Lay constructions of decision-making in cancer

In recent years there has been increased emphasis on involving people in decision-making about their medical care. However, few studies have addressed the questions of why women with cancer want information, and what they believe to be the important factors influencing their decision-making. In order to examine these questions 20 women with cancer were interviewed via telephone 2 weeks after their first consultation with one of 6 medical oncologists. Recruitment continued until informational redundancy was achieved. While women cited the risk of recurrence, life expectancy, side-effects, and quality of life as influencing their decisions, they placed at least as much emphasis on their personal relationship with the specialist. These 'personal' factors included: feeling that the doctor cared for, understood and respected them; that they could trust and have confidence in the doctor; that the doctor would give them enough time; that they would be listened to; and that the doctor would be open and honest. If these factors were felt to be present, many women were happy to accept the doctor's recommendation, confident that they would receive the optimum treatment. However, many women felt there was no decision to be made: further treatment must be undertaken to reduce risk, and minor variations in the treatment protocol were of little significance. These results underline the importance of establishing patient priorities and concerns before embarking on discussions about treatment.     

Why do men choose one treatment over another?: a review of patient decision making for localized prostate cancer

Treatment choices for localized prostate cancer appear to vary widely, although it is unclear whether this variation is a result of patient values or other factors. The authors conducted a systematic review of the literature, identifying 70 articles that focused on prostate cancer decision making. Studies suggest that men consider several issues when making treatment decisions. The authors found conflicting evidence regarding the importance that men place on cancer eradication, with considerable variation in how patients interpret evidence regarding treatment efficacy. The number of physicians that men see and the importance of the physician recommendation were found to vary considerably. Although men stated that side effects are important, few patients reported that side effect factors ultimately influenced their treatment choice. To the authors' knowledge, there is little research regarding how patients' personal values shape and influence their decision, or the role of race/ethnicity or socioeconomic status in preferences for treatment. The authors conclude that variations in treatment decisions may be more indicative of differences in the information patients receive rather than truly reflective of underlying patient preferences. Considerable progress is needed in helping patients fully understand how to balance the complex issues surrounding prostate cancer treatment decision making.     

Shared decision-making in metastatic breast cancer: discrepancy between the expected prolongation of life and treatment efficacy between patients and physicians, and influencing factors

Treatment decisions in oncology are based on a balance between the efficacy of therapy and its side effects. Patients with metastases and patients with a limited prognosis are a particular challenge, since communication about the disease situation and the expected therapeutic benefit is difficult not only for patients, but also for physicians. The aim of this study was therefore to compare the benefits expected of therapy by patients and physicians. Questionnaires were sent to 9,000 breast cancer patients and to 6,938 physicians. The questionnaires described 10 cases of breast cancer in the metastatic setting. The patients and physicians were asked to state the treatment benefit they would require to decide for the therapy options chemotherapy, endocrine therapy, antibody therapy, radiotherapy, and bisphosphonates. Additionally, the participants provided data on patient and physician characteristics. Expected treatment benefits were compared between patients and physicians, and influencing factors that modified the expected benefit were identified. Patients expected much greater benefits from the therapies offered than the physicians. For all treatment modalities, about 50 % or more of patients expected more than a 12-month increase in overall survival from all therapies. Among the doctors, this proportion ranged from 7 to 30 %. Among patients, previous experience of side effects and having young children in the family were the strongest influencing factors. Among the doctors, age and level of education had a strong influence on the expected prognostic improvement to indicate a therapy option. As expectations of treatment differ greatly between patients and doctors, a structured approach to solving this conflict is required. There appear to be some indicators that might help address the problem, such as the physicians’ level of training and experience and the patients’ specific social circumstances.     

Cancer patients' decisions about discussing Internet information with their doctors

Objective: To explore cancer patients' and caregivers' decisions regarding whether to discuss cancer‐related information they found on the Internet with their doctors. Methods: 238 participants (cancer patients and caregivers) from three online cancer communities responded to a survey about their experiences finding information on the Internet about their cancer and their reasons for discussing or not discussing that information with their doctors. The reasons were coded into mutually exclusive categories. Results: Participants most frequently reported discussing information in order to be proactive in improving their health. Other reasons included appealing to the doctor as expert, wanting to become more educated, meeting a psychological or coping need, and checking up on or testing the doctor. Of the participants, caregivers were more likely than patients to cite checking up on or testing the doctor as a reason for discussing Internet information. Sixty‐two percent of participants reported sometimes or never talking about Internet information that they thought was important with their doctors. Across all participants, the most frequently reported reasons for not talking about Internet information were attributions about the information and systems‐related reasons. Participants who reported information attribution as a reason for not discussing it with their doctors had higher overall comfort levels with these types of discussions. Conclusions: Many factors influence cancer patients' and caregivers' decisions about discussing Internet information with their doctors. The coherence of the reasons across the communities in this study and in other studies suggests that this typology of reasons is both thorough and valid. Copyright © 2009 John Wiley & Sons, Ltd.     

Building bridges between physicians and patients: results of a pilot study examining new tools for collaborative decision making in breast cancer.

PURPOSE: To present the results of a pilot study testing an intervention designed to improve the quality of medical consultations between breast cancer patients and physicians and, in particular, to report the effects of the intervention on the quality of treatment decisions, the quality of communication, and the satisfaction of patients and physicians. PATIENTS AND METHODS: We enrolled 24 predominantly white, well-educated, early-stage breast cancer patients who were facing local or systemic treatment decisions in a sequential, controlled trial. All patients received a visit preparation session before the consultation in which a trained researcher helped patients organize their questions and concerns. In the control, a researcher observed the consultation. In the intervention, a researcher helped create an agenda, facilitated the discussion, and created a record of the consultation in real time. Valid and reliable surveys measured the quality of treatment decisions and satisfaction with the consultation. RESULTS: Patients in the intervention achieved significantly higher final decision quality scores compared with control patients (median score, 14 v 10, respectively; P =.008) and a significantly higher level of intersubjective agreement with their physicians about decision quality (Cohen's kappa, 0.49 v 0.285, respectively; P <.0001). Consultation recording methods did not affect the length of time required for the consultation. CONCLUSION: Consultation recording methods provide a promising innovation for medical consultations. Further studies are warranted to broaden the findings, assess impacts on the quality of decisions, cost, and health, and develop practical ways to integrate consultation recording methods into clinics.     

Telling the diagnosis of cancer

Although a concensus has emerged in this country that patients should be told when cancer is discovered, no data is available to indicate how and where patients are currently told that they have cancer. Fifty-five patients undergoing anticancer therapy were therefore interviewed to learn how this process occurs. The majority of patients were told by surgeons (74%) and only a minority by primary care physicians (11%). Most were told in a traditional medical setting (42% in the doctor's office, 17% in a hospital room), but 23% were told over the telephone and 19% in the recovery room. Two indicators of patient satisfaction with the telling process suggested that different sites of telling were not equivalent. Patients told over the telephone or in the recovery room were more likely to describe the telling in negative terms and less likely to describe their doctors as being helpful in understanding their illness than those told in a doctor's office or in their hospital bed. This pilot study indicates considerable variation in this aspect of patient care and suggests directions for future research. To determine whether interviews that explore these issues with cancer patients are unpleasant or stressful, patients' reactions to being subjects in this study were sought. Patients asked directly at the completion of the interview or surveyed 2 to 4 months later said the interview had been helpful and/or a positive experience. None expressed negative feelings about participating. Concerns about the psychological harm resulting from such study of this patient group do not appear to be warranted and should not impede future research.     

Colorectal Cancer Screening: Patients' and Physicians' Perspectives on Decision-Making Factors

While patient barriers to colorectal cancer (CRC) screening have been identified, how well this knowledge is utilized during the patient–physician interaction is not fully understood. This study aims to assess among primary care physicians the degree of consensus between perceived and actual patients' CRC screening decision-making influential factors. During 2004–2006, 30 patients were interviewed to identify factors influencing screening decisions and 66 physicians were interviewed to understand what factors they thought were important to patients. The factors were categorized using the PRECEDE–PROCEED framework, and perspectives were compared. The researchers found little consensus on CRC screening decision-making influential factors between family practitioners, general internists, and patients. The recommendations to reach consensus are provided on the individual (e.g., updating the contents of a physician's screening recommendation to proactively address patients' decision-making needs) and population (e.g., providing cross-cultural training to medical students enabling them to better understand their patients) levels.     

Symptom Perceptions and Help-Seeking Behaviours of Omani Patients Diagnosed with Late-Stage Colorectal Cancer: A Qualitative Study

Objective: Colorectal cancer (CRC) is the fourth leading cause of mortality in Oman, with most patients diagnosed at advanced stages. Early diagnosis of CRC improves prognosis and survival rate. The aim of this study was to explore the symptom perceptions and help-seeking behaviours (HSBs) of Omani patients diagnosed with late-stage CRC. Methods: Semi-structured individual interviews were conducted with 16 patients. Results: Four main themes emerged, including normalisation and ignorance (patients felt healthy, perceived symptoms as not being serious and related to dietary habits, concealed them or prioritised work and family commitments), self-empowerment and self-management (patients were stubborn, employed ‘wait and see’ approach, used symptomatic or herbal treatments), disclosure and seeking help (patients disclosed symptoms to family members or friends, sought medical help only when symptoms worsened, visited faith healers or travelled abroad for treatment) and healthcare professionals (patients attributed treatment or diagnosis delays to lack of continuity of care, loss of trust in doctors or delays in referral). Conclusion: Patients attributed delays in CRC diagnosis to several factors based on their perceptions of symptoms. Most HSBs driven by sociocultural and emotional causes. Increased awareness of CRC symptoms and modifying HSBs can encourage early diagnosis. Prompting patients to disclose CRC-related symptoms may aid referral decisions.     

Doctor-patient communication about breast cancer adjuvant therapy

Candidates for breast cancer adjuvant therapy must not only grapple with the concept of micrometastatic disease, but often must consider the benefits and risks of clinical trials and alternatives. We studied 100 consecutive patient-physician encounters about adjuvant therapy to determine how well we informed patients about benefits and risks and how clearly we recommended treatment. Evaluation included observation and audiorecording of encounters, patient- and physician-completed questionnaires, and patient interviews. Patient-physician agreement on the benefits and risks of adjuvant therapy was poor. Sixty percent of patients overestimated their chance of cure by 20% or more compared with the physician. Poor agreement was partially explained by the observation that patients and physicians exchanged little specific information. Furthermore, decision-making was compressed. Although this was the first meeting with a medical oncologist for 79 patients (79%), 82 (82%) made final decisions about treatment by the end of the meeting. Physicians clearly identified their recommended treatment. Patients generally followed the physician's recommendation, except when clinical trials were recommended. Only 45% of trial-eligible patients chose to participate in offered trials. Physician recommendations of clinical trials were not as effectively communicated as nontrial treatments. Nonstandard adjuvant regimens, similar to the experimental arm of some ongoing randomized trials, were recommended to 30% of patients, especially those with a poor prognosis. In essence, physicians acted as if the trial question was answered, thereby diminishing enthusiasm for the trial. The widespread recommendation of nonstandard regimens similar or identical to the experimental arms in ongoing trials suggests a serious lack of consensus on what questions to ask in clinical trials and whether or not those questions have been answered.     

Is adjuvant tamoxifen used optimally in the treatment of breast cancer? Results of an Italian survey

Background: Institutional and physician-related factors can influence the way in which physicians interpret research results. The aim of this study was to determine what physicians know about, and their opinions of, hormone treatment in breast cancer patients, and the factors comprising their medical decision-making.Materials and methods: A questionnaire was mailed to a random sample of physicians inquiring as to their preferences with respect to adjuvant tamoxifen, and the usual duration of the treatment applied in various clinical scenarios (according to a woman's menopausal status, the oestrogen receptor status and the stage of disease).Results: Of 500 physicians identified, 38% returned the questionnaire. Of the non-responders, a random sample of 60 physicians was interviewed by phone. The total number of available questionnaires was 250 (50%).About 3/4 of the doctors would prescribe tamoxifen in older ER+ women and 30%–40% in post-menopausal ERõ- patients, but only 2/5 would do so in younger ER+ women.The vast majority of physicians considered five years as standard for ER+ patients. Nevertheless, about 1/4 of the doctors chose a shorter treatment duration for node-negative, pre-menopausal patients. A minority of physicians used tamoxifen for longer than five years. Older clinicians were less likely to prescribe tamoxifen, particularly for low-risk patients.Conclusions: According to the data of the recent EBCTG overview, an additional 20,000 lives could be saved worldwide each year if tamoxifen were given to all early breast cancer patients with hormone-sensitive disease, irrespective of age and disease stage, and for a minimum of five years.Our study, involving a representative sample of physicians practicing in Italy, shows that tamoxifen is not used optimally, with a substantial under-use in younger women and women with node-negative disease.     

Impact of referral patterns on the use of chemotherapy for lung cancer.

PURPOSE: To determine the extent to which unexplained variation in the use of chemotherapy for advanced lung cancer is due to access to oncologists' services as opposed to treatment decisions made after seeing an oncologist. METHODS: We performed a retrospective cohort study of 12,015 patients over age 65 diagnosed with metastatic lung cancer between 1991 and 1996 while living in one of 11 regions monitored by a Survival, Epidemiology, and End Results (SEER) tumor registry. Assessment by an oncologist and subsequent treatment with chemotherapy were determined by examining linked Medicare claims. RESULTS: Of patients who did not receive chemotherapy, 36% were never assessed by a physician who provides chemotherapy. Patients living in certain areas, those diagnosed in more recent years, and those who received care in a teaching hospital were all more likely to see a cancer specialist. These factors were unrelated to subsequent treatment decisions, however. Conversely, age and comorbidity did not have a significant effect on whether a patient was seen by an oncologist, but they were associated with the likelihood of subsequently receiving chemotherapy. Black race, probably acting as a proxy for lower socioeconomic status, was associated with both a diminished likelihood of seeing a cancer specialist and subsequently receiving chemotherapy. CONCLUSION: Nonmedical factors are important determinants of whether a lung cancer patient is seen by a physician who provides chemotherapy. After seeing such a physician, treatment decisions seem to be mostly explained by appropriate medical factors. Racial and socioeconomic disparities still exist at both steps, however. As therapeutic options expand, referring physicians must ensure that biases and barriers to care do not deprive patients of the opportunity to consider all of their treatment options.     

上海市医师对癌症疼痛的认识及治疗状况——2007年调查结果

目的:调查上海市医师对癌症疼痛的认识和治疗现状.方法:2007年1-3月对上海市106所二、三级医院1 982名医师进行癌痛治疗知识及治疗情况的问卷调查并进行统计学分析.结果:对"三阶梯止痛"治疗方案,52.3%的医师表示非常了解,比1999年上升了21.6个百分点,肿瘤科医师的了解程度明显好于非肿瘤科医师; 16.8%的医师对镇痛治疗剂量滴定的3个主要原则回答完全正确,肿瘤科医师回答的正确率高于非肿瘤科医师;强阿片类药物成为医师治疗重度癌痛的首选药物,应用杜冷丁治疗重度癌痛的比率下降;74.8%的患者通过治疗能使疼痛明显减轻,比1999年上升了25.4个百分点;81.1%的医师肯定疼痛治疗效果,肿瘤科医师对治疗效果更为乐观; 93.3%的医师认为有必要继续开展癌痛治疗知识的培训,其中非肿瘤科医师的需求更高.医院和政策法规限制过严是目前使用止痛药物的主要障碍.结论:医师对癌痛的认识和诊治水平较1999年有较大提高,但仍需进一步开展癌痛治疗知识的培训,推广规范性治疗并消除止痛药物的用药障碍.     

Perceptions of patients and physicians regarding phase I cancer clinical trials: implications for physician-patient communication.

PURPOSE: To describe and compare the perceptions of cancer patients and their physicians regarding phase I clinical trials. METHODS: Eligible patients had been offered phase I trial participation and had decided to participate but had not yet begun treatment. Each patient's physician also served as a study subject. Patients and physicians completed questionnaires with domains including perceptions of potential benefit and harm from treatment (experimental and standard), relative value of quality and length of life, and perceived content of patient-physician consultations. RESULTS: Three hundred twenty-eight patients and 48 physicians completed surveys. Patients had high expectations regarding treatment outcomes (eg, median 60% benefit from experimental therapy), with those choosing to participate in a phase I trial being more optimistic than those declining phase I participation. Patients predicted a higher likelihood of both benefit and adverse reactions from treatment (experimental and standard) than their physicians (P <.0001 for all comparisons). Although 95% of patients reported that quality of life was at least as important as length of life, only 28% reported that changes in quality of life with treatment were discussed with their physicians. In contrast, 73% of physicians reported that this topic was discussed (P <.0001). CONCLUSION: Cancer patients offered phase I trial participation have expectations for treatment benefit that exceed those of their physicians. The discordant perceptions of patients and physicians may possibly be explained by patient optimism and confidence; however, the discrepancies in reports of consultation content, particularly given patients' stated values regarding quality of life, raise the possibility that communication in this context is suboptimal.     

Questionnaire survey for doctors in the area of cooporation efforts when a terminal cancer is transformed to home medical care

In order to smoothly transform a terminal cancer patient from hospital to home medical care, we surveyed based on questionnaires to examine doctor's roles of each primary and regional hospitals and its cooperation among the hospitals. We established two types of questionnaires for two groups, a primary doctor group and a regional doctor group, and distributed and collected them. A total of 123 doctors (35 primary doctors and 88 regional doctors) responded out of 185 doctors, and the collection rate was 66.5%. The survey result indicated that there were significant differences among the primary and regional doctors in evaluating patient's family members for understanding of the patients disease at the time of discharge, how to give a treatment to the patient, alleviating patient's disease conditions and a mental support given by doctor to family members from the hospital. Meanwhile, about 70% of regional doctors answered that family members had some sort of anxieties during a night and at the time of emergency to care the patient. It also revealed that about 70% of regional doctors had experienced troubles in coordinating with a primary hospital. On the other hand, 62% of primary doctors answered that they always provided necessary care to the patient at the time of emergency. In providing a safe and a high degree of QOL in home medical care settings, it is important to have specific common purposes among the two groups of doctors and patients. Furthermore, the primary and regional doctors have to be cooperative, specify duty roles when the patient is transformed to home medical care, and to have ways to accomplish mutual common goals for patients.     

Burdens,Needs and Satisfaction of Terminal Cancer Patients and their Caregivers

Objectives: Terminal cancer patients and their caregivers often experience traumatic stress and needmany types of assistance. In the present study we interviewed terminally ill cancer patients and caregiversto determine how much burden they experienced and to find out what factors are most important forsatisfaction. Design: We constructed a questionnaire including overall care burden and needs experienced,and administered it to 659 terminal cancer patients and 659 important caregivers at 11 university hospitalsand 1 national cancer center in Korea. Results: Finally, 481 terminal cancer patients and 381 caregiverscompleted the questionnaire. Care burden was not insubstantial in both and the caregiver group felt moreburden than the patient group (P<0.001). While the patient group needed financial support most (39.0%),the caregiver group placed greatest emphasis on discussion about further treatment plans (44.8%). Stepwisemultiple logistic regression analyses showed that in the patient group, patient’s health status (OR, 2.03;95%CI, 1.16-3.56) and burden (OR, 2.82; 95%CI, 1.76-4.50) influenced satisfaction about overall care,while in the caregiver group, high education level (OR, 1.84; 95%CI, 1.76-4.50), burden (OR, 2.94; 95%CI,1.75-4.93) and good family function (OR, 1.94; 95%CI, 1.24-3.04) were important. Conclusions: Our studyshowed that burden was great in both terminal cancer patients and their caregivers and was perceived to bemore severe by caregivers. Our study also showed that burden was the factor most predicting satisfactionabout overall care in both groups.     

The future of complementary and alternative medicine for cancer

This article explores why cancer patients use complementary and alternative medicine (CAM), why CAM use should be of interest to physicians who treat cancer patients, and how physicians may appropriately support their patients' quest for comfort, quality of life, and healing. We use the term “CAM” to refer to substances and practices that have been available primarily outside of the American medical mainstream, that have sources other than medical doctors and allied health care providers, and that are not commonly recommended by medical doctors as treatments for a given condition. Alternative treatments are those used instead of conventional medicine; complementary treatments are those used in addition to conventional medicine.     

Influence of Patient’s Perceptions,Beliefs and Knowledge about Cancer on Treatment Decision Making in Pakistan

Introduction: Cancer is a cause of major disease burden across the world and Pakistani data suggest that itsincidence is increasing. Pakistan’s socio-cultural history, social practices, religious beliefs and family systemsdiffer in many ways from rest of the world. These factors make the practice of oncology a challenge. Materialsand Methods: A comprehensive questionnaire focusing on socio-cultural and religious aspects was administeredto patients with a diagnosis of cancer and receiving chemotherapy at the Aga Khan University Hospital, Karachi,Pakistan. Results: A total of 230 patients agreed to answer the questionnaire, with a mean age of 46 years and63% were females. Obtaining some formal education was claimed by 87%, 75.2% had received some treatmentbefore seeing an oncologist, including homeopathic physicians and faith healers. Of all 27 % thought that canceris contagious, a fact observed more so in those who were illiterate, 27 % believed in some myth such as past sins,evil eye or God’s curse as to be cause of their cancer, while 39.6% thought that cancer can be prevented by aregular religious activity. Some 30% thought that a meaningful life after diagnosis of cancer was not possibleand 28%considered that they did not have proper information about chemotherapy. About 73% wanted to havetheir treatment related decision made by the treating physician. Conclusions: Patient related beliefs in mythsand concerns are unique in the socio-cultural set up of Pakistan. If physicians are better aware of these factors,they may be able to handle patient related issues in a more effective way.