The EORTC QLQ-CR29 quality of life questionnaire for colorectal cancer: validation of the Dutch version.

PURPOSE: To validate the Dutch version of the EORTC QLQ-CR29 quality of life questionnaire for colorectal cancer. METHODS: We translated and pilot-tested the original questionnaire in the Netherlands, following EORTC guidelines. We assessed factor structure, reliability and construct validity in different samples of patients from four hospitals. RESULTS: Of 296 patients, 236 (80 %) returned the questionnaire, and 27 out of 48 patients returned the retest questionnaire. In addition to the original three scales, we found a reliable bowel functioning scale (α = 0.80), reducing the number of individual items by five. Two of the other scales had sufficient to good reliability (urinary frequency, α = 0.71, original α = 0.75, body image α = 0.80, original α = 0.84), the third, blood and mucus in stool, only moderate (α = 0.56, original α = 0.69). Item functioning was sufficient to excellent for all but two items (urinary incontinence and dysuria). Construct validity was similar to that in earlier studies. CONCLUSION: We found a very satisfactory scale for bowel problems, in patients both with and without stoma. The body image and urinary incontinence scales were reliable, and construct validity was sufficient. We suggest the questionnaire to be adapted to decrease the number of individual items, improve the scales, and therefore increase reliability of the entire questionnaire.

Explaining differences in attitude toward adjuvant chemotherapy between experienced and inexperienced breast cancer patients.

PURPOSE: Previous studies have shown that patients who have experienced adjuvant chemotherapy (experienced patients) have a more favorable attitude towards chemotherapy than those who have not (inexperienced patients). However, not much is known about the reasons underlying this difference. According to the Theory of Planned Behavior, the attitude towards a particular behavior (eg, accepting chemotherapy) is based on beliefs about the likelihood of outcomes of the behavior and the evaluations of these outcomes. We used this theory to explore in what way the beliefs of experienced patients differed from those of inexperienced patients. PATIENTS AND METHODS: A cross-sectional survey was undertaken among 719 patients who had been treated for early-stage breast cancer between 1998 and 2003. Patients were asked, first, to indicate the likelihood of six positive and six negative outcomes of undergoing chemotherapy and, second, to give their evaluation of these outcomes. RESULTS: Four hundred forty-six women filled in the questionnaire (response rate, 62%). As hypothesized, experienced patients (ie, patients who had been treated with adjuvant chemotherapy as part of their primary treatment plan) had a more positive attitude towards chemotherapy. Experienced patients provided higher likelihood estimates of treatment advantages, such as life prolongation. In addition, they evaluated the positive outcomes of chemotherapy more favorably. With regard to the negative outcomes of chemotherapy, few differences were observed between treatment groups. CONCLUSION: Experienced patients have more confidence in the positive outcomes of chemotherapy than inexperienced patients. This might be the result of a cognitive mechanism to justify the way in which patients were treated.

Clinician and cancer patient views on patient participation in treatment decision-making: a quantitative and qualitative exploration.

Patient participation in treatment decision-making is being increasingly advocated, although cancer treatments are often guideline-driven. Trade-offs between benefits and side effects underlying guidelines are made by clinicians. Evidence suggests that clinicians are inaccurate at predicting patient values. The aim was to assess what role oncologists and cancer patients prefer in deciding about treatment, and how they view patient participation in treatment decision-making. Seventy disease-free cancer patients and 60 oncologists (surgical, radiation, and medical) were interviewed about their role preferences using the Control Preferences Scale (CPS) and about their views on patient participation using closed- and open-ended questions. Almost all participants preferred treatment decisions to be the outcome of a shared process. Clinicians viewed participation more often as reaching an agreement, whereas 23% of patients defined participation exclusively as being informed. Of the participants, > or = 81% thought not all patients are able to participate and > or = 74% thought clinicians are not always able to weigh the pros and cons of treatment for patients, especially not quality as compared with length of life. Clinicians seemed reluctant to share probability information on the likely impact of adjuvant treatment. Clinicians should acknowledge the legitimacy of patients' values in treatment decisions. Guidelines should recommend elicitation of patient values at specific decision points.

Stability of preferences with regard to adjuvant chemotherapy: impact of treatment decision, experience and the passing of time.

Research has shown that patients' preferences for adjuvant chemotherapy do not change as a result of experience. However, the preferences of experienced patients are usually more favourable than those of inexperienced patients. These results indicate a shift in preferences after the decision to proceed with adjuvant chemotherapy has been made, but before actual experience. We tested this assumption in early-stage breast and colorectal cancer patients. We asked patients to provide their preferences for chemotherapy before surgery and thus before they knew whether chemotherapy would be advised (T(1)), after surgery but before the start of chemotherapy (T(2)) and about 1 month after chemotherapy (T(3)). Patients who did not undergo chemotherapy co-operated at similar points in time. Preferences were measured on a nine-point scale, ranging from (1) 'very strong preference for no chemotherapy' to (9) 'very strong preference for chemotherapy'. As hypothesized, the preferences of patients who would be treated with chemotherapy became more favourable after the treatment decision had been made (n = 7, P = 0.06). The preferences of patients for whom chemotherapy was not part of the treatment plan showed the opposite effect (n = 38, P = 0.03). We did not find any effect of experiencing treatment (n = 22, P = 0.62) or the passing of time (n = 81, P = 0.25) on the stability of preferences. We conclude that the frequently observed discrepancy in treatment preferences between experienced and inexperienced patients seems to be an effect of the treatment decision and not of experience of the treatment.

Benefit from preoperative radiotherapy in rectal cancer treatment: disease-free patients' and oncologists' preferences.

Preoperative radiotherapy (PRT) in resectable rectal cancer improves local control but increases probability of faecal incontinence and sexual dysfunction. Consensus was reached in 2001 in the Netherlands on a guideline advising PRT to new patients. Purpose was to assess at what benefit oncologists and rectal cancer patients prefer PRT followed by surgery to surgery alone, and how oncologists and patients value various treatment outcomes. Sixty-six disease-free patients and 60 oncologists (surgical, radiation, medical) were interviewed. Minimally desired benefit from PRT (local control) was assessed using the Treatment Tradeoff Method. Importance of survival, local control, faecal incontinence, and sexual dysfunction in determining treatment outcome preferences was assessed using Adaptive Conjoint Analysis. The range of required benefit from PRT varied widely within participant groups. Seventeen percent of patients would choose PRT at a 0% benefit; 11% would not choose PRT for the maximum benefit of 11%. Mean minimally desired benefit excluding these two groups was 4%. For oncologists, the required benefit was 5%. Also, how strongly participants valued treatment outcomes varied widely within groups. Of the four outcomes, participants considered incontinence most often as most important. Relative treatment outcome importance differed between specialties. Patients considered sexual functioning more important than oncologists. Large differences in treatment preferences exist between individual patients and oncologists. Oncologists should adequately inform their patients about the risks and benefits of PRT, and elicit patient preferences regarding treatment outcomes.

How important is the opinion of significant others to cancer patients' adjuvant chemotherapy decision-making?

GOALS: Decisions regarding adjuvant chemotherapy are difficult, since value tradeoffs are involved. Little is known about the importance of the significant others in patients' decision-making regarding adjuvant treatment. We surveyed patients with breast and colorectal cancer about the importance they assigned to the opinions of their significant others and assessed correlates of these importance scores. MATERIALS AND METHODS: One hundred and twenty-three patients rated on a five-point scale how much they cared about the opinion of six significant others. MAIN RESULTS: Most important was the opinion of their treating specialist, followed by that of their partner, children, other family, friends, and colleagues. Women assigned higher scores to the opinion of their children, younger patients to that of their specialist, and patients who were about to undergo chemotherapy to that of their family. Patients with breast cancer and patients without paid employment assigned slightly more importance to the opinion of their partner. CONCLUSIONS: Information on the influence of significant others may help clinicians when involving patients in treatment decision-making and discussing patients' treatment preferences.