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Recent trends in the most common lethal cancers (breast, lung, colon-rectum and prostate) reveal that the clinical research advances with the greatest potential human impact have taken place in the treatment of tumors of the lower gastrointestinal tract. Yes, breast cancer now has adjuvant trastuzumab (Herceptin®), which will significantly improve the long-term outcome for the approximately 25 percent of patients with HER2-positive disease, and lung cancer, thankfully, now has adjuvant chemotherapy, albeit with a research database that is pitifully underpowered. Prostate cancer continues to reside in the stone age of clinical research, but now for the first time, there appears to be an effective nonhormonal therapy for metastatic disease (docetaxel). However, things look much brighter in colon cancer than they did just five years ago, and we now have three very important advances, which, taken together, have outpaced the recent progress in these other research fields:
The unprecedented explosion of new research findings and the launch of a number of new clinical trials in colon cancer mean that many more options are available to patients, and sorting through these alternatives is far more complicated than it was even three years ago. Our oncology CME group has encountered many similar situations with other tumors over the last 18 years, and we believe that a critical need is to integrate the perspective of patients into the dicussion. In both breast and prostate cancer, we conducted a number of projects in the past that attempted to gather information from patients that was then delivered to our healthcare-professional audiences (2-8). We have now launched a similar initiative in colorectal cancer. The following report describes the first phase of this project,* which began in Houston on November 20, 2004, when we spent a day with approximately one hundred colorectal cancer patients and their guests at a “town meeting” featuring a panel of clinical investigators with whom we had previously worked on our physician education programs.† Our goal for this event was to learn from these attendees about their experiences not only with the disease and its treatment but also with their physicians. We also wanted to obtain input on how they saw treatment trade-offs in a variety of challenging clinical situations. These patients and guests were provided electronic keypads — a familiar tool at physician education meetings — and during the day we polled the audience on their perspectives. We also made available print response cards and a couple of dozen networked computers, which served as vehicles for us to obtain additional qualitative information. In past years, we have hosted similar town meetings for both breast and prostate cancer patients, and our first impression from this event was that all cancer patients have similar needs and interests. Based on the positive feedback and the interesting preliminary data we generated in Houston, we launched the second phase of this compelling project: a comprehensive telephone survey of 150 people with colorectal cancer from 35 states. The patients were recruited through a variety of mechanisms, including advocacy and support groups and oncology offices staffed by oncologists and oncology nurses who listen to our audio continuing education program. The protocol for this project was IRB-approved (Western #1064605), and patients were paid a modest honorarium ($125). Overview of the survey We understand that people who participate in these types of projects are not necessarily representative of all patients, and the demographics of the participants (pages 12-15) reinforce this assertion. However, our goal was not to execute a scientific study but rather to develop an awareness-raising education initiative that would arm oncology healthcare professionals with valuable patient input. For this phase of the project, each participating patient was sent a 50-minute audio CD featuring an interview I conducted with John Marshall, a GI oncology investigator from Georgetown University. In the program, John expertly reviews the information he provides to his patients about the risks and benefits of adjuvant chemotherapy and the advice he delivers on how they can manipulate their lifestyles to avoid another colorectal cancer. We instructed the patients in the study to stop the CD every eight to ten minutes and fill out an accompanying questionnaire, documenting their reactions to the information. This was followed by an in-depth telephone interview with a member of our CME group. We are presenting some of the findings from this study as a poster at the 2006 ASCO, ASTRO, SSO and American Gastroenterological Association Gastrointestinal Cancers Symposium in San Francisco. This report reviews and expands on those data and a number of other interesting areas of input from the participating patients. The CD accompanying this program and our website (www.Colorectal CancerUpdate.com/Patients) provide PowerPoint slides with graphics from this report, along with the interview with Dr Marshall. One of the key objectives of this project was to gain insight into how patients with colorectal cancer perceive the trade-offs of adjuvant systemic therapy and to determine whether the patient mindsets that we have observed in breast and prostate cancer also apply to colorectal cancer. Specifically, we were interested to see whether patients with colorectal cancer are equally focused on doing everything reasonably possible to decrease the likelihood of cancer relapse, even if it means undergoing therapies that introduce considerable toxicity. In a nutshell, we learned that many patients with colorectal cancer have very proactive attitudes toward therapy. The CME implication of this finding is that information on treatments with borderline benefits should be discussed with patients, even if the physician plans on recommending against these types of interventions. Another interesting overriding theme emerging from this study is that although most patients are extremely satisfied with their overall oncologic care, they are somewhat less pleased with the supportive information they receive from their doctors. Patients’ grading of physicians Figure 29 on page 35 demonstrates that although most patients give their treating physicians “A” grades overall, substantially fewer rate their doc an “A” as a teacher. Moreover, when patients were asked about their interest in obtaining information on a variety of topics, we again observed a gap in terms of what they actually received (Figure 30 on page 35) and what they would like to have at their disposal. It should be noted that we observed essentially the same findings in our study last year of patients with breast cancer (5, 6). It isn’t very difficult to make an educated guess about the dynamics that have led to this gap. Physician reimbursement is being constrained at the same time that increasing administrative demands are sopping up precious time and resources that could be used for patient care. Additionally, and in parallel with this discouraging trend in daily practice, a magical new tool (the web) has made unprecedented volumes of information instantly available to patients. With their appetites whetted by this tsunami of compelling content, patients have many more questions for their physicians, who unfortunately have less time for answers. To this end, we are pleased to announce that an earnest attempt to help is on the way. As we enter the next phase of this patient education project, our goal is to use the experiences and resources we have developed over the last 18 years in physician education to assist patients. 2006 plan: Evaluation of an audio/text patient education program Over the next few months, with the support and assistance of a band of clinical investigators, community-based clinicians, oncology nurses, patients and their loved ones, we will attempt to produce Version 1.0 of an audio/text patient education program designed to provide information and perspectives on three critical aspects of adjuvant systemic therapy for colorectal cancer:
If this initial focus on one of the most common and compelling clinical dilemmas in colorectal cancer medicine proves successful, many other clinical topics will be considered for future colorectal cancer patient education programs, including neoadjuvant chemoradiation therapy for rectal cancer, the choice of surgery in colon and rectal cancer and local management of hepaticonly metastases. For our initial patient education foray, we expect to produce more than seven edited hours of audio programming with accompanying text transcripts, all of which will be provided without charge to patients, via the web or through a special boxed set of six audio CDs, for evaluation and feedback. Although it’s unlikely that most users of this program will listen to or read every comment, we want to provide a spectrum of perspectives and opinions on these critical issues, and as with the initial phase of this project, we will carefully evaluate how this approach is received. One important objective is to allow patients the opportunity to compare notes as they listen to a number of nationally recognized clinical research leaders from our most prestigious cancer research and treatment facilities describe what they tell their patients about decisions regarding adjuvant chemotherapy and recovery from treatment. We will also interview oncology nurses, community-based medical oncologists and patients who have been through the experience. The use of audio as a primary medium for this purpose will be particularly interesting, and we will determine whether patients — who often are as busy as their physicians — also like the idea of obtaining information while driving their cars or exercising and then supplementing that with a perusal of the text transcript. No education vehicle can ever replace one-on-one interaction with a physician, but our hypothesis is that the colorectal cancer patient education program we are about to create will be a helpful adjunct that will allow patients to pick up additional valuable nuggets from interviewees featured in this program. Finally, we send a huge and humble “thank you” to the patients who participated in this project: the attendees at our Houston meeting and the patients who listened to the audio CD, completed the survey and then chatted with our staff on the phone. It should be noted that we asked these patients why they participated in the study, and the most common motivation was a desire to help future patients (Figure 1). We are pleased that so many of the participants found this experience to be positive (Figures 2, 3), and we hope they will feel additional gratification that their viewpoints have been incorporated into continuing education for oncology healthcare professionals. In 2006, we will determine whether some of the existing needs for patient education that are evident in these findings can be addressed through an audio/text approach that provides important perspectives on these complex but eminently understandable clinical situations. — Neil Love, MD
* The Research To Practice Colorectal Cancer Patient Education Initiative is supported by an education
grant from Sanofi-Aventis. |
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