Comorbidity measurements have recently been used to improve estimation of tolerance to allogeneic hematopoietic cell transplantation (HCT). We sought to determine the independent effect of comorbidity and performance status on HCT outcome and to devise a simple risk classification system for transplant-related mortality. We analyzed 105 consecutively enrolled patients who underwent HCT and received reduced intensity conditioning with fludarabine, melphalan, and alemtuzumab. Comorbid conditions were tabulated using 2 scales, the Charlson Comorbidity Index (CCI) and the Kaplan-Feinstein Scale (KFS). Comorbid conditions were found in 47% of patients by the KFS and in 27% by the CCI (P < .001). Using the Eastern Cooperative Oncology Group Performance Status (PS) scale, 34% had a PS score >0 (range, 0-2). A simple scale combining the KFS and PS enabled separation of high- from low-risk patients, with 6-month cumulative incidences 50% and 15%, respectively for transplant-related mortality (P = .001) and enhanced prognostic power over the CCI alone (P = .018). Prospective studies evaluating more comprehensive functional and comorbidity measurements are warranted.
The disclosure of prognosis to terminally ill patients has emerged as a recent concern given greater demands for patient involvement in medical decision-making in the United States. As part of the informed consent process, American physicians are legally and ethically obligated to provide information to such patients about the risks, benefits, and alternatives of all available treatment options including the use of experimental therapies. Although not legally required, the disclosure of a terminal prognosis is ethically justified because it upholds the principle of self-determination and enables patients to make treatment decisions consistent with their life goals. To understand oncologists' attitudes about disclosing prognostic information to cancer patients with advanced disease, we interviewed fourteen oncologists and conducted one focus group of medical fellows. Although oncologists reported to disclose prognosis in terms of cancer not being curable, they tend to avoid using percentages to convey prognosis. Oncologists' reported reluctance to disclosing prognosis was conveyed through the use of metaphors depicting the perceived violent impact of such information on patients. Oncologists' reluctance to disclose prognosis and preserve patient hope are held in check by their need to ensure that patients have 'realistic expectations' about therapy. We discuss these data in light of the cultural, ethical, and legal dimensions of prognosis disclosure, patient hope and the doctor-patient relationship, and recommend ways to enhance the communication process.
Purpose Little is known about how physicians discuss prognosis with terminally ill cancer patients. Thus, we sought to obtain cancer physicians’ self-reports of their prognosis communication practices. Methods A survey seeking self-reports regarding prognosis communication with their terminally ill cancer patients was mailed to a systematic sample of medical oncologists in the United States. Results Of 1,137 physicians, 729 completed and returned surveys (64% response rate). Median age of respondents was 51 years (range, 33 to 80 years); 82% were men. Respondents had practiced cancer care for a median of 18 years (range, 1.5 to 50 years) and reported seeing a median of 60 patients per week (range, 0 to 250 patients per week). Although 98% said their usual practice is to tell terminally ill patients that they will die, 48% specifically described communicating terminal prognoses to patients only when specific preferences for prognosis information were expressed. Forty-three percent said they always or usually communicate a medical estimate of time as to when death is likely to occur, and 57% reported sometimes, rarely, or never giving a time frame. Seventy-three percent said prognosis communication education was either absent or inadequate during their training, and 96% believed it should be part of cancer care training. Conclusion Medical oncologists report routinely informing their terminally ill patients that they will die. However, they are divided in describing themselves as either always discussing a terminal prognosis or doing so if it is consistent with their patients’ preferences for prognostic information. Most medical oncologists say they do not routinely communicate an estimated survival time to their patients.
8516 Background: Timely and accurate prognostic information is essential if patients are to make ethically appropriate medical decisions. Yet, prior research indicates advanced cancer patients (acp) with limited prognoses either misunderstand or fail to receive physician (md)-disclosed information regarding prognoses. Methods: Using semi-structured quantitative and qualitative interviews, acp were queried about prior discussions of prognosis (dop) with md and perceptions about treatment benefit. Results: To date, 87 (93%) acp receiving experimental (phase I) chemotherapy have been interviewed: median age 61 (33–82); 52% male; 80% Ca; 90% married; 58% >high school education. Quantitative interview data include: Likert scores (1–10) of likelihood of chemotherapy in: “stabilizing” cancer (mean 7.6); “halting” cancer (mean 7.1); producing “remission” (mean 6.9); and “curing” (mean 2.9). In response to a specific query, only 52% reported having dop with their md regarding life expectancy and 42% actually stated they initiated this dop. Although 45% denied any dop with md, a significant number of this group provided subsequent qualitative descriptions of dop within our interviews. As well, 61% described receiving specific quantitative estimates indicating a priori dop. When asked about their own thoughts on prognosis, only 4% described quantitative estimates or timeframes. Overwhelmingly so, patients were hopeful for a positive outcome or prolonged survival due to phase I trial participation. Several were currently deferring further dop. Conclusions: Despite prior data indicating that acp have a poor understanding of their prognoses, our findings indicate that at least 75% of interviewed acp recalled having had at least one specific dop and two-thirds describe having received a quantitative estimate of their prognosis. The majority of acp in phase I trials continue to have significant beliefs in the benefits of further therapy. No significant financial relationships to disclose.
9632 Background: Care team- patient communication regarding costs has been suggested as a means of minimizing patients' financial burden (FB) in oncology. However, it is unknown how cost communication preferences are related to FB or HRQoL. Methods: Patients with advanced cancers who had completed at least 3 months of chemotherapy were asked whether they agreed or disagreed with the following communication preference items: (1) willingness to discuss costs; (2) willingness to know the costs before treatment; (3) willingness to allow costs to be incorporated into shared-decision making (SDM); (4) wishing costs had been discussed in the past; (5) and whether costs were actually discussed. FB was assessed by the COST (COmprehensive Score for financial Toxicity), as well as by the EORTC financial impact (FI). Demographics, resource utilization, and HRQoL, measured by the FACT-G and EORTC QLQ-C30, were collected. Linear regression and chi-square tests were performed. Results: 233 patients were assessed. Most of the patients (n = 190, 82%) had never discussed costs with their care team. There was no association between preferences and HRQoL. Patients with FB by either instrument were more likely to report item (4) (COST, p < .01; FI, p < .001). Out of the 43 (18%) patients who agreed with this item, 34 (79%) had FB by COST, and 37 (86%) by the FI. There was no significant association between items (1), (2), (3), (5) and FB. Factors associated with communication preferences included age (item 4), race (2 and 4), employment (4), income (4) and education (1), as listed in the table below. Conclusions: HRQoL is not significantly associated with cost communication preferences. An opportunity for intervention was identified, as most of the patients who wished to have discussed costs in the past were now experiencing FB. The knowledge of these preferences may indicate the best timing and population with whom costs should be discussed. Willingness to: A% D% U% Age Race Employment Income Education (1) to discuss 45 29 26 NS NS NS NS * (2) to know 68 15 17 NS * NS NS NS (3) to use in SDM 41 37 22 NS NS NS NS NS (4) Wished had discussed 18 54 27 * * ** ** NS (5) Costs discussed 18 82 0 NS NS NS NS NS A%, agree; D%, disagree; U%, unsure; NS, not significant; * p < .05; ** p < .005
Background. In China and Taiwan, Complementary and Alternative Medicine (CAM) therapies such as traditional Chinese medicine have been an option to cancer patients for centuries, whereas in the United States, CAM has been growing in popularity only in the past few decades. Prior research has indicated that the prevalence of CAM use among cancer patients may exceed 80%. Because of a long cultural history of CAM, we hypothesized that oncologists in China and Taiwan (C/T) would communicate and combine CAM with conventional treatments more often than US oncologists. Methods. In 2004-2005, a convenience sample of oncologists from the United States, mainland China, and Taiwan were surveyed regarding their opinions and self-reported practice patterns regarding CAM. Results. A total 95 oncologists returned surveys, providing a 38% response rate. Four out of 5 respondents (78%) felt their medical training was inadequate to use CAM. However, 70% reported they would allow CAM use during active cancer treatment, even in the setting of curable disease. Responding C/T oncologists tended to ask patients more frequently (they ask > 25% of patients) about CAM use and recommended CAM more commonly (recommend to > 10%) to patients than surveyed US oncologists, 55% versus 37% ( P = .09) and 81% versus 53% ( P < .05). Respondents from the United States felt no more prepared for CAM use than C/T respondents, but 70% reported willingness to combine CAM with conventional treatments for curable disease as compared with only 48% ( P < .05) of C/T oncologists. Conclusions. As expected, responding C/T oncologists communicate more often about CAM with patients by asking and recommending CAM. However, contrary to our original hypothesis, C/T oncologists reported a much lower rate of combining CAM with conventional treatment among curable patients than responding US oncologists. Further research is needed to explore, in depth, the reasons for differences in CAM practice patterns among oncologists.
e19522 Background: Japanese physicians’ attitudes regarding the health care needs of childhood cancer survivors (CCSs) are not well described. Thus we examined the self-reported preferences and knowledge of pediatric oncologists and surgeons concerning this population. Methods: A mailed survey was sent to 858 physician members of the Japanese Society of Pediatric Oncology in October 2010 according to the methods of Henderson et al (JCO 28 (5):878, 2010). Results: A total of 405 surveys were returned (47% response rate); of which 300/533 pediatric oncologists and 105/325 and surgeons responded, respectively. Respondents’ median age was 46 and 48 years, respectively; 79% and 84% men. There were no differences between physicians excluding living area distributions and educational opportunities of late effects. Less than one third of respondents (31%) report referring survivors to other physicians. When comfort levels in caring for CCSs were described (1 = very uncomfortable; 7 = very comfortable), physicians were most comfortable with CCS <= 21years (4.4 ± 1.3 and 3.8±1.4), less comfortable with CCSs > 21 years but < 30 years old (3.6 ± 1.4 and 3.6 ± 1.4), and least comfortable with CCS >30 years (2.8 ± 1.5 and 3.3 ± 1.6). Familiarity with long-term follow-up guidelines was quite lower in surgeons (2.8 ± 1.4 vs 1.5 ± 1.4). In response to a clinical vignette of a 25 year old woman treated at 1 year with prophylactic cranial radiation (24 Gy), 62 % of pediatric oncologists and 43% of surgeons answered 3 or more questions regarding follow-up frequency, Hepatitis C surveillance, and late effects of cranial radiation in concordance with Japanese recommendations. Logistic regression analysis limited to pediatric oncologists showed learning experience (OR= 1.75; 95% CI, 1.05 to 2.93); practicing in a children’s hospital (OR 5.11; 95% CI, 1.15 to 22.8); and practicing in a general hospital (OR, 0.55; 95% CI, 0.32 to 0.95) were associated with answering three or more questions correctly. Conclusions: Preferences and knowledge with regard to long-term follow-up care of CCSs differ between pediatric oncologists and surgeons in Japan; pediatric oncologists appear to be more comfortable.
6011 Background: Phase II trials determine disease-specific activity of new agents. Standard phase II designs enroll initial cohorts, and the trial is terminated if all subjects are non-responders (NR). Due to ethical and scientific concerns, it is difficult to know if available NR information should be part of subject IC. Thus, we sought pts' understanding of the design and goals of phase II trials, experiences with IC, and interest in NR information. Methods: We conducted semi-structured interviews of cancer pts who recently enrolled in phase II trials at our institution. Results: Fifty-two of 54 consecutive pts agreed to be interviewed: 73% male, median age 58 (35–83), 77% white, 56% with some college. Patients reported physician phase II goals as: therapeutic benefit short of cure (60%), scientific (25%), cure/remission (20%). Patients own goals were prolongation of life (38%), therapeutic benefit short of cure (37%), cure/remission (23%). With regard to IC, 85% said they were told that advancement of scientific knowledge was an aspect of the trial, 79% said they were told they could stop treatment at any time, and 96% said they were informed of possible side effects; 73% said they were well informed of other options. However, only 50% of these pts reported they were offered non-experimental therapy, 32% no chemotherapy, and 12% palliative therapy. When asked about their understanding of the principal purpose of a phase II trial, 48% responded that it was therapeutic benefit short of cure, 40% advancement of scientific knowledge, 24% disease cure. Patients were also asked to define a threshold number (T) of NR they would be willing to accept before refusing enrollment. A majority (72%) was able to define a T: median 6.5 (1–99); and of these, 72% responded with a T that was <14 (cohort size required to detect a 20% RR). Seventy-four percent said they would want NR information before consenting to treatment; and 83% of these thought this information should be in the written consent form. Conclusions: Our data suggest that pts may not be adequately informed of alternatives to phase II trials and that disclosure of prior NR information is important to pts and may impact enrollment decisions. No significant financial relationships to disclose.
