Relations between recurrence risk perceptions and fear of cancer recurrence in breast cancer survivors.

PURPOSE: This study aimed to: (1) determine the accuracy of Dutch breast cancer survivors' estimations of the locoregional recurrence risk (LRR); (2) examine which variables influence (the accuracy of) risk estimations, and risk appraisals; and (3) investigate the influence of the objective LRR risk (estimated using the INFLUENCE-nomogram), risk estimations and risk appraisals on fear of cancer recurrence (FCR). Findings of this study will inform clinicians on risk communication and can improve communication about FCR. METHODS: In a cross-sectional survey among 258 breast cancer survivors, women's recurrence risk estimations (in odds) and risk appraisals (in high/low), FCR, demographics and illness perceptions, about one year after surgery were measured and compared to the objective risk for LRRs estimated using the INFLUENCE-nomogram. RESULTS: Half of the women (54%) accurately estimated their LRR risk, 34% underestimated and 13% overestimated their risk. Risk estimations and risk appraisals were only moderately positively correlated (r = 0.58). Higher risk appraisals were associated with radiotherapy (r = 0.18) and having weaker cure beliefs (r = - 0.19). Younger age was associated with overestimation of risk (r = - 0.23). Recurrence risk estimations and risk appraisals were associated with more FCR (r = 0.29, r = 0.39). In regression, only risk appraisal contributed significantly to FCR. CONCLUSION: Although women were fairly accurate in recurrence risk estimations, it remains difficult to predict over- or underestimation. Recurrence risk estimations and risk appraisal are two different concepts which are both associated with FCR and should therefore be addressed in patient-provider communication.

Development of a patient decision aid for discharge planning of hospitalized patients with stroke.

BACKGROUND: Patient involvement in discharge planning of patients with stroke can be accomplished by providing personalized outcome information and promoting shared decision-making. The aim of this study was to develop a patient decision aid (PtDA) for discharge planning of hospitalized patients with stroke. METHODS: A convergent mixed methods design was used, starting with needs assessments among patients with stroke and health care professionals (HCPs). Results of these assessments were used to develop the PtDA with integrated outcome information in several co-creation sessions. Subsequently, acceptability and usability were tested to optimize the PtDA. Development was guided by the International Patient Decision Aids Standards (IPDAS) criteria. RESULTS: In total, 74 patients and 111 HCPs participated in this study. A three-component PtDA was developed, consisting of: 1) a printed consultation sheet to introduce the options for discharge destinations, containing information that can be specified for each individual patient; 2) an online information and deliberation tool to support patient education and clarification of patient values, containing an integrated "patients-like-me" model with outcome information about discharge destinations; 3) a summary sheet to support actual decision-making during consultation, containing the patient's values and preferences concerning discharge planning. In the acceptability test, all qualifying and certifying IPDAS criteria were fulfilled. The usability test showed that patients and HCPs highly appreciated the PtDA with integrated outcome information. CONCLUSIONS: The developed PtDA was found acceptable and usable by patients and HCPs and is currently under investigation in a clinical trial to determine its effectiveness.