater ap- preciation by health professionals, funding agencies, and laypeople of the contributions that behavioral scientists can make to overcoming medical problems, such as the documented effectiveness of behavioral strategies for re- ducing problems ranging from hypertension to the nausea and vomiting that can precede cancer chemotherapy. As a result of the confluence of all of these factors, behavioral and psychosocial cancer research has moved from the rel- atively new, narrow, poorly funded area that it was at the time of the First Workshop to a well-established, broadly defined, highly visible area that has gained increased funding through peer reviewed, investigator-initiated grants and earmarked components of comprehensive cancer center core grants. Despite all this progress, much remains to be done. A major purpose of the Second Workshop was to identify major goals and objectives for the field for the next several years, building upon the progress ofthe recent past. These goals are described in the preceding articles. It is neither necessary nor wise to attempt to summarize these articles here; to do so runs the risk of unintentionally assigning greater importance to some components than to others, or of modifying the intention or meaning of the full re- ports. Rather, this brief article identifies five overarching conclusions that emerged during the discussions of specific research areas but were not the focus of any working group in particular. 865

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Page 1: Behavioral and psychosocial cancer research. Building on the past, preparing for the future

Behavioral and Fsychosoc~a~ Cancer Research Building on the Past, Preparing for the Future

Thomas G. Burish, PhD

This report identifies five general conclusions that emerged from the Second Workshop on Methodology in Behavioral and Psychosocial Cancer Research. These conclusions address diverse topics, including a focus on areas other than methodology; an emphasis on the transfer of technology and knowledge to applied settings; a recognition of the role of basic behavioral research in answering clinical questions; the need to recognize and strengthen ties between the field of behavioral and psychosocial oncology and the basic behavioral and social science fields from which it emerged: and the importance of additional research on minorities and other special populations. It is suggested that meeting the challenges posed in each of these five areas is critical to continued progress in the field. Cancer 67:865-867,1991.

HE SECOND WORKSHOP on Methodology in Behav- T ioral and Psychosocial Cancer Research built upon the strong foundation of the First Workshop and on six intervening years of research innovation and progress. As a review of the articles in this special supplement will document, substantive progress has been made in most areas that were the focus of the First Workshop as well as in several others, such as pain management and psy- choneuroimmunology, that were not discussed. The rea- sons for this progress are many and varied.

Much progress has resulted directly from the efforts of scientists, researchers, and funding agencies, including ( 1 ) creative and ground-breaking work by senior investigators who laid the foundation for the field, (2) an infusion of new investigators into the field who brought with them much energy and fresh perspectives, ( 3 ) increased funding from major public and private organizations, and (4) in- creased multidisciplinary cooperation between medical and behavioral scientists and between researchers and cli- nicians. In addition, progress has resulted from societal changes that have impacted health research and treatment in general, including psychosocial oncology. These include ( 1 ) an increased interest in health and fitness in Western cultures; (2) an increased appreciation of the role and re-

From the Department of Psychology, Vanderbilt University, Nashville,

The author thanks William Redd, PhD, and John Stevens, MD, for

Address for reprints: Thomas G. Burish, PhD, Provost’s Office, 22 I

Accepted for publication August 13. 1990.

Tennessee.

their helpful comments on the manuscript.

Kirkland Hall. Vanderbilt University. Nashville, TN 37240.

sponsibility of the individual in maintaining health: ( 3 ) an increased interest in behavioral aspects of health in the professional community as indicated by many new societies and journals in the area; (4) and a greater ap- preciation by health professionals, funding agencies, and laypeople of the contributions that behavioral scientists can make to overcoming medical problems, such as the documented effectiveness of behavioral strategies for re- ducing problems ranging from hypertension to the nausea and vomiting that can precede cancer chemotherapy. As a result of the confluence of all of these factors, behavioral and psychosocial cancer research has moved from the rel- atively new, narrow, poorly funded area that it was at the time of the First Workshop to a well-established, broadly defined, highly visible area that has gained increased funding through peer reviewed, investigator-initiated grants and earmarked components of comprehensive cancer center core grants.

Despite all this progress, much remains to be done. A major purpose of the Second Workshop was to identify major goals and objectives for the field for the next several years, building upon the progress ofthe recent past. These goals are described in the preceding articles. It is neither necessary nor wise to attempt to summarize these articles here; to do so runs the risk of unintentionally assigning greater importance to some components than to others, or of modifying the intention or meaning of the full re- ports. Rather, this brief article identifies five overarching conclusions that emerged during the discussions of specific research areas but were not the focus of any working group in particular.

865

Page 2: Behavioral and psychosocial cancer research. Building on the past, preparing for the future

866 CANCER February I Supplement 199 I Vol. 67

General Conclusions of the Second Workshop

The five general conclusions address divergent topics from various perspectives. All have significance for both the identification of specific priorities for the field and for their realization through various enabling strategies.

The focus of the First Workshop was on methodologic issues-on the instruments, study designs, and method- ologic procedures needed to generate reliable and valid findings within a relatively new area of study. The im- portance of these issues was highlighted by including the word “methodology” in the title of the Workshop. At the Second Workshop, it was agreed that the focus on meth- odology has and must be broadened to include substantive research questions that challenge the field. These include issues of theory development, training of young investi- gators, prevention and early detection practices, and de- fined population-based interventions. The movement be- yond a focused concern about methodology is apparent in the recommendations of the four working groups. Thus, the first conclusion of the Second Workshop is that al- though methodologic issues continue to be of key im- portance, they no longer are a limiting or singularly critical focus.

Second, it was agreed that further advancement of be- havioral and psychosocial cancer research depends on a greater clinical application of research findings. That is, more extensive and visible transfer of the knowledge and technology gained from basic behavioral research to the routine care of patients and the education of health professionals and the public is needed. This theme was often evident in specific questions raised by Workshop participants. For example: When will we begin to assess how the results of our research are used in the market- place? How can we make sure that our efforts in this Workshop produce change? Why do behavioral cancer researchers generally not participate in the application of their work outside of their home institution?

No ready answers were provided to these questions, although several barriers to progress were identified. Many researchers lack the expertise or inclination to take their findings from the laboratory or field setting and incor- porate them into practical settings. As a result, many pub- lish only in technical journals, sometimes only within their specific field, rather than in publications that are widely read by clinicians and the lay public. Other researchers are too cautious about their data and as a result delay the application of their findings. As one participant put it, “Progress is being held hostage by perfection.” Funding is not readily available to take a research finding and apply it in clinical or educational settings. Such application is often regarded as “service” and not deemed appropriate for research dollars, even though there is arguably an evaluatory component to such application. In summary, the second conclusion was that future progress in behav-

ioral and psychosocial cancer research, and perhaps the level of support it enjoys from both public and private organizations, will likely depend in part on the demon- stration that the data it generates can be translated into practical changes that are adopted in clinical and edu- cational settings.

The third conclusion must be taken in tandem with the second. Although there was great concern about the application of behavioral research findings, there was also concern that an overemphasis of this point might undercut the continued or expanded funding of basic research. Specifically, there was a fear that the general public, and perhaps some funding agencies, do not understand that there is a critical difference between applying basic re- search findings and requiring that all research be “applied” in nature. The transfer of technology or knowledge from a laboratory to an applied setting is a process that builds upon but cannot replace or hasten the basic research that must precede it. And the transfer process itself must be evaluated, even though the nature of the evaluatory pro- cess is often different from that used for basic research. The tendency of some funding agencies to support only large-scale, population-based studies that apply interven- tions with immediate potential for reducing cancer mor- tality rates appears to have the untoward effect of reducing funds for, and an appreciation of, basic behavioral inquiry or research. Clearly, both basic research and the practical application of this research are needed; to push one with- out the other will weaken both and ultimately have a neg- ative impact on the future development of the field.

The importance of basic behavioral research is also re- lated to the fourth general conclusion. There were several indications that behavioral and psychosocial cancer re- search might be developing in an insular fashion. Specif- ically, the development of behavioral and psychosocial oncology as a legitimate, increasingly visible, and well- funded area of research has resulted in an unintentional movement away from the basic behavioral and social sci- ences on which it is based. For example, researchers in the area are less frequently relating their findings with cancer patients back to basic behavioral and social theories to test or revise those theories. Nonetheless, it is important that cancer researchers continually identify with their basic discipline for several reasons. A strong identification be- tween basic behavioral and social sciences and cancer re- search is likely to facilitate the attraction of new psycho- social scientists into the area, either as independent in- vestigators or as collaborators. Such an identification also has implications for training: it implies that psychosocial cancer researchers must receive solid training in a basic behavioral or social science discipline before specializing in cancer-specific issues. Because of the need for additional knowledge and understanding of many medical issues re- lated to cancer, it is likely that much of the specific cancer training will be at the postdoctoral level. The close iden-

Page 3: Behavioral and psychosocial cancer research. Building on the past, preparing for the future

No. 3 PREPARING FOR THE FUTURE - Burish 867

tification with a basic behavioral or social science also increases the likelihood that research progress in one area of the field, be it cancer-specific or not, will help advance our understanding of other areas in the field. Adopting a broader discipline-oriented approach would result, for example, in more studies being designed to answer fun- damental questions about behavior, even though they might be carried out with cancer patients and be specifi- cally aimed at producing a particular outcome, such as preventing smoking in adolescents or increasing the fre- quency of breast self-examinations and mammography in adult women. Another benefit of this approach is that it would open up additional funding sources; for example, even though a researcher might be working with cancer patients, if the question being researched can be expressed in a basic behavioral or social science fashion, it qualifies for consideration from agencies that support basic re- search, such as the National Science Foundation, but would not normally support applied or clinical research. In short, the fourth conclusion was that behavioral and psychosocial cancer researchers must remain cognizant that their field developed from basic behavioral and social science disciplines and that they should base their theories on, and relate their findings back to, the literature ofthese disciplines.

Finally, regardless of the specific topic of discussion, special questions about understudied groups, especially minority groups, arose. The statistics are clear and have been known for some time: minority members generally have the highest cancer incidence rates and lowest survival rates. Minority groups and women are often not ade- quately represented in samples of patients on which in- struments are validated, interventions are developed, or theories are generated. In some cases complications and mortality rate differences among minority groups may actually not be due directly to race or ethnic background but to other factors such as socioeconomic status. In the end many, perhaps most, of the differences among groups in cancer incidence and survival may be due to behavioral factors: to the behavior of patients, such as the degree to which they engage in behaviors that promote health or lead to the early diagnosis of disease; to the behavior of health professionals, who may or may not order various tests depending on a perceived ability of the patient to pay for the tests; and to the policies of health service de- livery systems, which may reach out to, be readily available to, or give preference to one group of individuals over another. Researchers may also be contributing to the dis- parity: they often do not include adequate numbers of minority members or women in their patient samples. As a result instruments may be valid for some populations but not others, patient recruitment techniques may un- wittingly exclude some groups, and so forth. Unfortu- nately, it is much easier to bemoan the lack of information available on special populations than to design and suc-

cessfully conduct research that will provide the infor- mation. Nonetheless, there was a renewed sense of com- mitment to the conclusion that research on minority and other special populations has been inadequate and that there is an urgent need to address this important issue.

Challenge of the Future Behavioral and psychosocial factors are becoming rec-

ognized as critical to the understanding, prevention, and treatment of cancer. As the importance of these factors has increased, so too has research aimed at measuring, understanding, and controlling them. Behavioral and psychosocial cancer research is now an integral compo- nent of many comprehensive cancer centers, and it is rec- ognized widely in the medical and social science com- munities as a legitimate and valued area of inquiry, the findings of which have implications that extend well be- yond cancer. It has become an established field.

Despite (or perhaps because of) the progress the field has made in recent years, it faces many new challenges. Its findings have not adequately influenced clinical ap- plication, educational curricula, or public policies; there will surely be an increased demand that they do so. Its investigators will increasingly have to compete for limited research dollars with investigators from basic and medical sciences. The movement of new researchers into the field appears to have slowed down; more emphasis on attracting and training young scientists will be needed. As the field becomes more established, it must work harder to main- tain its ties and interactions with the basic behavioral and social sciences on which it is based. The field must con- stantly distinguish itself from the nonscientific, unortho- dox, and quack approaches that are often attributed to it. And now that the importance of behavioral factors in cancer is so widely known and appreciated, both the public and policymakers are likely to expect more from behav- ioral and psychosocial researchers and become increas- ingly intolerant and frustrated with any perception of un- fulfilled promises.

Perhaps in the end, the demonstration of great promise, and the demand that this promise be fulfilled, summarizes the past and future, respectively, of the field of behavioral and psychosocial oncology. The field has grown to a point that it is respected, supported, and recognized by the professional and lay community to have much promise for the prevention, early detection, symptom manage- ment, and treatment of cancer. But many of these prom- ises are as yet unfulfilled. The progress of the past has led to a demand for action in the future. The clinical com- munity and public increasingly will insist that the knowl- edge and technology generated by research be translated into actions that are practical and effective in producing healthy change. Meeting this demand without loss of con- tinued advancement in basic research is the challenge for the future.