Abstract

BackgroundWomen diagnosed with early stage (I or II) breast cancer face a highly challenging decision – whether or not to undergo adjuvant chemotherapy. We developed a decision quality instrument for chemotherapy for early stage breast cancer and sought to evaluate its performance.MethodsCross-sectional, mailed survey of recent breast cancer survivors, providers, and healthy controls and a retest survey of survivors. The decision quality instrument includes questions on knowledge and personal goals. It results in a knowledge score and concordance score, which reflects the percentage of patients who received treatments that match their goals. Hypotheses related to acceptability, feasibility, validity, and reliability of the survey instrument were examined.ResultsResponses were received from 352 patients, 89 providers and 35 healthy controls. The decision quality instrument was feasible to implement with few missing data. The knowledge scores had good retest reliability (intraclass correlation coefficient (ICC) =0.75). Knowledge scores discriminated between providers and patients (mean difference 31.1%, 95% CI 26.9, 35.3) and between patients and healthy controls (mean difference 11.2, 95% CI 5.4, 17.1). Most providers reported that the knowledge items covered essential content. Two of the five goal items had a ceiling effect, and one goal had low content validity. The goal items had moderate retest reliability (ICC’s 0.57 to 0.78). In the multivariable model of treatment, none of the patient goals was associated with receipt of chemotherapy. Age and hormone receptor status were the only variables independently associated with chemotherapy. Most patients (77.6%) had treatment concordant with that predicted by the model. Patients who had concordant treatment had similar levels of confidence and regret as those who did not.ConclusionsThe Decision Quality Instrument is a reliable and valid measure of patient knowledge about chemotherapy, but its ability to measure concordance with patient goals is limited. In this sample, patient goals were not associated with treatment, and most patients reported they were not asked their preference, suggesting that goals were not adequately considered in decision making.

Highlights

  • Women diagnosed with early stage (I or II) breast cancer face a highly challenging decision – whether or not to undergo adjuvant chemotherapy

  • To address the need for better assessment of quality in chemotherapy decisions, we developed a survey instrument to measure patient knowledge and preferences about chemotherapy for early stage breast cancer, and evaluated its psychometric properties in a field test in breast cancer survivors

  • Sample characteristics This study was part of a larger study of breast cancer treatment decisions, in which some patients received the survey on systemic therapy, and others received a survey on breast reconstruction

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Summary

Introduction

We developed a decision quality instrument for chemotherapy for early stage breast cancer and sought to evaluate its performance. Women diagnosed with early stage (I or II) breast cancer face a highly challenging decision – whether or not to undergo adjuvant chemotherapy. Chemotherapy can provide gains in survival after breast cancer, but it poses risks of serious toxicity Because of this tradeoff between survival gains and toxicity risks, clinical guidelines leave the decision about chemotherapy open to the patient and provider, for most patients with stage I disease [1,2]. For patients with stage II disease, guidelines clearly recommend chemotherapy [1]. For those patients, the decision about chemotherapy should be an informed one, for which the patient fully understands the risks and benefits of the treatment

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