Views Of Cancer Patients Research Articles

What is "Value"? Results of a Survey of Cancer Patients and Providers.

We measured the importance patients with gastrointestinal cancer and health care providers place on treatment outcomes, quality of life, and costs. This cross-sectional survey study was conducted between June 1, 2020 and November 30, 2020. We identified surviving patients who had been treated or were anticipating treatment for pancreatic or gastric cancer at our single institution from January 1, 2000 through January 31, 2020. Surveys assessed the importance patients and providers placed on outcomes, well-being, costs, and experiences. Surveys measured how these values had changed over time. We compared the importance patients and providers place on each of the attributes of value. A total of 383 patients and 164 providers responded. Providers felt experience, emotional well-being, and costs were more important than patients themselves did (all p < 0.05). Patients more commonly reported that survival had become more important to them over time, while providers believed that emotional well-being, experience, and costs had become more important to patients (all p < 0.05). Postoperative patients ranked functional well-being as more important than preoperative patients did (p = 0.031). Patients of lower income and education levels more reported concerns of costs over the course of their care (both p < 0.05). Younger age was associated with concern for direct (r = -0.167, p = 0.004) and indirect costs (r = -0.318, p < 0.001). Although there are consistencies amongst the views of cancer patients and providers, there remain discordances in the perception of value. Patients' values differed across their treatment and survivorship course. These data demonstrate the importance of accounting for multistakeholder perspectives in assessments of value in health care.

Cancer patients’ awareness about clinical research in the era of social media and “fake news”: Preliminary results from ELPIS Study.

e24121 Background: Barriers for low recruitment in clinical trials have been classified based on three main sources: physician, patient, system. A primary role is played by a low patient awareness, which often leads to a lack of confidence in science and a substantial inability to estimate the benefits deriving from trial participation, aggravated by the spread of fake news. A prospective observational study was conducted to investigate the views of cancer patients on aspects of clinical research, their expectations, the level of comprehensibility of informed consent and the impact of the fake news phenomenon. Methods: From January 2018, after Ethics Committees approval, the ELPIS study was initiated in 9 Italian Medical Oncology Units. After signing the informed consent, patients were asked to complete a questionnaire, consisting of a set of multiple choice and Likert-score questions. Results: As of January 2021, 115 patients were enrolled, with a balanced sex distribution and a prevalence of subjects older than 55-years (79.8%). Regarding the previous knowledge about clinical research, the average score was 3.9 (range 1-5). The vast majority of respondents (91.3%) had already started experimental therapy and many of them constantly used internet (65.2%) and social networks (34.8%). More than half (53.9%) stated the interview with the physician was sufficient for a full understanding of informed consent. In case of doubt, the majority seeked support in the clinician (39.1%) while very few (1.7%) relied on the web. The average score attributed to doctor-patient relationship was equal to 8.89 (range 1-10). Respondents were quite confident in their ability to independently search for information on their disease, discriminate fake news and identify reliable sites (average score 3.26, 3.27, 3.09 respectively, over a range of 1-5). The scores related to the presumed ability to understand the results of a clinical study and to actively collaborate to produce research were high (average score 4.72 and 4.39 over a range of 1-5). Conclusions: Preliminary data from our research show a good level of patient awareness and a fine ability to understand information, discerning real from fake news. Continuing and implementing the training initiatives of the population in the health sector will certainly contribute to further improvement, hopefully obtaining an even greater involvement of patients in the early phases of research.

Patient and carer experiences of nutrition in cancer care: a mixed-methods study.

Evidence-based guidelines exist to guide health professionals and services about cancer nutrition care; however, the views of cancer patients and carers are not well understood. This study aimed to understand the experience and needs of cancer patients and carers regarding nutrition care across the care continuum. Using a mixed-methods approach, cancer patients and carers completed a cross-sectional online survey and focus groups. Participants were recruited through health services and cancer organisation consumer networks via email distribution lists, e-newsletters, and social media. Focus groups were audio-recorded, transcribed, and analysed using content analysis. Of 165 survey respondents, only 51% (n=84) reported they talked to a health professional about their nutrition care at any time-point, and only 32% with a dietitian. The majority (84%) of patients and carers felt nutrition was important at one or more time-points in their cancer path, indicating during and after cancer treatment the most important. However, perceived support from health professionals for nutrition care was deemed low at all time-points. Five focus groups were held (n=20; 16 patients, 2 carers, 2 both patients/carers) and five themes emerged: nutrition information, experiences and need; control over diet and nutrition; importance and value of nutrition; access to support; what optimal nutrition care looks like. Patients and carers felt nutrition was important during their cancer path, but perceived support from health professionals for nutrition care was low. This study has highlighted patient and carer nutrition experiences that will inform development of a co-designed optimal cancer nutrition care pathway.

Views of cancer patients regarding cardiopulmonary resuscitation in Greece.

Cardiopulmonary resuscitation (CPR) in patients with cancer is an ethical issue of worldwide interest. A questionnaire-based study was carried out in a Greek oncology hospital aiming to explore the attitude of Greek cancer patients towards CPR. Overall, 200 patients (94 male, 106 female) of a mean age of 62.8years took part in the study. Only 42 (21%) patients indicated that they knew what CPR really involves and only 20 (10%) patients thought that CPR has serious side effects, while the mean estimated in-hospital CPR survival rate to hospital discharge was 56.6% (minimum=2%, maximum=99%, standard deviation [SD]=25.16) and 42.1% (minimum=0%, maximum=90%, SD=24.56%) in case of unselected and cancer patients respectively. Despite their poor knowledge, 177 (88.5%) patients were willing to undergo CPR in case of an in-hospital arrest, 127 (63.5%) thought that they had the right to choose their CPR status and 141 (70.5%) believed that they should be asked about it when they enter the hospital. Most patients (36%) wanted their CPR status to be decided by themselves, their family and their doctor jointly. These findings indicate that specific measures should be applied to clinical practice in order to best manage this ethical issue, and consequently, improve cancer care.

Advanced support for quality of life in oncology: Brazilian private and public health insurance cancer patients' point of view.

e18229 Background: Cancer patients suffer from burden symptoms and adverse events which compromise quality-of-life. Early palliative care involvement of metastatic non-small cell lung cancer patients has demonstrated increased overall survival. Advanced Support for Quality-of-Life in Oncology - ASQO - addresses cancer and its treatment complications aiming a safe cure or symptom control and dignified death. Measure cancer patients' background and interest about their disease is critical for planning care. To study the point of view of cancer patients about ASQO and compare private and public Brazilian health insurance cancer patients. Methods: An interview was performed and SPSS was used to find means and rates. The protocol was approved by Federal University of Pernambuco ethics committee and all patients signed informed consent Results: 48 patients were interviewed, 28 at Hospital das Clinicas Federal University of Pernambuco and 20 at ÓNKOS Oncology. Attached tables show demographic data and patients’ background, interest and opinion. The topics on which more and less patients’ background were “Chances of cure” (85%) and “Fertility” (25%); Fertility (59%) and participation in clinical research (40%) were the subjects for which more and less patients wanted additional information; Among those patients who wanted additional information about any topic, the theme on which more and less comments were made were “Pain” (100%) and individualization of treatment (10%); Goals of treatment (89%) and fertility (41%) were the subjects that more and less patients were satisfied with the information received Conclusions: In Brazil, the majority of cancer patients don’t have the opportunity to discuss treatment goals and fertility is not widely discussed with them. This translated into highest percentage of interest in the subject and a higher degree of dissatisfaction with the information received, despite median age of 58 years in the study population. The high prevalence of uncontrolled pain reflected in 100% of responders have made additional comments, indicating a need for health professionals education to adequately manage this symptom. Clinical trial information: CAAE 50921215.8.0000.5208.

Consent for Biobanking: Assessing the Understanding and Views of Cancer Patients

Cancer patients were questioned about the consent process in a context in which they were routinely requested to donate tumor samples to research. After in-depth interviews of 19 patients, a 12-page questionnaire was designed and mailed to 745 patients who had been recently treated for colorectal cancer, breast cancer, or a hematological malignancy at a French Regional Cancer Center at which an opt-in biobanking system has existed since 2002. The response rate was 77.0% (N = 574). Among responding patients, 349 (60.8%) of the 574 were in favor of a formal and signed consent. Concordance was low (kappa = 0.23) between the number of patients who declared in the survey that they had given consent (213 of 574 [37.1%]) vs the number for whom registered consent had been recorded (267 of 574 [46.5%]). Only 2 (0.3%) of the 574 patients stated that they had signed a refusal, and only 88 (41.3%) of the 213 patients who remembered giving consent understood that their consent for biobanking also covered authorization to use their clinical data. We conclude that the opt-in consent procedure is positively perceived by most patients but should be improved for a better understanding and possibly an even better adherence to the consent process.

The Views Of Cancer Patients On Receiving Bad News

AIM: This study was performed in a descriptive matter to determine the views of inpatients at an oncology state hospital on receiving bad news. METHOD: The study sample consisted of 237 inpatients (155 females, 82 males) at an oncology state hospital between October and November 2008 who were determined using the random sampling method and accepted participating in the study. The data collection tool used was a survey form that consisted of 24 questions related to the sociodemographic features and views on receiving bad news. RESULTS: The mean age of the study subjects was 53.1±13.9 (min.=18, max.=83). The patients were undergoing the treatment process in 84% and the diagnostic process in 16%. The bad news had been given by the physician in 87.8% and while in the physician\'s room in 74.8%. The patients had been told while receiving the bad news that \'there is a mass/problem/lesion/tumor and you will undergo surgery\' in 47.7% while 24.9% had been told that they had cancer directly. The patients stated that they froze, fainted, were shocked, felt their life was shattered and experienced emotions such as sadness, fear, hopelessness, sorrow, disappointment, desperation, etc. at a rate of 93.7%. We found that 58.2% of the patients had not been given an opportunity to express their emotions when they received the bad news, 67.4% preferred to have a relative with them at the time, 40.9% felt that the bad news should be given in a special environment, 30% wanted the bad news to be given as soon as the diagnosis was known while 36.7% preferred being told everything about the disease when receiving the bad news CONCLUSION: Taking into account the information content, family participation, and the individual preferences of the patients regarding time and place when giving bad news and encouraging them to ask questions and express themselves may make it easier for the patients to cope with bad news.

Speak for yourself

From her early days in cancer nursing, Kathy Redmond was determined to make life better for patients. Her efforts have helped ensure that the views of cancer patients are now higher up the European agenda.

Critically III Cancer Patients: Benefit and Expense

To the Editor. —The recent article by Schapira et al 1 reinforces the need to evaluate carefully the benefit of intensive care interventions in cancer patients. Unfortunately, this article, as subsequently presented in the media, tended to promote a view of cancer patients as poorer risks and thus bad investments for intensive medical care. However, the quoted mortality figures of 40% for patients with solid tumors and 50% for those with hematologic malignancies are similar to typical mortality rates for other intensive care unit (ICU) admissions, eg, septic shock (57%), gastrointestinal bleeding (37%), pneumonia with respiratory failure (40%), and acute renal failure requiring dialysis (57%). 2,3 The study also pointed to poor postdischarge survival; this is also common in patients with other chronic conditions who are discharged from the ICU. The same adverse cost benefit seen in this study would seem likely in all ICU patients. It would therefore have