Fredrick D. Ashbury

A Canadian Survey of Cancer Patients’ Experiences: Are Their Needs Being Met?

Cancer patients (n = 913) who received treatment within the previous 2 years were interviewed to quantify reports of symptoms associated with cancer, measure the impact of symptoms on lifestyles, document experiences with accessing information and treatment for cancer and its symptoms, and record attitudes about the level of care received. Cancer patients were primarily recruited through newspaper ads placed throughout Canada and asked to complete a self-report questionnaire. Patients called a toll-free number and were interviewed to ensure eligibility. Most respondents were female (66%) with breast cancer (64%). Prostate cancer (40%) was the most common diagnosis among males. Almost all respondents (94%) reported experiencing one or more symptoms. Fatigue and anxiety were the most frequently reported symptoms (78% and 77%, respectively). Fatigue was most likely to be self-rated as moderate to severe and was most likely to interfere in normal daily activities. Respondents who experienced fatigue reported a more frequent use of healthcare services (including complementary therapies) than those who did not experience fatigue. Half of the respondents reported trying to find information on fatigue, but only half of these said they had obtained information. The most helpful sources of information were nurses, specialists, and other cancer patients. Respondents were more likely to be dissatisfied with their treatments for their symptoms than for their cancer. This survey indicates that most cancer patients experience symptoms related to the disease and its treatment. The most prevalent symptoms are fatigue and anxiety; fatigue is the most debilitating.

Personalised medicine in Canada: a survey of adoption and practice in oncology, cardiology and family medicine.

Introduction In order to provide baseline data on genetic testing as a key element of personalised medicine (PM), Canadian physicians were surveyed to determine roles, perceptions and experiences in this area. The survey measured attitudes, practice, observed benefits and impacts, and barriers to adoption. Methods A self-administered survey was provided to Canadian oncologists, cardiologists and family physicians and responses were obtained online, by mail or by fax. The survey was designed to be exploratory. Data were compared across specialties and geography. Results The overall response rate was 8.3%. Of the respondents, 43%, 30% and 27% were family physicians, cardiologists and oncologists, respectively. A strong majority of respondents agreed that genetic testing and PM can have a positive impact on their practice; however, only 51% agreed that there is sufficient evidence to order such tests. A low percentage of respondents felt that they were sufficiently informed and confident practicing in this area, although many reported that genetic tests they have ordered have benefited their patients. Half of the respondents agreed that genetic tests that would be useful in their practice are not readily available. A lack of practice guidelines, limited provider knowledge and lack of evidence-based clinical information were cited as the main barriers to practice. Differences across provinces were observed for measures relating to access to testing and the state of practice. Differences across specialties were observed for the state of practice, reported benefits and access to testing. Conclusions Canadian physicians recognise the benefits of genetic testing and PM; however, they lack the education, information and support needed to practice effectively in this area. Variability in practice and access to testing across specialties and across Canada was observed. These results support a need for national strategies and resources to facilitate physician knowledge, training and practice in PM.

QOLLTI-F: measuring family carer quality of life

Background: The primary goal of palliative care is to optimize the quality of life (QOL) of people living with a life-threatening illness and that of their families. While there have been important advances in measurement of the QOL of palliative care patients, little attention has been paid to the QOL of their carers (family caregivers). To develop and deliver the most effective services to these carers, their QOL needs to be measured with acceptable and psychometrically sound instruments that have content validity. Methods: This study reports three phases of the development and testing of such a measure: QOLLTI-F, Quality of Life in Life Threatening Illness -Family Carer Version, simultaneously in English and French. Participants were carers from 12 Canadian palliative care services who were asked to complete QOLLTI-F on three occasions. Results: The final version of QOLLTI-F consists of 16 items. It was deemed acceptable by the vast majority of carers and a longer, 24-item version was completed in a median of 12 min. Content validity was assured by inclusion of all domains reported by carers to be important to their QOL: state of carer, patient wellbeing, quality of care, outlook, environment, finances and relationships. Construct validity was demonstrated, as principal components analysis indicated that the 16 items did indeed reflect these seven domains. Furthermore, the seven domain scores predicted 53% of the variance in global QOL, although the QOLLTI-F Total score predicted less well (43%). The test-retest reliability for the QOLLTI-F Total score was 0.77-0.80 and ranged from 0.50 to 0.79 for the seven domain scores. All QOLLTI-F scores were shown to be significantly different between days the carers considered bad, average and good, demonstrating responsiveness to change, with the exception of the Financial Concerns submeasure, which did not distinguish between average and good days. Conclusions: QOLLTI-F is unique in that in measuring one person’s QOL (the carer’s) it includes their perception of the condition of another (the patient). This attests to the close relationship between the two. It is also unique in that its content is derived from a qualitative study asking carers what is important to their own QOL, rather than focusing on the changes or burdens related to caregiving. QOLLTI-F also has the advantage of being briefer than other carer QOL measures. It contains measures of seven different domains that are determinants of carer QOL, in addition to a summary score. All these measures are valid, reliable and responsive to change in QOL.

Effective Components for Nutrition Interventions: A Review and Application of the Literature

A review of the nutrition intervention literature was conducted for Cancer Care Ontario (CCO) to develop a provincial nutrition and healthy body weight strategy. Controlled trials that were conducted between 1994 and 2000 in North America, Europe, Australia, and New Zealand were included. Fifteen interventions were included, 10 of which showed significant intervention effect and 5 reporting negative effect. Elements of effective interventions included theoretical basis, family involvement, participatory planning and implementation models, clear messages, and adequate training and ongoing support for intervenors. CCO applied these practices to design a pilot intervention. Stakeholders participated in the intervention design and tested for clear messaging. Consistent with social cognitive theory, the intervention included activities for children and parents and provided environmental supports such as transportation and child care. Training and support for implementers and evaluators was provided by CCO.

Assessing the evidence for organised cancer screening programmes

The aim of this study was to review the evidence in the literature for organised cancer screening programmes. A Medline search for publications related to organised cancer screening programmes and their components was done. While there is a broad descriptive literature on various cancer screening programmes, there are few published studies that evaluate the impact of organised cancer screening. Most of the evidence to date is from Scandinavian cervical and breast cancer screening programmes. There is a moderate amount of literature that evaluates specific components of cancer screening programmes (such as quality control and recruitment). There is a substantial body of literature on organised cancer screening programmes. However, the studies tend to describe organised screening programmes rather than evaluate their effectiveness relative to opportunistic screening. Furthermore, most studies focus on individual components of organised screening programmes, rather than on the programmes as a whole. More research is needed that directly compares organised with opportunistic cancer screening.

Designing a framework for the delivery of collaborative musculoskeletal care involving chiropractors and physicians in community-based primary care.

Strategies have been proposed to facilitate collaboration between conventional health care providers in primary care. However, little is known if these are transferable to CAM health care providers. We designed a qualitative study to articulate a conceptual model to advance the interprofessional collaboration between physicians and chiropractors within community-based primary care in Ontario, Canada. Data obtained from 16 key informants and eight focus groups, with a range of professionals including chiropractors, physicians and academia as well as patients, informed the development our framework. The framework included processed-based factors that clustered under three categories: communication, practice parameters, and service delivery; presumed necessary to address challenges and optimize benefits of collaboration. The development of this framework may help understand and promote interprofessional collaborative practice and contribute to the understanding of how CAM may participate in mainstream healthcare.

Benefits, issues, and recommendations for personalized medicine in oncology in Canada

The burden of cancer for Canadian citizens and society is large. New technologies have the potential to increase the use of genetic information in clinical decision-making, furthering prevention, surveillance, and safer, more effective drug therapies for cancer patients. Personalized medicine can have different meanings to different people. The context for personalized medicine in the present paper is genetic testing, which offers the promise of refining treatment decisions for those diagnosed with chronic and life-threatening illnesses. Personalized medicine and genetic characterization of tumours can also give direction to the development of novel drugs. Genetic testing will increasingly become an essential part of clinical decision-making. In Canada, provinces are responsible for health care, and most have unique policies and programs in place to address cancer control. The result is inconsistency in access to and delivery of therapies and other interventions, beyond the differences expected because of demographic factors and clinical education. Inconsistencies arising from differences in resources, policy, and application of evidence-informed personalized cancer medicine exacerbate patient access to appropriate testing and quality care. Geographic variations in cancer incidence and mortality rates in Canada-with the Atlantic provinces and Quebec having higher rates, and British Columbia having the lowest rates-are well documented. Our purpose here is to provide an understanding of current and future applications of personalized medicine in oncology, to highlight the benefits of personalized medicine for patients, and to describe issues and opportunities for improvement in the coordination of personalized medicine in Canada. Efficient and more rapid adoption of personalized medicine in oncology in Canada could help overcome those issues and improve cancer prevention and care. That task might benefit from the creation of a National Genetics Advisory Panel that would review research and provide recommendations on tests for funding or reimbursement, guidelines, service delivery models, laboratory quality assurance, education, and communication. More has to be known about the current state of personalized cancer medicine in Canada, and strategies have to be developed to inform and improve understanding and appropriate coordination and delivery. Our hope is that the perspectives emphasized in this paper will stimulate discussion and further research to create a more informed response.

The MASCC/ISOO Mucositis Guidelines: dissemination and clinical impact

This editorial introduces the second set of articles related tothe update of the clinical practice guidelines for mucositis,developedbythe MucositisStudy Groupofthe MultinationalAssociation of Supportive Care in Cancer/International Soci-etyofOralOncology(MASCC/ISOO).ThefirstsetofarticleswaspublishedinaspecialsectionoftheJanuary2013issueofSupportive Care in Cancer. The January 2013 articles report-ed on the methods used, considerations driving the update ofthe mucositis guidelines, results related to gastrointestinalmucositis, as well as several classes of interventions for oralmucositis including oral cryotherapy, laser and other lighttherapy, cytokines and growth factors, and amifostine [1–8].In the current special section of this issue, we present theremaining articles related to this update that focus on: oralhygiene maintenance, use of several additional classes ofinterventions, as well as pathogenesis of mucositis and riskof oral mucositis in patients receiving targeted therapies.Basic oral care is widely acceptedas good clinical practiceinoncology(andother)patients.ThearticlebyMcGuireetal.examines the evidence on whether oral hygiene maintenancecan actually reduce oral mucositis severity. A suggestion wasdeveloped in favor of using oral care protocols for theprevention of oral mucositis in all age groups and across allcancer treatment modalities. However, no guideline was pos-sibleforspecificagentssuchassalineandsodiumbicarbonatemouthwashes, which are commonly used in clinical practicefor oral hygiene maintenance. Next, Nicolatou-Galitis et al.reviewthe use of anti-inflammatory agentsfor oralmucositis.Although itis wellacceptedthat inflammatory pathwaysplayaroleinthepathogenesisofmucositis,evidencerelatedtotheuse of anti-inflammatory agents is insufficient and/orconflicting. The only guideline possible in favor of an agentwasacontinuationofapreviousguidelinerelatedtotheuseofbenzydamine mouthwash for the prevention of oral mucositisin head and neck cancer patients receiving moderate-doseradiation therapy (up to 50 Gy), without concomitant chemo-therapy. Saunders et al. present an overview of the evidencerelated to a number of classes of agents including antimicro-bials, mucosal coating agents, anesthetics, and analgesics.Guidelines were developed in favor of some analgesic agentsfor relief of pain due to mucositis. In contrast, the evidencesupported recommendations against the use of topical antimi-crobial agents (for mucositis) and the mucosal coating agentsucralfate.Yarometal.examinetheuseofproductsofnaturalorigin for mucositis. The evidence supported a new sugges-tion in favor of systemic zinc in patients receiving head andneck radiation and a recommendation against intravenousglutamine in patients receiving hematopoietic stem cell trans-plant. Jensen et al. present results related to miscellaneousagents that did not fall into any of the previously discussedcategories. Two agents, pilocarpine and pentoxifylline, werefound to be ineffective while no guideline in favor of anymiscellaneous agent was possible.In addition to the sectionsexamining various interventionsfor mucositis, we alsohad two additional groups. Al-Dasooqiet al. reviewed the preclinical and clinical literature related tothepathogenesisofmucositis.Thecurrentstatusoftheknowl-edge on the pathogenesis of mucositis is presented in theirmanuscript. Finally, Elting et al. examine the risk of oral and

Helicobacter pylori and the prevention of gastric cancer.

BACKGROUND Helicobacter pylori is an important cause of stomach cancer that infects a substantial proportion of the Canadian adult population. H pylori can be detected by noninvasive tests and effectively eradicated by medical treatment. Screening for and treatment of H pylori may represent a significant opportunity for preventive oncology. METHODS Cancer Care Ontario organized a workshop held in Toronto, Ontario, on October 24 and 25, 2002, to: review the current state of knowledge regarding H pylori treatment and cancer prevention; determine if there is currently sufficient evidence to consider the promotion of H pylori treatment for the purpose of cancer prevention; identify critical areas for research; and advise Cancer Care Ontario on H pylori and cancer prevention. RESULTS Workshop participants developed a number of recommendations for research into the relationship between H pylori and stomach cancer, including determining the prevalence of infection in different regions of Canada, the pathogenetic sequence of carcinogenesis from H pylori infection, and the implementation of a prospective observational study. INTERPRETATION Although the rate of H pylori infection is declining in Canada and the treatment of H pylori is generally accepted to be safe, the evidence to date may not warrant the implementation of population screening for H pylori infection to prevent gastric carcinoma in average-risk populations. Rather, a demonstration project is needed to estimate prevalence, evaluate the merits of screening, measure patient compliance and physician participation, develop education materials, establish a registry for monitoring and evaluation, and develop a quality assurance framework.

Comparing alternative design options for chronic disease prevention interventions

While the randomized clinical trial is considered to provide the highest level of evidence in clinical medicine, its superiority to other study designs in the context of prevention studies is debated. The purpose of this review was (i) to gather evidence about challenges facing both randomized controlled trials and observational designs for the conduct of population‐based chronic disease prevention interventions and (ii) to consider the suitability of recently proposed hybrid designs for population‐based prevention intervention studies.