Shared decision making in oncology: A model based on patients', health care professionals', and researchers' views.

OBJECTIVE: To construct a model of shared decision making (SDM) about cancer treatment by conducting an extensive consultation of stakeholders, informed by the literature. METHODS: We interviewed 76 stakeholders: cancer patients, potential future patients, oncologists, nurses, and SDM-researchers. We asked, "If I say 'Doctors and patients making decisions together about cancer treatment,' what does this make you think about?" Ideas were further solicited by presenting 19 cards each describing a possible SDM element. Interviews were inductively coded and analysed, and the emerging themes were integrated into a model. RESULTS: The model that was based on participants' views assigns specific roles in SDM to both oncologists and patients. Oncologists determine possible treatments, emphasise the importance of patients' opinion, explain treatment options, get to know patients, guide patients, and provide treatment recommendations. Patients ask questions, express thoughts and feelings, consider options, offer opinions, and decide or delegate decisions to oncologists. Outside consultations, patients search for information, prepare questions, and consider options. CONCLUSIONS: Next to oncologists' role, cancer patients also have a clear role in SDM about cancer treatment, during and outside consultations. Patients should receive the support they need to fulfil this requirement.

Patient explicit consideration of tradeoffs in decision making about rectal cancer treatment: benefits for decision process and quality of life.

Introduction: Patient preferences are often not discussed in treatment decisions in oncology. We introduced an online values clarification method (VCM) to help newly diagnosed rectal cancer patients participate in shared decision making about short-course preoperative radiotherapy. Material and Methods: We offered a link to the VCM to a subset of consecutive patients before the pretreatment consultation with the radiation oncologist. Consultations were audiotaped and coded for expressions of patient preferences. Patients were asked to complete pre- and post-consultation questionnaires. Questionnaires assessed values clarity, decision regret and presence and impact of fecal incontinence and sexual problems. Results: Of 135 patients who had their consultation audiotaped and completed questionnaires, 35 received and accessed the VCM-link. Patients in the VCM-group slightly more often expressed preferences during consultations. Questionnaire data showed that patients in the VCM-group did not differ in how clear their values were, but experienced lower regret and less impact of treatment harms at 6 months follow-up; differences were non-significant but in the same direction at 12 months. Discussion: This is the first study to assess the effect of an adaptive conjoint analysis-based VCM on actual patient-clinician communication, and long-term decision regret and impact of treatment harms. Being explicitly invited to think about treatment benefits and harms seems to help patients to live with treatment consequences.

A blended learning for general practitioners and nurses on skills to support shared decision-making with patients about palliative cancer treatment: A one-group pre-posttest study.

OBJECTIVE: To evaluate a newly developed blended learning programme for general practitioners (GPs) and nurses in supporting shared decision making (SDM) about palliative cancer treatment in a simulated setting. METHODS: In a pre-posttest study, healthcare professionals (HCPs) participated in the blended learning (i.e. e-learning and (online) training session). HCPs filled out surveys (T0 (baseline), T1 (after e-learning) and T2 (after full blended learning)) and engaged in simulated consultations at T0 and T2. The primary outcome was observed SDM support (Triple-S; DSAT-10 for validation). Secondary outcomes included satisfaction, knowledge about and attitude towards SDM support. Repeated measures General Linear Models were conducted. RESULTS: 33 HCPs (17 GPs and 16 nurses) participated. SDM support significantly improved after training (Triple-S; medium effect). Observers' overall rating of SDM support (medium effect) as well as HCPs' knowledge (large effect) and beliefs about their capabilities (medium effect) improved after training. There was no difference in decision support skills (DSAT-10), HCPs' other clinical behavioural intentions and satisfaction. HCPs evaluated the training positively. CONCLUSION: Blended learning for HCPs on supporting SDM in palliative cancer care improved their skills, knowledge and confidence in simulated consultations. PRACTICE IMPLICATIONS: These first findings are promising for evaluating interprofessional SDM in clinical practice.

The relation between illness cognitions and quality of life in people with and without a stoma following rectal cancer treatment.

OBJECTIVES: To compare health-related quality of life, emotional functioning and illness cognitions between people with and without a stoma after rectal cancer treatment about 8 years ago and to examine the relation between illness cognitions and health-related quality of life and emotional functioning. METHODS: Sixty-two people who had undergone abdominoperineal resection with a permanent stoma and 60 people who had undergone low anterior resection without a permanent stoma participated. Questionnaires included the European Organization of Research and Treatment of Cancer Quality of Life Questionnaire-C30, the Hospital Anxiety and Depression Scale, and the Illness Cognition Questionnaire. RESULTS: There were no significant differences between people with and without a stoma in health-related quality of life, emotional functioning and illness cognitions. There were moderate and significant relations between the illness cognitions helplessness (negative) and disease acceptance (positive) on the one hand and health-related quality of life and emotional functioning on the other. For helplessness this relation barely differed between people with and without a stoma, but for disease acceptance this relation was stronger for people without a stoma than for people with a stoma. CONCLUSIONS: The study showed no differences in health-related quality of life, but a stronger relation between disease acceptance and health-related quality of life for people without a stoma than for people with a stoma. If this relation is causal, people with negative illness cognitions after rectal cancer treatment might be identified and offered help.

Promoting shared decision making in advanced cancer: Development and piloting of a patient communication aid.

OBJECTIVE: To learn how to configure a patient communication aid (PCA) to facilitate shared decision-making (SDM) about treatment for advanced cancer. METHODS: The PCA consists of education about SDM, a question prompt list, and values clarification methods. Study 1. A first version was presented to 13 patients, 8 relatives and 14 bereaved relatives in interviews. Study 2. A second version was used by 18 patients in a pilot study. Patients and oncologists were interviewed, patients were surveyed, and consultations were audio-recorded. RESULTS: Respondents reported that the aid facilitated patient control over information, raised choice awareness and promoted elaboration. Risks were identified, most importantly that the aid might upset patients. Also, some respondents reported that the PCA did not, or would not support decision making because they felt sufficiently competent, did not perceive a role for themselves, or did not perceive that the decision required elaboration. CONCLUSIONS: Opinions on the usefulness of the PCA varied. It was challenging to raise awareness about the presence of a choice, and to find a balance between comprehensive information and sensitivity. PRACTICE IMPLICATIONS: A future study should demonstrate whether the PCA can improve SDM, and whether this effect is stronger when oncologists receive training.

Evaluation of the treatment tradeoff method in rectal cancer patients: is surgery preference related to outcome utilities?

BACKGROUND: The treatment tradeoff method (TTM) has been developed specifically for decision making at the level of the individual patient. The task is tailored to the clinical decision problem at hand and may therefore be more relevant to patients than methods of outcome valuation. Despite its wide use in oncology research, few methodological studies regarding validity have been conducted. OBJECTIVE AND METHODS: The present study evaluates the validity of the TTM in rectal cancer patients who had undergone either 1 of 2 surgery types: 1 requiring a permanent stoma (stoma group) and 1 involving a postoperative risk of fecal incontinence (no-stoma group). The authors relate the surgery preference scores to the utilities of the 2 main surgery outcome states as well as to their utility difference. RESULTS: Surgery preference was more strongly associated with the utility difference (r > 0.54 in the total patient group) than with the utilities of the surgery outcome states per se (r < 0.44 in the total patient group). In the stoma group, surgery preference was especially related to the utility of incontinence and in the no-stoma group especially to the utility of a permanent stoma. CONCLUSIONS: Patients indeed use their valuations of treatment outcomes states, especially those they are less familiar with, in determining their preference for one treatment over another. In clinical practice, the TTM may be used to obtain an indication of the treatment preference of an individual patient and may also be helpful to detect patients' motives to choose one treatment over another.

Considering patient values and treatment preferences enhances patient involvement in rectal cancer treatment decision making.

BACKGROUND: The shared decision making (SDM) model states that patients' values and preferences should be clarified to choose a strategy that best fits the patient. This study aimed to assess whether values and preferences of rectal cancer patients are voiced and considered in deciding about preoperative radiotherapy (PRT), and whether this makes patients feel more involved in treatment decision making. METHODS: Pre-treatment consultations of radiation oncologists and patients eligible for PRT were audiotaped (N=90). Tapes were transcribed and coded to identify patients' values and treatment preferences. Patients filled in a post-consultation questionnaire on their perceived involvement in decision making (N=60). RESULTS: Patients' values were voiced for 62/611 of benefits/harms addressed (10%), in 38/90 consultations (42%; maximum 4 values per consultation), and most often related to major long-term treatment outcomes. Patients' treatment preferences were discussed in 20/90 consultations (22%). In 16/90 consultations (18%), the oncologists explicitly indicated to consider patients' values or preferences. Patients perceived a significantly more active role in decision making if their values or preferences had been voiced or considered. CONCLUSIONS: Patients' values and treatment preferences are voiced or considered in a minority of consultations. If they are, this increases patients' perceived involvement in the decision making process.

Disentangling breast cancer patients' perceptions and experiences with regard to endocrine therapy: nature and relevance for non-adherence.

BACKGROUND & STUDY AIMS: Adjuvant endocrine therapy effectively prevents recurrence and progression of estrogen-receptor positive breast cancer. However, studies reveal substantial non-adherence. The objective was therefore to identify the nature of the experiences and beliefs of women treated with endocrine therapy in an attempt to find potential determinants of non-adherence. METHOD: Online Focus Groups (OFGs) and individual interviews were conducted with 37 women who were treated with endocrine therapy. Sixty-three statements derived from the OFGs and 11 belief items from the Beliefs about Medicines Questionnaire (BMQ) were used in a Q-sorting task conducted with 14 of the women. The quantitative Q-sorting data were statistically analyzed with Hierarchical Cluster Analysis. RESULTS: A six cluster solution was revealed that included the clusters 'information', 'efficacy', 'tenacity', 'coping', 'side effects' and 'usage'. Women's own experiences and perceptions were not clearly delineated from the beliefs measured with the BMQ. However, women judged their own experiences and perceptions with regard to endocrine therapy as more relevant for adherence than the BMQ beliefs. CONCLUSION: In order to understand and to improve women's adherence to endocrine therapy, women's own perceptions and experiences about endocrine therapy should be targeted in addition to common beliefs that apply to a wide range of medicines.

Adaptive Conjoint Analysis as individual preference assessment tool: feasibility through the internet and reliability of preferences.

OBJECTIVE: Patient values are not routinely assessed in clinical practice. Adaptive Conjoint Analysis (ACA) is increasingly applied in studies assessing treatment preferences, and could provide a means to routinely assess individual patients' treatment preferences. METHODS: An ACA-questionnaire was administered three times (7-10 days apart) to 98 long-term rectal cancer survivors either on a portable computer or through internet, to assess whether (a) responses differ according to administration mode, (b) relative importances of rectal cancer treatment outcomes (survival, local control, incontinence, sexual problems) consolidate over time, (c) ACA-outcomes are sufficiently reliable (ICC) for use in individual decision-making. We also evaluated patients' acceptance of ACA. RESULTS: Mode did not affect ACA-completion or evaluation. Importance scores did not consolidate over time. ICCs were poor for sexual problems and fair for the other outcomes, and were at least equal or higher from first to second retest. Most participants valued completing the ACA-questionnaire and learning their results. CONCLUSION: Values did not show consolidation over time. ACA-derived preferences should not determine which treatment patients should choose. PRACTICE IMPLICATIONS: Findings extend ACA-validation studies to the health care setting and suggest that ACA-questionnaires might be appreciated as adjuncts to treatment decision-making in newly diagnosed patients.