A patient perspective on shared decision making in stage I non-small cell lung cancer: a mixed methods study.

BACKGROUND: Surgery and stereotactic ablative radiotherapy (SABR) are both curative treatment options for patients with a stage I non-small cell lung cancer (NSCLC). Consequently, there is growing interest in studying the role of patients in treatment decision making. We studied how patients with stage I NSCLC perceived shared decision making (SDM) in general, and how they viewed different aspects of SDM. METHODS: A sequential mixed methods design was used, consisting of qualitative interviews (N=11), as well as a survey study (N=76) focusing on different SDM-related aspects. Participants were interviewed to understand their own experience with treatment decision making. In the survey study, patients rated the importance of 20 aspects of shared decision making that were identified during interviews. Descriptive analysis and explorative factor analysis were performed. RESULTS: We assessed six qualitative themes covering SDM aspects that were determined by patients to be important. The survey identified four SDM-related factors with sufficient internal consistency, namely (1) 'guidance by clinician' (α=.741), (2) 'conduct of clinician' (α=.774); (3) 'preparation for treatment decision making' (α=.864); and (4) 'active role of patient in treatment decision making' (α=.782). Of these, clinician guidance was rated as most important by patients (M=3.61; SD=.44). Only 28.9% of patients in the survey study reported that both treatment options were discussed with them. CONCLUSIONS: Patients with a stage I NSCLC found clinician guidance to be important when making treatment decisions. Nevertheless, the majority of patients reported not being offered both treatment options, which might have influenced this finding.

Congruence between patients' preferred and perceived participation in medical decision-making: a review of the literature.

BACKGROUND: Patients are increasingly expected and asked to be involved in health care decisions. In this decision-making process, preferences for participation are important. In this systematic review we aim to provide an overview the literature related to the congruence between patients' preferences and their perceived participation in medical decision-making. We also explore the direction of mismatched and outline factors associated with congruence. METHODS: A systematic review was performed on patient participation in medical decision-making. Medline, PsycINFO, CINAHL, EMBASE and the Cochrane Library databases up to September 2012, were searched and all studies were rigorously critically appraised. In total 44 papers were included, they sampled contained 52 different patient samples. RESULTS: Mean of congruence between preference for and perceived participation in decision-making was 60% (49 and 70 representing 25th and 75th percentiles). If no congruence was found, of 36 patient samples most patients preferred more involvement and of 9 patient samples most patients preferred less involvement. Factors associated with preferences the most investigated were age and educational level. Younger patients preferred more often an active or shared role as did higher educated patients. CONCLUSION: This review suggests that a similar approach to all patients is not likely to meet patients' wishes, since preferences for participation vary among patients. Health care professionals should be sensitive to patients individual preferences and communicate about patients' participation wishes on a regular basis during their illness trajectory.

Communicating cancer treatment information using the Web: utilizing the patient's perspective in website development.

BACKGROUND: Online cancer information can support patients in making treatment decisions. However, such information may not be adequately tailored to the patient's perspective, particularly if healthcare professionals do not sufficiently engage patient groups when developing online information. We applied qualitative user testing during the development of a patient information website on stereotactic ablative radiotherapy (SABR), a new guideline-recommended curative treatment for early-stage lung cancer. METHODS: We recruited 27 participants who included patients referred for SABR and their relatives. A qualitative user test of the website was performed in 18 subjects, followed by an additional evaluation by users after website redesign (N = 9). We primarily used the 'thinking aloud' approach and semi-structured interviewing. Qualitative data analysis was performed to assess the main findings reported by the participants. RESULTS: Study participants preferred receiving different information that had been provided initially. Problems identified with the online information related to comprehending medical terminology, understanding the scientific evidence regarding SABR, and appreciating the side-effects associated with SABR. Following redesign of the website, participants reported fewer problems with understanding content, and some additional recommendations for better online information were identified. CONCLUSIONS: Our findings indicate that input from patients and their relatives allows for a more comprehensive and usable website for providing treatment information. Such a website can facilitate improved patient participation in treatment decision-making for cancer.

Treatment recommendations by clinicians in stage I non-small cell lung cancer: A study of factors that influence the likelihood of accounting for the patient's preference.

OBJECTIVES: Surgery and stereotactic ablative radiotherapy (SABR) are both curative treatment options for patients with stage I non-small cell lung cancer (NSCLC). Shared decision making (SDM) has been advocated in this patient group. This study explored clinician decision making in relation to the stated treatment preferences of patients. METHODS: In a previous study, we conducted a binary choice experiment with hypothetical cases among 126 clinicians. Secondary data analysis was performed using multilevel logistic regression models, in which random differences between clinicians' decisions were taken into account. We analyzed the influence of patient- and clinician-related characteristics, and uncertainty as experienced by clinicians about their recommendation on the clinician's decision (either in line with the patient's preference or not). RESULTS: Significant interactions were observed between patient- and clinician-related characteristics, indicating that patient preferences were selectively taken into account, depending on clinicians' specialty, their views about the comparability of cancer-related outcomes following surgery and SABR, and the degree of uncertainty about the treatment recommendation. CONCLUSIONS: Our findings suggest that SDM for stage I NSCLC care is largely influenced by how clinicians weigh available scientific evidence. PRACTICE IMPLICATIONS: Clinicians should involve lung cancer patients more and ask for their preferences in making treatment recommendations.

Differences between pulmonologists, thoracic surgeons and radiation oncologists in deciding on the treatment of stage I non-small cell lung cancer: A binary choice experiment.

BACKGROUND AND PURPOSE: Surgery is the standard of care in stage I non-small cell lung cancer (NSCLC), but stereotactic ablative radiotherapy (SABR) is increasingly used to treat patients at high-risk for surgical complications. We studied which patient- and clinician-related characteristics influenced treatment recommendations. MATERIAL AND METHODS: A binary choice experiment with hypothetical cases was conducted. Cases varied on five patient-related characteristics: patient age, Chronic Obstructive Pulmonary Disease Global Initiative for Chronic Obstructive Lung Disease (COPD GOLD) score, Charlson co-morbidity index, World Health Organization performance status (WHO-PS) and patient treatment preference (surgery/SABR). Clinician characteristics were recorded. Responses were analyzed using generalized linear mixed models. RESULTS: 126 clinicians completed the survey. All patient-related characteristics, the clinician speciality, and whether clinicians considered outcomes of surgery comparable to SABR, significantly influenced treatment recommendations. Pulmonologists were most influenced by WHO-PS and comorbidity, whereas comorbidity and age had greatest influence on radiation oncologists and surgeons. Clinicians were less influenced by stated patient preference and COPD GOLD score. Limited consistency was observed in treatment recommendations. CONCLUSIONS: This study suggests that more efforts are needed to develop uniform approaches for making treatment recommendations, and also to incorporate patient preferences when making treatment decisions for stage I NSCLC.

An evaluation of websites providing patient information on stereotactic body radiation therapy (SBRT) for stage I lung cancer in three Western European countries.

BACKGROUND: The use of stereotactic body radiation therapy (SBRT) for the treatment of stage I lung cancer has been associated with improvements in population-based survival in Western Europe. As patients are increasingly accessing the Internet for information on health-related topics, we evaluated the quality, usability and readability of online patient information about SBRT in three adjacent Western European countries. MATERIALS AND METHODS: We conducted a web search and analysis between May - June 2011. Thirteen key terms were entered into the Google search engine. We analyzed websites from the Netherlands, Germany and the United Kingdom, by using the DISCERN instrument, a tool designed to assess the quality of health information on treatment choices. In addition, websites' usability and readability were examined. RESULTS: We identified a total of 20 websites. None of the websites received an excellent or good quality rating and only two were rated as fair (both from the United Kingdom). DISCERN scores rated 55% (N = 11) of the websites as poor, and 35% (N = 7) as very poor. Dutch websites had the lowest scores. Five websites attained relatively high usability scores, and none had sufficient readability scores. CONCLUSIONS: Despite the fact that SBRT is widely used as a standard therapy in elderly patients with stage I NSCLC in the Netherlands, only limited high quality information is available on the Internet. Improvements in quality information available on the Internet are required in order to increase patient participation in decision-making.

Accuracy of quick and easy undernutrition screening tools--Short Nutritional Assessment Questionnaire, Malnutrition Universal Screening Tool, and modified Malnutrition Universal Screening Tool--in patients undergoing cardiac surgery.

The objective of this study was to compare the quick-and-easy undernutrition screening tools, ie, Short Nutritional Assessment Questionnaire and Malnutrition Universal Screening Tool, in patients undergoing cardiac surgery with respect to their accuracy in detecting undernutrition measured by a low-fat free mass index (FFMI; calculated as kg/m(2)), and secondly, to assess their association with postoperative adverse outcomes. Between February 2008 and December 2009, a single-center observational cohort study was performed (n=325). A low FFMI was set at ≤14.6 in women and ≤16.7 in men measured using bioelectrical impedance spectroscopy. To compare the accuracy of the Malnutrition Universal Screening Tool and Short Nutritional Assessment Questionnaire in detecting low FFMI sensitivity, specificity, and other accuracy test characteristics were calculated. The associations between the Malnutrition Universal Screening Tool and Short Nutritional Assessment Questionnaire and adverse outcomes were analyzed using logistic regression analyses with odds ratios and 95% confidence intervals (CI) presented. Sensitivity and receiver operator characteristic-based area under the curve to detect low FFMI were 59% and 19%, and 0.71 (95% CI: 0.60 to 0.82) and 0.56 (95% CI: 0.44 to 0.68) for the Malnutrition Universal Screening Tool and Short Nutritional Assessment Questionnaire, respectively. Accuracy of the Malnutrition Universal Screening Tool improved when age and sex were added to the nutritional screening process (sensitivity 74%, area under the curve: 0.72 [95% CI: 0.62 to 0.82]). This modified version of the Malnutrition Universal Screening Tool, but not the original Malnutrition Universal Screening Tool or Short Nutritional Assessment Questionnaire, was associated with prolonged intensive care unit and hospital stay (odds ratio: 2.1, 95% CI: 1.3 to 3.4; odds ratio: 1.6, 95% CI: 1.0 to 2.7). The accuracy to detect a low FFMI was considerably higher for the Malnutrition Universal Screening Tool than for the Short Nutritional Assessment Questionnaire, although still marginal. Further research to evaluate the modified version of the Malnutrition Universal Screening Tool, ie, the cardiac surgery-specific Malnutrition Universal Screening Tool, is needed prior to implementing.