On the receiving end: have patient perceptions of the side-effects of cancer chemotherapy changed since the twentieth century?

BACKGROUND: Studies in 1983 and 1993 identified and ranked symptoms experienced by cancer patients receiving chemotherapy. We repeated the studies to obtain updated information on patient perceptions of chemotherapy-associated symptoms. PATIENTS AND METHODS: A cross-sectional interview and patient-reported outcome questionnaires were administered to out-patients receiving chemotherapy. Patients selected from 124 cards to identify and rank the severity of physical and non-physical symptoms they had experienced and attributed to chemotherapy (primary endpoint). The patient's medical oncologist and primary chemotherapy nurse were invited to rank the five symptoms they believed the patient would rank as their most severe. We analysed the association of symptoms and their severity with patient demographics, chemotherapy regimen, and patient-reported outcomes. Results were compared to the earlier studies. RESULTS: Overall, 302 patients completed the interview: median age 58 years (range 17-85); 56% female; main tumour types colorectal 81 (27%), breast 67 (22%), lung 49 (16%); 45% treated with curative intent. Most common symptoms (reported by >50%) were: alopecia, general weakness, effects on family/partner, loss of taste, nausea, fatigue, difficulty sleeping, effects on work/home duties, and having to put life on hold. The most severe symptoms (ranked by >15% in top five) were: concern about effects on family/partner, nausea, fear of the future, fatigue, not knowing what will happen, putting my life on hold, and general weakness. Perceptions of doctors and nurses of patients' symptom severity closely matched patients' rankings. CONCLUSIONS: Compared to earlier studies, there was an increase in non-physical concerns such as effects on family and future, and a decrease in physical symptoms, particularly vomiting, but nausea, fatigue and general weakness remained bothersome. HIGHLIGHTS: • Symptoms related to chemotherapy have changed over time, likely due to less toxic regimens and improvements in supportive care. • Effects on family/partner, fear of the future, not knowing what will happen, and "life on hold" were major issues for patients. • Vomiting has decreased but nausea, fatigue and general weakness remain common symptoms for chemotherapy patients.

Physician endorsement alone may not enhance question-asking by advanced cancer patients during consultations about palliative care.

PURPOSE: This study aimed to explore the effect of physician endorsement of question-asking on advanced cancer patients' question-asking behaviour during consultations about palliative care and to explore other potential predictors of patient question-asking. METHODS: Data were obtained from 80 control group patients from a randomised controlled trial of standard palliative care (PC) consultation (control group) versus provision of a question prompt list (QPL) before the consultation. Consecutive eligible patients with advanced cancer referred to 15 PC physicians from nine Australian PC centres participated. Baseline measures were obtained from patients; consultations were audiotaped, transcribed and analysed by blinded coders; and physicians estimated the patients' survival. RESULTS: Endorsement of question-asking by the physician was not related to the number of patient questions. Patients with the highest anxiety levels asked 3.5 times as many questions as those with least anxiety (incidence rate ratio (IRR) = 3.54, 95% confidence interval (CI) 1.90-6.59, P = 0.001). After allowing for the effect of anxiety, patients with an estimated survival of >12 weeks asked 76% more questions (IRR = 1.76, 95% CI 1.03-3.00, P = 0.04), whereas age, sex, educational background, occupation, information and involvement preferences and presence of a caregiver were not related to patient question-asking behaviour. CONCLUSION: Physician endorsement of question-asking alone does not appear to increase questions by advanced cancer patients during consultations about PC. Additional resources such as QPLs may be needed to facilitate patient question-asking.

Cancer consultation preparation package: changing patients but not physicians is not enough.

PURPOSE: This study evaluated a cancer consultation preparation package (CCPP) designed to facilitate patient involvement in the oncology consultation. PATIENTS AND METHODS: A total of 164 cancer patients (67% response rate) were randomly assigned to receive the CCPP or a control booklet at least 48 hours before their first oncology appointment. The CCPP included a question prompt sheet, booklets on clinical decision making and patient rights, and an introduction to the clinic. The control booklet contained only the introduction to the clinic. Physicians were blinded to which intervention patients received. Patients completed questionnaires immediately after the consultation and 1 month later. Consultations were audiotaped, transcribed verbatim, and coded. RESULTS: All but one patient read the information. Before the consultation, intervention patients were significantly more anxious than were controls (mean, 42 v 38; P = .04); however anxiety was equivalent at follow-up. The CCPP was reported as being significantly more useful to family members than the control booklet (P = .004). Patients receiving the intervention asked significantly more questions (11 v seven questions; P = .005), tended to interrupt the physician more (1.01 v 0.71 interruptions; P = .08), and challenged information significantly more often (twice v once; P = .05). Patients receiving the CCPP were less likely to achieve their preferred decision making style (22%) than were controls (35%; P = .06). CONCLUSION: This CCPP influences patients' consultation behavior and does not increase anxiety in the long-term. However, this intervention, without physician endorsement, reduced the percentage of patients whose preferred involvement in decision making was achieved.

Second opinions in oncology: the experiences of patients attending the Sydney Cancer Centre.

OBJECTIVE: To investigate the frequency, goals and outcomes of second-opinion consultations at the Sydney Cancer Centre. DESIGN, SETTING AND PARTICIPANTS: A questionnaire-based study of patients who registered to see a medical oncologist at the Sydney Cancer Centre between January 2006 and January 2008 and who were seeking a second opinion. MAIN OUTCOME MEASURES: Proportion and demographic characteristics of patients who had previously seen a medical oncologist and who stated they were seeking a second opinion. RESULTS: 123 of 1892 new patients (6.5%) stated that they were seeking a second opinion, of whom 22 declined study participation, were excluded from study participation or had been referred specifically for enrolment in a particular clinical trial. Of the remaining 101 patients, 77 completed a questionnaire; 59 were women and 26 had a university degree. Reasons for seeking second opinions included: to obtain information related to treatment (54 patients), for reassurance about diagnosis or treatment (47), and dissatisfaction with the information given by the first medical oncologist (24). Sixty-four patients reported that they received new information at the second-opinion consultation, with 45 identifying discussion of treatment options and 34 identifying discussion of future or prognosis. Fifty-one patients reported how the second-opinion consultation differed from the first, identifying it as longer (24), and indicating that the oncologist answered concerns (26). Most patients were aware of multidisciplinary teams and treatment guidelines, but fewer had read guidelines. CONCLUSIONS: Patients seeking a second opinion from a medical oncologist are typically more educated, younger and female, probably due to preferences for more detailed information. The most common reasons for seeking a second opinion were to obtain additional information or reassurance about recommended management.

Does age really matter? Recall of information presented to newly referred patients with cancer.

PURPOSE: To examine age- and age-related differences in recall of information provided during oncology consultations. PATIENTS AND METHODS: Two hundred sixty patients with cancer diagnosed with heterogeneous cancers, seeing a medical or radiation oncologist for the first time, participated in the study. Patients completed questionnaires assessing information needs and anxiety. Recall of information provided was measured using a structured telephone interview in which patients were prompted to remember details physicians gave about diagnosis, prognosis, and treatment. Recall was checked against the actual communication in audio-recordings of the consultations. RESULTS: Recall decreased significantly with age, but only when total amount of information presented was taken into account. This indicates that if more information is discussed, older patients have more trouble remembering the information than younger ones. In addition, recall was selectively influenced by prognosis. First, patients with a poorer prognosis recalled less. Next, the more information was provided about prognosis, the less information patients recalled, regardless of their actual prognosis. CONCLUSION: Recall is not simply a function of patient age. Age only predicts recall when controlling for amount of information presented. Both prognosis and information about prognosis are better predictors of recall than age. These results provide important insights into intervention strategies to improve information recall in patients with cancer.

Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care.

PURPOSE: To determine whether provision of a question prompt list (QPL) influences advanced cancer patients'/caregivers' questions and discussion of topics relevant to end-of-life care during consultations with a palliative care (PC) physician. PATIENTS AND METHODS: This randomized controlled trial included patients randomly assigned to standard consultation or provision of QPL before consultation, with endorsement of the QPL by the physician during the consultation. Consecutive eligible patients with advanced cancer referred to 15 PC physicians from nine Australian PC services were invited to participate. Consultations were audiotaped, transcribed, and analyzed by blinded coders; patients completed questionnaires before, within 24 hours, and 3 weeks after the consultation. RESULTS: A total of 174 patients participated (92 QPL, 82 control). Compared with controls, QPL patients and caregivers asked twice as many questions (for patients, ratio, 2.3; 95% CI, 1.7 to 3.2; P < .0001), and patients discussed 23% more issues covered by the QPL (95% CI, 11% to 37%; P < .0001). QPL patients asked more prognostic questions (ratio, 2.3; 95% CI, 1.3 to 4.0; P = .004) and discussed more prognostic (ratio, 1.43; 95% CI, 1.1 to 1.8, P = .003) and end-of-life issues (30% v 10%; P = .001). Fewer QPL patients had unmet information needs about the future (21 = 4.14; P = .04), which was the area of greatest unmet information need. QPL consultations (average, 38 minutes) were longer (P = .002) than controls (average, 31 minutes). No differences between groups were observed in anxiety or patient/physician satisfaction. CONCLUSION: Providing a QPL and physician endorsement of its use assists terminally ill cancer patients and their caregivers to ask questions and promotes discussion about prognosis and end-of-life issues, without creating patient anxiety or impairing satisfaction.