Canadian integrative oncology research priorities: results of a consensus-building process.

BACKGROUND: In Canada, many diverse models of integrative oncology care have emerged in response to the growing number of cancer patients who combine complementary therapies with their conventional medical treatments. The increasing interest in integrative oncology emphasizes the need to engage stakeholders and to work toward consensus on research priorities and a collaborative research agenda. The Integrative Canadian Oncology Research Initiative initiated a consensus-building process to meet that need and to develop an action plan that will implement a Canadian research agenda. METHODS: A two-day consensus workshop was held after completion of a Delphi survey and stakeholder interviews. RESULTS: FIVE INTERRELATED PRIORITY RESEARCH AREAS WERE IDENTIFIED AS THE FOUNDATION FOR A CANADIAN RESEARCH AGENDA: EffectivenessSafetyResource and health services utilizationKnowledge translationDeveloping integrative oncology models Research is needed within each priority area from a range of different perspectives (for example, patient, practitioner, health system) and in a way that reflects a continuum of integration from the addition of a single complementary intervention within conventional cancer care to systemic change. Strategies to implement a Canadian integrative oncology research agenda were identified, and working groups are actively developing projects in line with those strategic areas. Of note is the intention to develop a national network for integrative oncology research and knowledge translation. CONCLUSIONS: The identified research priorities reflect the needs and perspectives of a spectrum of integrative oncology stakeholders. Ongoing stakeholder consultation, including engagement from new stakeholders, is needed to ensure appropriate uptake and implementation of a Canadian research agenda.

Understanding coronary artery disease patients' decisions regarding the use of chelation therapy for coronary artery disease: descriptive decision modeling.

BACKGROUND: A considerable number of patients receive chelation therapy to treat their coronary artery disease. However, there is no current empirical evidence to support its use. AIM: To better understand patient's decision-making processes regarding the use of chelation therapy as a treatment for coronary artery disease. METHODS: Based on qualitative interviews with 32 coronary artery disease patients, a taxonomy of decision-related issues, hierarchical decision-model, and survey based on the model were developed. The model was then pilot tested with another group of 30 patients and revised accordingly. The final model was tested with another group of 167 patients (27 current users, 72 previous users, and 68 never users of chelation therapy). The primary examination of the model was to determine the degree to which it successfully identified people who fell within each behavioral group. This was done by dividing the total number of successes by the total number of cases on all paths (or questions in the questionnaire). RESULTS: The most important elements in the decision to use or not use chelation therapy were: previous experience with or learning about chelation therapy, openness to alternative treatments, satisfaction with current level of (traditional) care, physician opinion regarding chelation therapy, costs associated with chelation therapy, perceived access to chelation therapy provider, current state of health (good or bad), and wanting to do 'all one can' for heart health. When tested, the ability of the model to predict the appropriate outcome was nearly 93%. The most salient junctures in the model that led participants to different behavioral outcomes were: considering using non-traditional treatments; perceptions regarding potential risks and benefits; cost; and believing that using chelation therapy was 'doing all that they can' to help their heart health. CONCLUSIONS: Descriptive decision-modeling is a useful method to depict cardiac patients' decision-making concerning the use of chelation therapy. It can also assist healthcare providers and policy makers in directing interventions and policy aimed at enhancing the use of evidence-based therapies for cardiac patients.

CAM information online: an audit of Internet information on the "Bill Henderson Protocol".

OBJECTIVES: The objective of this study was to identify and describe online information about a complementary and alternative dietary intervention for cancer treatment, the Bill Henderson Protocol. DESIGN: A scoping method was applied to the Internet to identify information available on the Bill Henderson Protocol. Using the advanced search option, "Google," "Yahoo" and "Alta Vista" were used to search for the phrase "Bill Henderson Protocol." MAIN OUTCOMES: Information was found on 79 web pages. Most of the information took the form of personal commentaries and anecdotes, and included both positive and negative reports. Information was frequently found about different components of the protocol, but only one webpage provided complete details on what the regimen entails. Frequently, links were provided to Bill Henderson's website, where further protocol information could be found, including the opportunity to purchase his book. No empirical evidence was found. CONCLUSIONS: This study summarized information available on the Internet for the Bill Henderson Protocol an alternative dietary intervention intended to be used by people with cancer as a potentially curative treatment. The results of this study illustrate that new treatment interventions can be proposed, disseminated, discussed and used by consumers in advance of definitive evidence regarding efficacy and safety. This has implications for physician-patient interactions.

Complementary therapies for cancer patients: assessing information use and needs.

Many cancer patients seek complementary therapies (CTs) for cancer management; however, relatively little is known about patients' CT information seeking behaviour. Therefore, we assessed: 1) cancer patients' use of the types and sources of CT information; 2) their information preferences; and 3) their understanding of the phrase "scientific evidence or proof that a therapy works." We collected data from 404 patients attending the Tom Baker Cancer Centre (TBCC) in Calgary and 303 patients calling the Cancer Information Service (CIS) helpline. In most cases, patients wanted information on the safety of CTs, how CTs work and their potential side effects. Physicians and conventional cancer centres were the most desired sources of CT information, but relatively few patients obtained information via these sources. Although patients were aware of the meaning of scientific evidence, they often used information based on non-scientific evidence, such as patient testimonials. The creation of a supportive care environment in conventional cancer treatment centres, by providing CT information, may help address cancer patients' concerns and alleviate some of the stress that may have been caused by the cancer diagnosis.

Declining conventional cancer treatment and using complementary and alternative medicine: a problem or a challenge?

BACKGROUND: Several studies have shown that a small but significant percentage of cancer patients decline one or more conventional cancer treatments and use complementary and alternative medicine (CAM) instead. OBJECTIVES: Here, drawing on the literature and on our own ongoing research, we describe why cancer patients decide to decline conventional cancer treatments, who those patients are, and the response by physicians to patients who make such decisions. RESULTS: Poor doctor-patient communication, the emotional impact of the cancer diagnosis, perceived severity of conventional treatment side effects, a high need for decision-making control, and strong beliefs in holistic healing appear to affect the decision by patients to decline some or all conventional cancer treatments. Many patients indicate that they value ongoing follow-up care from their oncologists provided that the oncologists respect their beliefs. Patients declining conventional treatments have a strong sense of internal control and prefer to make the final treatment decisions after considering the opinions of their doctors. Few studies have looked at the response by physicians to patients making such a decision. Where research has been done, it found that a tendency by doctors to dichotomize patient decisions as rational or irrational may interfere with the ability of the doctors to respond with sensitivity and understanding. CONCLUSIONS: Declining conventional treatment is not necessarily an indicator of distrust of the medical system, but rather a reflection of many personal factors. Accepting and respecting such decisions may be instrumental in "keeping the door open."

Principles to guide integrative oncology and the development of an evidence base.

BACKGROUND: Integrative oncology uses both conventional and complementary medicine to meet the needs of individual patients and to focus on the whole person. The core principles of integrative oncology include individualization, holism, dynamism, synergism, and collaboration, but the nature of the evidence to guide the development of integrative oncology has been given little attention. OBJECTIVES: To discuss the need for evidence to support the integration of complementary therapies for integrative oncology care. To emphasize that the evidence base must be valid and respect the underlying principles of individual complementary therapies and integrative oncology practice. To suggest ways to begin developing the evidence base. REVIEW AND DISCUSSION: Although the evidence for safety and efficacy seems paramount for supporting the integration of an individual complementary therapy into mainstream cancer care, the need for evidence to support the overall practice of integrative oncology has to be considered as well. We argue that developing an evidence base for integrative oncology requires a contextual and comprehensive research approach that assesses a range of outcomes over a suitable period of time that the patient and the patient's family, in addition to the health care providers, deem important. CONCLUSION: A whole-systems framework to the development of the evidence base for integrative oncology can guide the development of evidence that respects the complex nature of many complementary and integrative practices and their underlying principles of care delivery.

Talking to cancer patients about complementary therapies: is it the physician's responsibility?

BACKGROUND: To ensure the safety and effectiveness of cancer management, it is important for physicians treating cancer patients to know whether their patients are using complementary and alternative medicine (CAM) and if so, why. OBJECTIVE: Here, we discuss the ethical and legal obligations of physicians to discuss cam use in an oncology setting, and we provide practical advice on how patient-provider communication about cam can be improved. RESULTS: Physicians have both ethical and legal obligations to their patients, including the obligation to respect patient autonomy. This latter obligation extends to use of CAM by patients and needs to be addressed beginning early in the patient-provider relationship. Because lack of education in this field and lack of time during patient consultations are barriers to talking with patients about cam, we provide resources to facilitate such discussions. These resources include suggestions on how to discuss the topic of cam and a wide range of information sources. CONCLUSIONS: Discussing CAM with patients is the physician's responsibility, and such discussion will facilitate evidence-based, patient-centred cancer care.

Women's needs for CAM information to manage menopausal symptoms.

OBJECTIVE: To identify the information needs of women regarding complementary and alternative medicine (CAM) treatment options to alleviate menopausal symptoms. METHODS: Self-administered questionnaires were mailed to women responding to notices posted in family physicians' offices and a women's health center. Survey questions addressed preferred topics, formats and sources of information; experiences with information searching; and what signified good, trustworthy information. RESULTS: The women in this study (n = 413) indicated several challenges including a lack of time to gather information, gaps in, and lack of, relevant information, and poor information quality. They expressed interest in information about the menopausal process, conventional and CAM treatment options, and the safety of treatments. Personal consultation with health-care professionals was the preferred way for obtaining information. The majority of women preferred evidence-based information but there was also a substantial number of women who chose to rely on 'softer' evidence such as personal accounts. These results suggested two different subgroups; however, the data indicate that these are not mutually exclusive since many respondents showed a preference for both types of information. CONCLUSIONS: Women feel they are not sufficiently informed to make safe decisions regarding CAM treatment options to alleviate menopausal symptoms. Family physicians are a trusted information source and have an important role in providing women with that information. Brochures containing evidence-based information and a list of newsletters or books that include personal accounts, available in physician's offices and during personal consultations at women's health centers, are offered as a possible solution. A website is another possibility for distributing this information.

Qualitative research in inflammatory bowel disease: dispelling the myths of an unknown entity.

The potential for qualitative research in the field of inflammatory bowel disease has been overlooked due to a misunderstanding of the methods and intent of this approach. In this paper, we provide a brief overview of qualitative research and address some of the misconceptions and criticisms that we have come across during our use of qualitative research methods in inflammatory bowel disease research.

Response rates for surveys of chiropractors.

BACKGROUND: Survey response rates may vary by type of practitioner studied and may have declined over time. Response rates for surveys of complementary practitioners have not been studied. OBJECTIVE: To describe the response rates in published surveys of chiropractors and explore for secular trends in response rates and for methodologic and geographic correlates of response rates. METHODS: Secondary analysis of data extracted from published English language reports of surveys of chiropractors. Response rates were calculated as the total number of persons from whom a questionnaire was returned divided by the total number of persons who were sent a questionnaire. RESULTS: Sixty-two surveys represented by 79 articles published in the interval 1980 to 2000 met inclusion criteria for analysis. We were able to calculate a response rate for 46 postal surveys. The mean response rate was 52.7%. There was no significant association between geographic setting and response rate, and there was no evidence of secular trend in response rates. None of the studies employed incentives. The strongest predictor of response rate was number of contacts with the target population. CONCLUSION: Response rates for surveys of chiropractors are similar to those observed for surveys of medical doctors. The key to obtaining high response rates is the use of evidence-based methods in design and conduct of the surveys.

Cannabis use as described by people with multiple sclerosis.

BACKGROUND: Multiple sclerosis (MS) is one of the most common neurological diseases affecting young adults. The prevalence of MS in Alberta has been described as among the highest reported in the world, estimated at 217 per 100,000. Numerous anecdotal reports, and a few small empirical investigations have suggested that cannabis use may relieve the symptom experience of those with MS. The present study was undertaken to describe cannabis use by this patient group. Information on peoples' beliefs, practices and experiences related to use were investigated. METHODS: A questionnaire was mailed to a sample of 780 adults with MS in southern Alberta, Canada. RESULTS: Completed questionnaires were returned by 420/673 eligible subjects (response rate 62%). Mean sample age was 48 years and 75% were women. Respondents ranged from mildly to severely impaired. The majority of respondents (96%) was aware cannabis was potentially therapeutically useful for MS and most (72%) supported legalization for medicinal purposes. Forty-three percent had tried cannabis at some point in their lives, 16% for medicinal purposes. Symptoms reported to be ameliorated included anxiety/depression, spasticity and chronic pain. Reasons given for not trying cannabis were the fact that it is an illegal substance, concern about side effects and lack of knowledge on how to obtain it. CONCLUSIONS: Subjective improvements in symptom experience were reported by the majority of people with MS who currently use cannabis. Further evaluation of this substance is warranted.

Inflammatory bowel disease patients' decisions to use complementary therapies: links to existing models of care.

OBJECTIVE: In this paper we present emergent categories of factors that influence inflammatory bowel disease patients' decisions to use complementary therapies and discuss similarities between this work and existing models of care. METHODS: This combined methods study consisted of a quantitative survey followed by qualitative interviews. The results of the qualitative interviews are reported in this article. RESULTS: Major categories that emerged during qualitative analysis were the personal context (i.e. contextual issues that influenced the individual's experience of illness), impact (i.e. the impact that the experience of illness had on the individual), and action (i.e. actions taken to manage the individual's illness). DISCUSSION: Research in the areas if complementary therapy, biopsychosocial models, and patient-centered care, point to the importance of patient-physician communication. Our findings with people who have inflammatory bowel disease are in alignment with this previous body of work. By investigating the reasons for using complementary therapies among people who have a chronic illness, we make a substantive contribution to a growing body of literature that supports the need for continued emphasis on strengthening patient-physician relationships.

Use of chelation therapy after coronary angiography.

PURPOSE: Among patients who had undergone coronary angiography, we sought to determine the proportion of chelation therapy users, their sociodemographic and clinical characteristics, and the association of chelation therapy with subsequent revascularization. METHODS: We studied all patients who underwent coronary angiography in the province of Alberta, Canada, during 1995 and 1996. The cohort was followed for up to 6 years to determine subsequent revascularization status. Use of chelation therapy was determined by a mailed survey 1 year after angiography. RESULTS: Among the 5854 patients who responded to the mail survey (70% response rate), 210 (3.6%) reported current use of chelation therapy and 252 (4.3%) reported past use. Current use of chelation therapy was associated with extensive coronary artery disease (adjusted odds ratio [OR] = 3.3; 95% confidence interval [CI]: 1.9 to 5.7 for 3-vessel disease; and OR = 2.7; 95% CI: 1.2 to 6.0 for left main disease, as compared with those with normal anatomy) and the absence of diabetes (OR = 0.6; 95% CI: 0.4 to 0.9). Current users were less likely to have undergone percutaneous transluminal coronary angioplasty (OR = 0.7; 95% CI: 0.5 to 0.9) and coronary artery bypass graft (CABG) surgery (OR = 0.3; 95% CI: 0.2 to 0.5) in the first year after angiography, but were as likely as nonusers of chelation therapy to have undergone CABG surgery in the subsequent 3- to 5-year period (adjusted hazard ratio [HR] = 1.1; 95% CI: 0.7 to 1.9). Past use of chelation therapy was associated with a history of CABG surgery before coronary angiography (OR = 1.6; 95% CI: 1.1 to 2.3) and extensive coronary artery disease. Past users were also more likely to have undergone CABG surgery in the follow-up period (HR = 1.7; 95% CI: 1.1 to 2.6). CONCLUSIONS: About 8% of patients who underwent cardiac catheterization for coronary artery disease were using or had previously tried chelation therapy. Users may have foregone revascularization in favor of this less invasive yet unproven treatment, with some users subsequently undergoing conventional treatment after chelation. Alternatively, some patients may have turned to chelation as a "last resort" after having been judged unsuitable for revascularization.

Attitudes toward smoking and smoking behaviors of patients with Crohn's disease.

OBJECTIVE: To examine the smoking behaviors of people with Crohn's disease. In active smokers, we measured their willingness to quit, their degree of nicotine dependence, and the proportion that made a quit attempt within 6 months to determine if they were refractory to smoking cessation in comparison to the general population. We also examined factors that were important in their decision to smoke. METHODS: We conducted a cross-sectional survey of out-patients, supplemented by telephone interviews and a 6-month follow-up questionnaire of active smokers. Measures included disease activity, current smoking behaviors, intentions (stage of change), Fagerstrom Test for Nicotine Dependence, and factors related to their decision to smoke (decisional balance). RESULTS: The questionnaire was completed by 115 patients (78% response rate). Forty percent were active smokers. Of active smokers, 59% were considering quitting within the next 6 months, and of these, 15% were planning on quitting within the next 30 days. Those with moderate disease activity were more likely to be considering quitting than those with mild or severe activity. Nicotine dependence was rated as high in 33% and as moderate in 43%. Factors unrelated to Crohn's disease were more important in their decision to smoke than were Crohn's disease-related factors. After 6 months, 23% had made an attempt to quit and this attempt was strongly associated with their stated intentions at the baseline questionnaire. Two of three patients who had recently quit at baseline had resumed smoking. CONCLUSION: When compared to similar data for the general population, patients with Crohn's disease are no more refractory to smoking cessation.

Patient outcomes related to percutaneous endoscopic gastrostomy placement.

Although many aspects of percutaneous endoscopic gastrostomy (PEG) have been addressed in the literature, attention to psychologic and social outcomes of PEG has been limited. Our goal was to assess a range of physical, psychologic, and social outcomes related to PEG feeding. This study is a follow-up survey of patients undergoing PEG and/or their surrogates. Data were collected by semistructured interviews in two tertiary hospitals in Alberta, Canada. Measurements consisted of PEG status at 1-year follow-up, quality of life, impact on caregivers, and opinions about long-term support via PEG. We included 71 patients in the study. Of all 39% of patients died, 32% had the PEG still in place, and for 28% the PEG was removed at the end of the 1-year follow-up. The prognosis of the attending physician at the initial visit and the underlying disease were significantly related to the outcome (p < 0.05). After 1 year, 85% of all patients whose PEGs were still in place, were not working or studying or managing their own household in any capacity, 67% were not managing personal care, and 19% were feeling very ill. Fifty-two percent of the caregivers spent 15 hours or more per week visiting and caring for the patient. At the 1-year follow-up, all ten surviving patients who could be interviewed agreed they would have a PEG again. Seventy percent of the caregivers said that they would want the same decision to be made. Although a majority of patients and caregivers did not regret the decision to place a PEG, this did not necessarily mean enhanced quality of life. Developing strategies to select patients who will benefit from long-term nutritional support could improve patient outcomes.

Canadian Cancer Society Information Services: lessons learned about complementary medicine information needs.

The use of complementary and alternative medicine (CAM) in cancer patients is very common. However, currently valid and reliable information on CAM treatments for cancer is limited. The purpose of this study was to identify the information needs those who called the Canadian Cancer Society's Cancer Information Service (CIS) requesting information on CAM. CIS Information Specialists completed two-page questionnaires for 109 callers who inquired about CAM therapies. Findings show that the majority of callers were women between the ages of 30 and 59, and that most of their questions concerned the safety and/or effectiveness of herbs and compounds like Essiac and 714X. Information Specialists generally utilized one or more of four resources upon receiving a CAM-related call. These resources, while mostly Canadian and reviewed by content experts, are not specific to the type of cancer and are no longer the most up- to-date. To address this issue we have included an appendix that outlines some current CAM resources and websites for cancer patients.

Chiropractic treatment of patients younger than 18 years of age: Frequency, patterns and chiropractors' beliefs.

OBJECTIVES: To explore how and when chiropractors are involved in the care of patients younger than 18 years of age, and to examine chiropractors' beliefs about treating paediatric patients. DESIGN: A cross-sectional survey of a random sample of 140 chiropractors practising in Alberta. Data were collected by means of a mailed questionnaire, which elicited practice information and chiropractors' beliefs, and included closed-and open-ended questions related to six vignettes of paediatric health problems. RESULTS: Fifty-seven per cent of chiropractors responded to the questionnaire. All chiropractors indicated that they treat patients younger than 18 years of age. Nine per cent of respondents do not treat patients younger than age two years, and 4% do not treat patients from ages six to 11 years. On average, 13% of chiropractors' total patient load over the month preceding the completion of the questionnaires consisted of patients younger than the age of 18 years. With increasing age, patients are more likely to present with musculoskeletal problems (23% of patients younger than age two years, 84% of those aged 14 to 17 years). Chiropractors reported that they provided musculoskeletal treatment regardless of the cause of the problem. A high percentage of chiropractors refer to physicians and reported that they would like to provide concomitant care with physicians. CONCLUSION: The present study has shown that chiropractors do treat children and that their opinions about this practice vary by specific condition. In addition, substantial percentages of chiropractors indicated that they would like to work with physicians in treating patients with nonmusculoskeletal conditions.

Defining the role of fiberoptic sigmoidoscopy in the investigation of patients presenting with bright red rectal bleeding.

OBJECTIVE: This study was done to determine whether sigmoidoscopy could theoretically constitute sufficient investigation for some patients with bright red rectal bleeding. METHODS: One hundred and forty-three patients undergoing investigative colonoscopy for bright red rectal bleeding and whose source of bleeding was identified were studied. The investigation took place in a large urban hospital over an 11-month period. Data obtained included changes in stool pattern, characteristics of the bleeding, lesions identified, and the distance of the lesion from the anus. RESULTS: In patients younger than 55 yr, all serious lesions except for one malignancy in a patient with massive bleeding lay within 60 cm of the anus and theoretically within reach of the fiberoptic sigmoidoscope. The mixing of red blood with stool was commonly due to distal lesions, especially hemorrhoids. CONCLUSIONS: In young persons with bright red rectal bleeding, fiberoptic sigmoidoscopy may prove to constitute appropriate initial investigation.

Gastric cancer and other endoscopic diagnoses in patients with benign dyspepsia.

BACKGROUND: It has been suggested that endoscopy could be replaced with non-invasive assessment of helicobacter status in the initial work up of young dyspeptic patients without sinister symptoms. AIMS: To determine the incidence of gastro-oesophageal malignancy in young dyspeptic patients. METHODS: The Alberta Endoscopy Project captured clinical and demographic data on all endoscopies performed from April 1993 to February 1996 at four major adult hospitals in Alberta. The endoscopic and histological diagnosis in a subgroup of patients under 45 years of age without alarm symptoms that had undergone gastroscopy was reviewed. In addition, a random list of 200 patients was generated and their medical records reviewed in order to assess the proportion with symptoms suitable for a non-invasive management strategy. RESULTS: Gastroscopy was performed in 7004 patients under 45 years. In 3634 patients (56% female) alarm type symptoms were absent; 78.9% of patients had symptoms amenable to a non-invasive initial approach, giving a corrected sample size of 2867 patients (correction factor 0.789). Three gastric cancers, one case of moderate dysplasia, 10 biopsy proved cases of Barrett's oesophagus, and 19 oesophageal strictures/rings were detected within this sample. The corrected prevalence of gastric cancer in this select population was 1.05 per thousand patients. DISCUSSION: Endoscopy yielded three gastric cancers in this sample of under 45 year old dyspeptic patients without sinister symptoms. While initial non-invasive screening with one-week triple therapy for helicobacter positive individuals is unlikely to have a detrimental outcome the physician is advised to consider endoscopy in patients with persisting, recurrent, or sinister symptoms.