The Complementary Medicine Education and Outcomes (CAMEO) program: A foundation for patient and health professional education and decision support programs

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Abstract

Objective

This paper describes the background, design and evaluation of a theory-informed education and decision support program for cancer patients considering complementary medicine (CM).

Methods

The program was informed by the Shared Decision Making theory, the Ottawa Decision Support Framework and the Supportive Care Framework. Previous empirical evidence and baseline research were used to identify patients’ and health professionals’ (HPs) information and decision support needs related to CM.

Results

To address the continuum of CM needs, a variety of education and decision support interventions were developed, including basic CM information and resources for patients and HPs, a group education program and one-on-one decision support coaching for patients, and an on-line education module for HPs. Evaluation of the program and individual interventions is underway.

Conclusions

This education and decision support program addresses a significant gap in care and offers an evidence-informed framework in which to translate CM evidence to conventional care settings and promote communication about CM.

Practice implications

Evidence-informed CM education and decision support interventions are needed to shift the culture around CM within conventional care settings and promote open communication that will lead to CM therapies being safely integrated into care.

Introduction

Up to 80% of Canadian cancer patients use complementary medicine (CM), yet most do not receive adequate information and decision support to assist them in safely integrating CM into their cancer treatment and care [1], [2], [3]. Whilst many CM therapies are safe and beneficial, others may pose risk to some individuals, particularly during active cancer treatment when the risk of interactions is increased [4], [5]. Alarmingly, up to 60% of cancer patients report not discussing their CM decisions with health professionals (HPs) [3], [6], [7], citing concerns about the level of knowledge and interest in CM by HPs, as well as fears about jeopardizing the patient-HP relationship [8], [9], [10]. Surveys of HPs validate this lack of knowledge and interest, as well as other barriers to open communication about CM [11], [12], [13], [14], [15], [16], [17]. These barriers include lack of time, belief that CM is not their responsibility, and a perception that there is insufficient evidence to discuss CM. Open communication is needed between patients and HPs, as well as access to evidence-informed information about CM, to support patients in making informed decisions about the safe integration of CM into care [8], [18].

Leading cancer care organizations in the US (e.g., Memorial Sloan-Kettering and MD Anderson), the United Kingdom (e.g., Macmillan Cancer Relief) and Australia (e.g., Cancer Council North South Wales) have also developed CM education and information resources for patients and HPs. These programs, however, have not focused on the development of decision support services, which are essential in assisting patients to understand the CM evidence they receive within the context of their illness as well as their beliefs, values, and goals. In addition, there has been a lack of evaluation of the impact of these programs on patients’ decisions about CM and patient-HP communication.

In 2008, the Complementary Medicine Education and Outcomes (CAMEO) program was established at the Vancouver Centre of the British Columbia Cancer Agency (BCCA), the largest tertiary cancer treatment centre in British Columbia, Canada. The goal of the CAMEO program, a collaborative initiative of the University of British Columbia and the BCCA, is to not only address the education needs of cancer patients and HPs related to CM, but also support and evaluate informed decision making about CM within a formal research program. The specific objectives of the CAMEO program are to: (1) determine the best ways to support patients and families to make safe and informed decisions about CM and cancer; (2) evaluate how to improve HPs’ knowledge and decision support skills related to CM; and (3) facilitate the development of new CM and cancer research knowledge. The overarching mission of CAMEO is to raise the bar of clinical practice, at the point of care, so that all patients experiencing cancer are assessed for CM use and provided appropriate CM information and decision support that meets their needs, in an open, unbiased, and evidence-informed manner.

This paper will outline the empirical and theoretical foundations of the CAMEO program, including the baseline research required to tailor the education and decision support interventions to the unique context and CM needs that existed within the host cancer care agency. The interventions will be described along with the outcome measures used to evaluate the impact of the interventions and overall program on patients, HPs and the institution. Implications for integrating CM education and decision support programs into practice will also be discussed.

Section snippets

Empirical foundation of the CAMEO program

A series of research studies examining the CM information needs and decision-making process of patients across the cancer trajectory stimulated the development of the CAMEO program [1], [2], [18], [19], [20], [21]. This research highlighted the numerous unmet CM needs held by cancer patients, including inadequate information, lack of open communication with HPs, and insufficient support in making CM decisions. Many patients also perceived a “gap” between CM and conventional medicine and

Information and decision support interventions

For all patients living with cancer, the CAMEO program has identified a basic need for accessible, evidence-informed information about CM. To meet this need, a website (www.bccancer.bc.ca/cameo) was developed with links to credible and evidence-based CM information resources including national and international CM websites, a CAMEO-developed patient booklet with tailored CM information specific to British Columbia, and other clinical tools, such as an adverse reaction reporting form for natural

Discussion

The development and implementation of the CAMEO program mirrors the growing attention to the importance of shared decision making (SDM) that has occurred internationally within cancer care [36], [37], [38], [39]. There has been a plethora of decision support tools developed and evaluated that address a multitude of cancer-related decisions, including screening, risk reduction, surgical options and adjuvant treatment [40], [41], [42], [43], [44], [45]. Limited tools have been developed, however,

Role of funding

The Complementary Medicine Education and Outcomes (CAMEO) Research Program was supported by a grant from the Lotte and John Hecht Memorial Foundation. Dr. Balneaves was supported by a Canadian Institutes of Health Research (CIHR) New Investigator award. Dr. Marja Verhoef was supported by a CIHR Canadian Research Chair in Complementary Medicine. There was no involvement by either the Lotte and John Hecht Memorial Foundation or CIHR in the design of the CAMEO research program.

Conflict of interest

The authors have no conflict of interests to report.

Acknowledgement

We would like to acknowledge the assistance of Ms. Carla Hilario who provided editing assistance in the preparation of this manuscript.

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