患者及家属对于癌症诊断告知对象意愿调查

目的了解患者和家属对于癌症诊断告知对象的意愿。方法采用问卷调查法,调查在我院特需门诊就诊的患者175例,家属238例。调查问卷涉及患者和家属的一般资料和患者及家属对于癌症诊断告知的意愿。结果被调查175例患者中有74例（42.3%）希望一旦确诊患癌症即把诊断告知其本人,46例（26.3%）希望将诊断告知其家属,55例（31.4%）希望将诊断同时告知患者和家属。被调查的238例家属中只有5例（2.1%）希望将诊断告知患者本人,194例（81.5%）希望将诊断告知家属,39例（16.4%）希望将诊断同时告知患者和家属。结论我国的患者和家属对于癌症诊断告知对象存在着明显不同的意愿,患者的告知对象意愿受年龄因素影响比较明显。建议医生在告知癌症诊断时意识到这一现象,在告知过程中要尊重患者和家属的意愿,并采用必要的技巧和方式。     

Prognostic communication preferences of migrant patients and their relatives

Objectives: Migrant patients comprise a significant proportion of Western oncologists' clientele. Although previous research has found that barriers exist in the communication between ethnically diverse patients and health professionals, little is known about their personal preferences for communication and information, or the concordance of views held between patients and family members. Methods: Seventy‐three patients (31 Anglo‐Australians, and 20 Chinese, 11 Arabic and 11 Greek migrants) and 65 relatives (25 Anglo‐Australians, and 23 Chinese, 11 Arabic and 7 Greek migrants) were recruited through nine Sydney oncology clinics. Following prognostic consultations, participants were interviewed in their preferred language about their experiences and ideals regarding information and communication with oncologists. Interviews were audio‐taped, translated and transcribed, and then thematically analysed using N‐Vivo software. Results: Consistency was found in patient preferences, regardless of ethnicity, in that almost all patients preferred prognostic information to be delivered in a caring and personalised manner from an authoritative oncologist. Contrary to previous research, migrant patients often expressed a desire for prognostic disclosure. Discordance was found between migrant patients and their families. These families displayed traditional non‐Western preferences of non‐disclosure of prognosis and wanted to actively influence consultations by meeting with oncologists separately beforehand and directing the oncologists on what and how information should be conveyed to patients. Conclusions: Many of the communication issues facing patients in the metastatic cancer setting are shared amongst Anglo‐Australian and migrant patients alike. Understanding the dynamics within migrant families is also an important component in providing culturally sensitive communication. Future directions for research are provided. Copyright © 2011 John Wiley & Sons, Ltd.     

Truth-telling in Oncology: Egyptian Patients’ Attitudes and Preferences

Objective: Truth-telling in oncology is a major challenge, particularly in the absence of disclosure protocols in Egypt and the lack of Egyptian studies examining patients’ preferences regarding cancer disclosure. This study aimed to reveal the preferences of patients seeking care at the National Cancer Institute – Cairo University regarding disclosing cancer diagnosis and the type and amount of information to be told. Methods: This cross-sectional study was conducted on 200 patients selected consecutively from those attending the outpatient clinics of the National Cancer Institute – Cairo University. Face-to-face interviews were performed with the patients according to a structured questionnaire. The questionnaire consisted of five parts: socio-demographic characteristics, knowledge about cancer disease, attitudes towards cancer disease, experience during the disclosure of the diagnosis, and preferences regarding disclosure of cancer diagnosis. Results: Most patients (89.5%) preferred to know the diagnosis. Of them, 94.4% wished to know from the physician. No agreement was found between most patients’ preferences and physicians’ practice. On multivariate logistic regression analysis, patients’ education was the only significant predictor of the preference to know the diagnosis (OR = 5.298, 95% CI = 1.258 - 22.301, P = 0.023). Conclusion: Patients have a great desire to know the diagnosis and other information related to treatment and prognosis.     

Congruence of knowledge, experiences, and preferences for disclosure of diagnosis and prognosis between terminally-ill cancer patients and their family caregivers in Taiwan

Background. Over the last 40 years, studies have shown cultural differences in attitudes toward truth telling at the end-of-life. Nevertheless, the argument that cancer patients from an Asian culture have different preferences about information disclosure that necessitate significantly modifying information disclosure practices has not been validated by direct investigation from patients' points of view. Methods. Six hundred seventeen dyads of patient-designated family caregivers across 21 hospitals throughout Taiwan were surveyed and interviewed by a semistructured interview guide. Percentage of agreement, kappa coefficients, McNemar tests, and paired t-tests were conducted to examine the extent of congruence of knowledge, experiences, and preferences for disclosure of diagnosis and prognosis between the dyads. Results. There were substantial discrepancies in the knowledge and experiences of being informed about the diagnosis and prognosis between Taiwanese terminally-ill cancer patients and their family caregivers (kappa values ranged from 0.08 to 0.44). Cancer patients strongly proclaimed their superior rights to be informed about their disease over their family and preferred their physicians to inform themselves before releasing any information to their family caregivers. Conclusion. The arguments that cancer patients from an Asian culture (i.e., Chinese/Taiwanese culture) have different preferences regarding being informed of their diagnosis and prognosis and that family members have legitimate superior power in decision making could not be supported by data from this group of terminally-ill cancer patients. Physicians need to respect patients' preferences rather than routinely taking the family's opinions into consideration first in the event of disagreement. Equipped with adequate information, terminally-ill cancer patients from Asia may have better opportunities to make end-of-life care decisions that are in accord with their wishes.     

The attitudes of cancer patients and their families toward the disclosure of terminal illness.

PURPOSE:To ascertain the attitude of cancer patients and their families toward disclosure of terminal illness to the patient. PATIENTS AND METHODS: We constructed a questionnaire that included demographic and clinical information and delivered it to 758 consecutive individuals (433 cancer patients and 325 families that have a relative with cancer) at seven university hospitals and one national cancer center in Korea. RESULTS: 380 cancer patients and one member from each of 281 families that have a relative with cancer completed the questionnaire. Cancer patients were more likely than family members to believe that patients should be informed of the terminal illness (96.1% v 76.9%; P <.001). Fifty percent of the family members and 78.3% of the patients thought that the doctor in charge should be the one who informs the patient. Additionally, 71.7% of the patients and 43.6% of the family members thought that patients should be informed immediately after the diagnosis. Stepwise multiple logistic regression indicated that the patient group was more likely than the family group to want the patient to be informed of the terminal illness (odds ratio [OR], 9.76; 95% CI, 4.31 to 22.14), by the doctor (OR, 4.00; 95% CI, 2.61 to 6.11), and immediately after the diagnosis (OR, 3.64; 95% CI, 2.45 to 5.41). CONCLUSION: Our findings indicated that most cancer patients want to be informed if their illness is terminal, and physicians should realize that the patient and the family unit may differ in their attitude toward such a disclosure. Our results also reflect the importance of how information is given to the patient.     

Revealing a cancer diagnosis to patients: attitudes of patients,families, friends,nurses, and physicians in Lebanon—results of a cross-sectional study

Background

Disclosure of a cancer diagnosis to patients is a major problem for physicians in Lebanon. Our survey aimed to identify the attitudes of patients, families and friends, nurses, and physicians regarding disclosure of a cancer diagnosis.

Methods

Study participants included 343 physicians, nurses, cancer patients, families, and friends from clinics in two major hospitals in Lebanon. All completed a 29-item questionnaire that assessed, by demographic group, the information provided about cancer, opinions about the disclosure of the diagnosis to cancer patients, perceived consequences to patients, and the roles of family, friends, and religion.

Results

Overall, 7.8% of the patients were convinced that cancer is incurable. Nearly 82% preferred to be informed about their diagnosis. Similarly, 83% of physicians were in favour of disclosing a cancer diagnosis to their patients. However, only 14% of the physicians said that they revealed the truth to the patients themselves, with only 9% doing so immediately after confirmation of the diagnosis. Disclosure of a cancer diagnosis was preferred before the start of the treatment by 59% of the patients and immediately after confirmation of the diagnosis by 72% of the physicians. Overall, 86% of physicians, 51% of nurses, and 69% of patients and their families believed that religion helped with the acceptance of a cancer diagnosis. A role for family in accepting the diagnosis was reported by 74% of the patients, 56% of the nurses, and 88% of the physicians. All participants considered that fear was the most difficult feeling (63%) experienced by cancer patients, followed by pain (29%), pity (8%), and death (1%), with no statistically significant difference between the answers given by the participant groups.

Conclusions

The social background in Lebanese society is the main obstacle to revealing the truth to cancer patients. Lebanese patients seem to prefer direct communication of the truth, but families take the opposite approach. Physicians also prefer to communicate the reality of the disease at the time of diagnosis, but in actuality, they instead disclose it progressively during treatment. Faith is helpful for acceptance of the diagnosis, and families play a key role in the support of the patients. An open discussion involving all members of society is necessary to attain a better understanding of this issue and to promote timely disclosure of a cancer diagnosis.     

Physician,patient and family attitudes regarding information on prognosis: a Brazilian survey

BackgroundCommunication between physicians and patients is a fundamental aspect of cancer care, yet most physicians’ perceptions are often inconsistent with the patients’ stated preferences while prognostic information is the most misunderstood.Patients and methodsMembers of the Brazilian Society of Oncology Physicians (n = 609) were identified and asked to complete a mailed questionnaire. Outpatients (n = 150) and their family members (n = 150), oncologists and fellows (n = 55) from a public healthcare hospital and a tertiary cancer hospital in Sao Paulo were also personally invited to participate.ResultsA total of 202 physicians, 150 outpatients and 150 family members were participated. The majority of patients (92%) believe they should know about their terminal stage compared with 79.2% of physicians and 74.7% of families (P = 0.0003). Cancer patients were most likely to support disclosure of diagnosis and terminality (P = 0.001), to consider that this disclosure was not stressful (P < 0.0001) and that this knowledge would improve their quality of life (P < 0.0001).ConclusionsCancer patients seen in these centers in Southeastern Brazil prefer to know the truth about their poor prognosis more than their physicians and families think. Further studies with larger samples of patients and physicians are necessary to show if our results are representative of all Brazilian situations.     

Prostate cancer support and advocacy groups: their role for patients and family members

Patients and their families are profoundly affected by the diagnosis of prostate cancer. Competing treatment options and uncertainty regarding the expected course of their disease may provoke strong emotional reactions including depressive symptoms and feelings of overwhelming anxiety. Despite potentially significant implications regarding quality-of-life (QOL) issues associated with various forms of treatment, few studies have focused specifically on the psychologic reactions among men with the disease or their family members. In response to this critical lack of psychosocial information and care, many affected individuals turn to prostate cancer support or advocacy groups for their educational needs, coping strategies, assistance with concerns about medical decisions, and peer networking. This article summarizes the psychologic impact of a prostate cancer diagnosis on patients, spouses, and family members and reviews pertinent advocacy and support information available to men affected by this disease and the physicians who care for them.     

An exploration of the experience of cancer cachexia: what patients and their families want from healthcare professionals

REID J., Mc KENNA H.P., FITZSIMONS D. & Mc CANCE T.V. (2010) European Journal of Cancer Care 19 , 682–689 An exploration of the experience of cancer cachexia: what patients and their families want from healthcare professionals The aim of this paper is to investigate the perceptions of patients and family members with regard to care received for cancer cachexia. A qualitative study recruited 27 participants, of which 15 were patients with advanced cancer who had primary cachexia and 12 were family members. Participants were recruited from a regional cancer centre in the UK. All participants took part in a domiciliary interview, which was transcribed verbatim for analysis. A major finding from analysis was ‘lack of response from health care professionals’ in relation to cancer cachexia management. This finding illuminated that patients and their family members wanted three things from healthcare professionals. They wanted their profound weight loss acknowledged, they wanted information about it and why it was happening and they wanted interventions to deal with it. This paper provides powerful messages for healthcare professionals and highlights the needs of patients and their family regarding cancer cachexia management. Patients and their families want this problem addressed by healthcare professionals. This client group requires supportive healthcare interventions, so that they can understand the nature and impact of this syndrome.     

Oncology Nurses' Obstacles and Supportive Behaviors in End-of-Life Care: Providing Vital Family Care

Purpose/Objectives: To determine the impact of obstacles and supportive behaviors in end-of-life (EOL) care as perceived by hospital-based oncology nurses.Design: A 69-item mailed survey.Setting: National random sample.Sample: 1,005 nurse members of the Oncology Nursing Society who had provided EOL care for patients with cancer.Methods: Three mailings yielded 380 usable responses from 912 eligible respondents, resulting in a 42% return rate.Main Research Variables: Size and frequency of EOL care obstacles and supportive behaviors for patients with cancer in a hospital setting.Findings: Results of this research demonstrate the need for more EOL education and help in forming teams of nurses, social and palliative care workers, and physicians to support high-quality care. Another finding was the need for other nurses at a facility to give the nurse caring for the dying patient more time to support the patient and family.Conclusions: Dealing with the family is vital in providing optimal EOL care to patients dying from cancer. By carefully listening to the experience, concerns, and recommendations of hospital-based oncology nurses, compassionate EOL care can be provided to these patients and their families.Implications for Nursing: Oncology nurses are dedicated to providing the best EOL care to their patients and patients' families. This study helped to identify research-based obstacles and supportive behaviors regarding the provision of high-quality EOL care.     

"They paid no mind to my state of mind": African American breast cancer patients' experiences of cancer care delivery

This qualitative study describes experiences of cancer care delivery for nine African-American breast cancer patients. Three focus groups captured participants' experiences with the diagnosis and treatment of breast cancer and parenting their children. Spontaneous accounts describing their interactions with oncology staff were reported by all breast cancer patients. Content analysis revealed five themes: interaction with physicians, power and authority of physicians, collaboration between physicians and mental health professionals, navigating the system, and involvement of the family in the treatment process. These themes may help in developing culturally sensitive training programs for oncology providers to improve the quality of cancer care.     

Communicating cancer diagnosis and prognosis: when the target is the elderly patient-a GIOGer study

BackgroundEffective communication to cancer patients allows better emotional response to diagnosis, coping with health professionals and compliance to treatment. We lack specific studies on patterns of clinical communication in elderly patients, their involvement in decision making and the role of their families.Patients and methodsStructured interviews to collect information on diagnosis and prognosis disclosure, satisfaction with information, compliance to disease experience and willingness toward receiving more information and coping, were administered to patients age 65 years and older and receiving chemotherapy.ResultsSix hundred and twenty two patients completed the interviews and were evaluated. Four hundred and twelve (66.2%) were informed, 210 (33.8%) were not informed.Information was associated with age, degree of education, geographical area, ECOG-PS, tumour site and family composition and the patient’s perception of being supported in the disease experience.The majority of the patients consider their families as the main source of support in the disease experience (86.5%), wish to have a family member participating in oncology consultation (79.1%) and consider the information received complete and understandable or clear and reassuring (80%). Receiving adequate information facilitates a better patient–health professional relationship for 84.8% of the patients. 63% of the patients dealt positively with cancer and 62.2% showed positive expectations for the future. Informed patients refer better expectation than those not informed.ConclusionOur study underlines the importance of clinical information for older cancer patients and the need to involve family members in the processes of diagnosis and prognosis disclosure and decision making.Health professionals must consider specific age-related issues including social, cultural and emotional aspects and understand the role that the family members play in the disease experience of elderly patients.Competent caring for elderly cancer patients must provide adequate information and emotional support not only to the patients but also to their family to assure appropriateness of care.     

The role of patients’ families in treatment decision‐making among adult cancer patients in the Sultanate of Oman

There are limited numbers of studies available in Middle Eastern Arabic countries regarding participation of family ?members in cancer treatment decision‐making (TDM). The aim of this study was to evaluate the role of family members’ ?in TDM among ?adult Omani cancer ?patients. A cross‐sectional study was conducted in two main teaching hospitals. All adult Omani patients who were diagnosed with cancer and their nominated family members were invited to ?participate. A tool developed by Cancer Care Outcomes Research and ?Surveillance Consortium was used to identify the level of family involvement in TDM. A weighted kappa (k) was significant (p < .001) and showed almost full agreement between the patients’ experiences and their preferences ?(?k = .98) and between family members’ experiences and their preferences ?(?k = .96) ??of family involvement in TDM. Binary logistic regression showed significant family‐controlled TDM if the patient communicated? less with oncologists (OR = 9.89; 95% CI: 3.79–25.81); financial dependence of the patient on their families ?(OR = 6.21; 95% CI: 2.19–17.10?); and advanced stages of cancer at the time of diagnosis ?(OR = 3.10; 95% CI: 1.37–7.03). Oncologists in Oman should be aware of the strong family involvement in TDM to allow a successful cancer treatment.     

Palliative radiotherapy knowledge among community family physicians and nurses

Background. Primary care physicians and nurses care for patients with advanced cancer and need to be aware of the role for palliative radiotherapy (PR). Methods. We surveyed 250 family physicians, family medicine residents, and nurses attending oncology educational symposia to determine their knowledge of PR. Results. The survey response rate was 59%, and most respondents (77%) were involved with the care of cancer patients. Many (58%) thought that their knowledge of PR was insufficient for their needs. Although bone metastasis and spinal cord compression were frequently recognized indications for PR, only 50% of other assessed indications for PR were correctly identified. Almost all respondents stated that they wanted to learn more about PR. Conclusions. More education regarding PR is required for primary care physicians and nurses caring for cancer patients.     

“They Paid No Mind to My State of Mind”: African American Breast Cancer Patients’ Experiences of Cancer Care Delivery

This qualitative study describes experiences of cancer care delivery for nine African-American breast cancer patients. Three focus groups captured participants’ experiences with the diagnosis and treatment of breast cancer and parenting their children. Spontaneous accounts describing their interactions with oncology staff were reported by all breast cancer patients. Content analysis revealed five themes: interaction with physicians, power and authority of physicians, collaboration between physicians and mental health professionals, navigating the system, and involvement of the family in the treatment process. These themes may help in developing culturally sensitive training programs for oncology providers to improve the quality of cancer care.     

Discrepancies among patients, family members, and physicians in Korea in terms of values regarding the withholding of treatment from patients with terminal malignancies

BACKGROUND: The role of the physician in end-of-life decision-making is complicated. To analyze the controversies that surround therapeutic decision-making and the withholding of life-sustaining treatments, the authors compared values regarding therapeutic intervention that were held by physicians and family members of patients with terminal malignancies. METHODS: One hundred fourteen patients with either advanced-stage or terminal disease were enrolled in the current study. Questionnaires were administered to the duty physician and to patients' family members. The questions covered issues such as the use of new anticancer agents with only partial efficacy (15%) and the use of opioid analgesics, intravenous nutrition, feeding tubes, antibiotics, and hemodialysis. In addition, participants were asked about the administration of cardiopulmonary resuscitation (CPR) and the use of ventilators, and when the patient's family consented, the same questionnaire was administered to the patient as well. RESULTS: Seventeen of 114 families refused to answer the questionnaire. Of the 97 available families, only 14 permitted access to the patient. Of those 14 patients, 5 refused to complete the questionnaire. Overall, 100% of families and 87% of patients had some knowledge regarding malignant disease, but only 69% of families and 37% of patients clearly understood the stage of the patient's disease. The use of a new agent with only partial efficacy (approximately 15%) was accepted by 41% of physicians and by 60% of families. The concordance rate between patients' physicians and family members regarding the same patient was 42%. The rankings of the acceptance of treatment by physicians were as follows: opioid analgesics, 100%; antibiotics, 91%; feeding tube, 87%; and intravenous nutrition, 78%. The rankings of the same items by family members were as follows: opioid analgesics, 92%; antibiotics, 89%; intravenous nutrition, 86%; and feeding tube, 75%. The concordance rates between patients' physicians and families were lowest for ventilator application (39%) and CPR (47%). CONCLUSIONS: Values held on issues such as therapeutic decision-making and the withholding of life-sustaining treatment for patients with terminal malignancies were discordant between physicians and family members. To resolve controversies regarding the role of the physician in end-of-life decision-making, the values of physicians, patients, and family members should be considered in the final decision-making process.     

Different attitudes of Chinese patients and their families toward truth telling of different stages of cancer

OBJECTIVE: Cancer patients and their families differed in their attitude toward truth telling. The objective is to investigate different attitudes of Chinese patients or families toward whether and how to disclose diagnosis to patients with different stages of cancer and to examine the difference between the two groups. METHODS: A questionnaire was delivered to 1023 participants. RESULTS: Three hundred and eighty-two patients and 482 families completed the questionnaire. Cancer patients were more likely than families to believe that patient should be informed of the diagnosis (early-stage, 90.8 vs 69.9%, P<0.001; terminal stage, 60.5 vs 34.4%, P<0.001), and that doctor-in-charge was the appropriate person to disclose the diagnosis. Most participants thought that patient should be disclosed immediately after the diagnosis. Nearly half of participants reported that patient should be disclosed in a quiet and undisturbed room. When the hypothetic diagnosis changed from early-stage cancer to terminal illness, the number of participants, who wanted patient to know the diagnosis, decreased significantly. CONCLUSION: Our findings indicated that Chinese cancer patients and their families differed in their attitude toward truth telling and the attitudes toward such a disclosure were influenced by disease stage. Physicians should realize this phenomenon and pay more attention to the skills of how to disclose the cancer diagnosis.     

Hereditary nonpolyposis colorectal carcinoma (HNPCC) and HNPCC-like families: Problems in diagnosis, surveillance, and management

BACKGROUND: To the authors' knowledge, hereditary nonpolyposis colorectal carcinoma (HNPCC) is the most commonly occurring hereditary disorder that predisposes to colorectal carcinoma (CRC), accounting for approximately 2-7% of all CRC cases diagnosed in the U.S each year. Its diagnosis is wholly dependent on a meticulously obtained family history of cancer of all anatomic sites, with particular attention to the pattern of cancer distribution within the family. METHODS: The objective of the current study was to illustrate various vexing problems that can deter the diagnosis of HNPCC and, ultimately, its management. This was an observational cohort study. Sixteen HNPCC and HNPCC-like families were selected from a large resource of highly extended HNPCC families. High-risk patients were selected from these HNPCC families. An ascertainment bias was imposed by the lack of a population-based data set. Personal interviews and questionnaires were used for data collection. RESULTS: There was an array of difficulties highlighted by limitations in compliance, lack of a clinical or molecular basis for an HNPCC diagnosis, ambiguous DNA findings, problems in genetic counseling, failure to meet Amsterdam or Bethesda criteria, small families, lack of medical and pathologic documentation, poor cooperation of family members and/or their physicians, cultural barriers, economic stress, frequent patient fear and anxiety, perception of insurance discrimination, and limited patient and/or physician knowledge regarding hereditary cancer. CONCLUSIONS: The diagnosis and management of HNPCC is predicated on physician knowledge of its phenotypic and genotypic heterogeneity, in concert with the multifaceted problems that impact on patient compliance.     

Increased cancer risk for individuals with a family history of prostate cancer,colorectal cancer,and melanoma and their associated screening recommendations and practices

Prostate cancer, colorectal cancer, and melanoma are three malignancies that appear to have strong genetic components that can confer additional risk to family members. Screening tools, albeit controversial, are widely available to potentially aide in early diagnosis. Family members are now more attuned to the risks and benefits of cancer screening, thus, it is imperative that physicians understand the screening tools and how to interpret the information they provide. We reviewed the current literature regarding the cancer risks for individuals with a family history of prostate cancer, colon cancer, and melanoma, the current screening recommendations for family members, and actual screening practices of individuals with a family history of these malignancies. This review should serve as a guide for physicians and cancer control planners when advising their patients and the public regarding screening decisions.