Complementary therapy and cancer: decision making by patients and their physicians: Setting a research agenda

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Abstract

An invitational meeting, entitled Complementary and Alternative Therapy: Decision Making by Cancer Patients and Their Physicians, brought together Canadian health care providers and researchers who had expertise in patient–physician communication with those who were knowledgeable about complementary therapy and cancer. The aim was to build on the existing knowledge base in both fields in order to determine the unanswered questions, the most important questions, and what methods can be applied for answering these questions. The interdisciplinary group employed a step-wise collaborative process to develop a suggested research agenda regarding decision making by physicians and their cancer patients regarding complementary therapy. The four themes identified are establishment of a registry for complementary therapy usage for cancer care; communication; outcomes measurement; and models of integration. It is hoped that these themes will be considered worthy of support by funding agencies and worthy of investigation by researchers.

Introduction

Patients with chronic or life threatening illnesses, such as cancer often find complementary therapies especially attractive. Initially, little attention was paid to complementary therapy by conventional health care providers who care for cancer patients. This has changed due to the increased use of complementary therapies by these patients and higher patient expectations for professionals to support patient choices. Caregivers and patients express frustration at the lack of information and reliability of existing studies of efficacy and safety that would inform their decision making. This uncertainty, added to the reluctance of many conventional health care providers to consider complementary approaches, leaves patients confused and vulnerable.

Research on patient–physician communication has developed in parallel to the increased interest in complementary therapy [1]. Good communication results in improved patient satisfaction, improved quality of life, and better adherence to therapeutic plans. In addition, good communication enhances the placebo effect, an important concomitant of all therapeutic approaches. This research has enhanced the awareness of physicians and other health care providers as to their role in the decision making surrounding the use of complementary therapy.

Based on the outcomes of the authors’ previous research on communication between family physicians and their cancer patients with respect to complementary therapy [2], [3], there appeared to be a value to bringing together researchers and clinicians who were knowledgeable in patient–physician communication with those who had knowledge of complementary therapy and cancer, in order to build on the existing knowledge base to determine the unanswered questions, the most important questions, and what methods can be applied for answering these questions. An additional goal was the creation of a collection of papers which would present the state of the art at the interface of patient–physician communication and complementary therapy and cancer, as represented in this issue of Patient Education and Counseling. Funding for the conference was provided by the Sociobehavioural Cancer Research Network.

The Sociobehavioural Cancer Research Network (SCRN) is a Canadian group of researchers in sites across the country who are examining behavioral issues in relation to cancer. The SCRN was created by the National Cancer Institute of Canada with funding from its “parent body”, the Canadian Cancer Society. As one of the research thrusts of the network, several projects have been initiated around complementary therapy and cancer. However, while research granting bodies are now recognizing that there is the need for sound research in respect to complementary therapy and cancer, the field of complementary therapy research is competing with conventional biomedical research topics for existing research dollars. The combination of limited available research funding, limited researcher time, and competing research priorities make it imperative that the most relevant research questions be defined. As the SCRN is committed to developing both sociobehavioural knowledge in cancer care and increased collaboration among cancer researchers, the network agreed to sponsor a process with the primary goal of developing a research agenda regarding complementary therapy and decision making by cancer patients and their physicians, that would be relevant to health care providers. This paper will describe that process and the research agenda that emerged.

Section snippets

Method

An invitational meeting, entitled Complementary and Alternative Therapy: Decision Making by Cancer Patients and Their Physicians, was organized by the authors of this paper and held in Vancouver, Canada on November 14, 1998. Canadian health care providers and researchers from a range of disciplines were invited, including oncologists, family physicians, physicians with experience in complementary therapies, nurses, patient and family counselors, social workers, psychologists, and an ethicist.

Findings

Table 1 lists research topics that were decided upon as priorities by each of the four groups at the invitational meeting. Based on these recommendations, four theme areas were identified by the organizing committee:

A. Registry – the development of a registry for those using complementary therapies for cancer would allow tracking of types of therapies used and individual outcomes, including complications. From such a registry, investigators could learn what are the most commonly used

Discussion

The process of face to face consensus building by an interdisciplinary group of experts through focused discussion is well validated for research endeavors but, surprisingly, until recently has received little attention in regards to complementary therapy. The process used in our example was consistent with participatory action research methodology which employs research and educational interventions with stakeholders in order to develop actions [8]. The action in this case is the definition of

Summary

By utilizing a step-wise interdisciplinary collaborative process, a group of Canadian investigators, clinicians, and resource people have developed a suggested research agenda regarding decision making by physicians and their cancer patients about complementary therapy. This agenda builds on the existing literature in the fields of complementary therapy and cancer and of patient–physician communication. The four themes identified are establishment of a registry for complementary therapy usage

Acknowledgments

The invitational meeting was funded by the Sociobehavioural Cancer Research Network (SCRN), which operates under the jurisdiction of the National Cancer Institute of Canada with funds from the Canadian Cancer Society. We thank our research assistants Shea Pertman and Lynda Balneaves for their contribution. We are extremely grateful to the participants in the invitational meeting who gave freely of their time and ideas: A. Best, L. Balneaves, A. Browne, J. B. Brown, B. Czerkawski, B.

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