Purpose In this study, we explored how patients experience current information provision and decision-making about post-treatment surveillance after breast cancer. Furthermore, we assessed patients’ perspectives regarding less intensive surveillance in case of a low risk of recurrence. Methods We conducted semi-structured interviews with 22 women in the post-treatment surveillance trajectory in seven Dutch teaching hospitals. Results Although the majority of participants indicated a desire for shared decision-making (SDM) about post-treatment surveillance, participants experienced no SDM. Information provision was often suboptimal and unstructured. Participants were open for using risk information in decision-making, but hesitant towards less intensive surveillance. Perceived advantages of less intensive surveillance were: less distressing moments, leaving the patient role behind, and lower burden. Disadvantages were: fewer moments for reassurance, fear of missing recurrences, and a higher threshold for aftercare for side effects. Conclusions SDM about post-treatment surveillance is desirable. Although women are hesitant about less intensive surveillance, they are open to the use of personalised risk assessment for recurrences in decision-making about surveillance. Implications for Cancer Survivors To facilitate SDM about post-treatment surveillance, the timing and content of information provision should be improved. Risk information should be provided in an accessible and understandable way. Moreover, fear of cancer recurrence and other personal considerations should be addressed in the process of SDM.
Objective: Follow-up after breast cancer can be divided into surveillance and aftercare. It remains unclear how follow-up can ideally be organised from the perspective of health care professionals (HCPs). The aim of this study was to gain insight in the organisation of follow-up in seven Dutch teaching hospitals and to identify best practices and opportunities for improvement of breast cancer (all stages) follow-up as proposed by HCPs.Methods: Semi-structured in-depth group interviews were performed, one in each of the participating hospitals, with in total 16 HCPs and 2 patient advocates. To describe the organisation of follow-up, transcripts were analysed using a deductive approach. Best practices and opportunities were derived using an inductive approach.Results: Variation was found in the organisation of aftercare, especially in timing, frequency, and disciplines of involved HCPs. Less variation was observed for surveillance, which was guided by the national guideline. Best practices focused on case management and adequate collaboration between HCPs of different disciplines.Mentioned opportunities were improving the structured monitoring of patients' needs and a comprehensive guideline for organisation and content of aftercare.Conclusions: Variation in follow-up existed between hospitals. Shared decisionmaking (SDM) about surveillance is desirable to ensure that surveillance matches the patient needs, preferences, and personal risk for recurrences.
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.
IntroductionWithin the value-based healthcare framework, outcome data can be used to inform patients about (treatment) options, and empower them to make shared decisions with their health care professional. To facilitate shared decision-making (SDM) supported by outcome data, a multicomponent intervention has been designed, including patient decision aids on the organisation of post-treatment surveillance (breast cancer); discharge location (stroke) and treatment modality (advanced kidney disease), and training on SDM for health care professionals. The SHared decision-making supported by OUTcome information (SHOUT) study will examine the effectiveness of the intervention and its implementation in clinical practice.Methods and analysisMultiple interrupted time series will be used to stepwise implement the intervention. Patients diagnosed with either breast cancer (N=630), stroke (N=630) or advanced kidney disease (N=473) will be included. Measurements will be performed at baseline, three (stroke), six and twelve (breast cancer and advanced kidney disease) months. Trends on outcomes will be measured over a period of 20 months. The primary outcome will be patients’ perceived level of involvement in decision-making. Secondary outcomes regarding effectiveness will include patient-reported SDM, decisional conflict, role in decision-making, knowledge, quality of life, preferred and chosen care, satisfaction with the intervention, healthcare utilisation and health outcomes. Outcomes regarding implementation will include the implementation rate and a questionnaire on the health care professionals’ perspective on the implementation process.Ethics and disseminationThe Medical research Ethics Committees United in Nieuwegein, the Netherlands, has confirmed that the Medical Research Involving Human Subjects Act does not apply to this study. Bureau Onderzoek & Innovatie of Santeon, the Netherlands, approved this study. The results will contribute to insight in and knowledge on the use of outcome data for SDM, and can stimulate sustainable implementation of SDM.Trial registration numberNL8374, NL8375 and NL8376.
UNSTRUCTURED Background and objective: The aim of this study was to develop a patient decision aid (PtDA), integrating personalised risk calculations on risks for recurrences, to support shared decision-making (SDM) about personalised surveillance after curative treatment for invasive breast cancer. Methods: For the development of the PtDA, the International Patient Decision Aids Standards (IPDAS) development process was combined with a mixed-methods design consisting of decisional needs assessment studies, prototyping, and alpha and beta testing. The composed steering group convened in regular working group sessions throughout the development process. Results: The “Breast Cancer Surveillance Decision Aid” consists of three components that each support a step in the SDM process: 1) a handout sheet on which personalised risks for recurrences, calculated using the INFLUENCE-nomogram, can be visualised and which contains explanation about the decision for post-treatment surveillance and a login code for an online deliberation tool; 2) an online deliberation tool, including a patient reported outcome measure on fear of cancer recurrence; and 3) a summary sheet summarising patients’ preferences and considerations. The PtDA was assessed as usable and acceptable during alpha testing. Conclusions: We developed an acceptable and usable PtDA integrating personalised risk calculations on risks for recurrences to support SDM about surveillance after breast cancer. The implementation and effects of the use of the “Breast Cancer Surveillance Decision Aid” are currently being investigated in a clinical trial.
Background Although the treatment for breast cancer is highly personalized, posttreatment surveillance remains one-size-fits-all: annual imaging and physical examination for at least five years after treatment. The INFLUENCE nomogram is a prognostic model for estimating the 5-year risk for locoregional recurrences and second primary tumors after breast cancer. The use of personalized outcome data (such as risks for recurrences) can enrich the process of shared decision-making (SDM) for personalized surveillance after breast cancer. Objective This study aimed to develop a patient decision aid (PtDA), integrating personalized risk calculations on risks for recurrences, to support SDM for personalized surveillance after curative treatment for invasive breast cancer. Methods For the development of the PtDA, the International Patient Decision Aids Standards development process was combined with a mixed methods design inspired by the development process of previously developed PtDAs. In the development, 8 steps were distinguished: establishing a multidisciplinary steering group; definition of the end users, scope, and purpose of the PtDA; assessment of the decisional needs of end users; defining requirements for the PtDA; determining the format and implementation strategy for the PtDA; prototyping; alpha testing; and beta testing. The composed steering group convened during regular working-group sessions throughout the development process. Results The “Breast Cancer Surveillance Decision Aid” consists of 3 components that support the SDM process: a handout sheet on which personalized risks for recurrences, calculated using the INFLUENCE-nomogram, can be visualized and which contains an explanation about the decision for surveillance and a login code for a web-based deliberation tool; a web-based deliberation tool, including a patient-reported outcome measure on fear of cancer recurrence; and a summary sheet summarizing patient preferences and considerations. The PtDA was assessed as usable and acceptable during alpha testing. Beta testing is currently ongoing. Conclusions We developed an acceptable and usable PtDA that integrates personalized risk calculations for the risk for recurrences to support SDM for surveillance after breast cancer. The implementation and effects of the use of the “Breast Cancer Surveillance Decision Aid” are being investigated in a clinical trial.
Background Patient decision aids (PtDAs) support patients and clinicians in shared decision-making (SDM). Real-world outcome information may improve patients’ risk perception, and help patients make decisions congruent with their expectations and values. Our aim was to develop an online PtDA to support kidney failure treatment modality decision-making, that: 1) provides patients with real-world outcome information, and 2) facilitates SDM in clinical practice. Methods The International Patient Decision Aids Standards (IPDAS) development process model was complemented with a user-centred and convergent mixed-methods approach. Rapid prototyping was used to develop the PtDA with a multidisciplinary steering group in an iterative process of co-creation. The results of an exploratory evidence review and a needs-assessment among patients, caregivers, and clinicians were used to develop the PtDA. Seven Dutch teaching hospitals and two national Dutch outcome registries provided real-world data on selected outcomes for all kidney failure treatment modalities. Alpha and beta testing were performed to assess the prototype and finalise development. An implementation strategy was developed to guide implementation of the PtDA in clinical practice. Results The ‘Kidney Failure Decision Aid’ consists of three components designed to help patients and clinicians engage in SDM: 1) a paper hand-out sheet, 2) an interactive website, and 3) a personal summary sheet. A ‘patients-like-me’ infographic was developed to visualise survival probabilities for each treatment modality on the website. Other treatment outcomes were incorporated as event rates (e.g. hospitalisation rates) or explained in text (e.g. the flexibility of each treatment modality). No major revisions were needed after alpha and beta testing. During beta testing, some patients ignored the survival probabilities because they considered these too confronting. Nonetheless, patients agreed that every patient has the right to choose whether they want to view this information. Patients and clinicians believed that the PtDA would help patients make informed decisions, and that it would support values- and preferences-based decision-making. Implementation of the PtDA has started in October 2020. Conclusions The ‘Kidney Failure Decision Aid’ was designed to facilitate SDM in clinical practice and contains real-world outcome information on all kidney failure treatment modalities. It is currently being investigated for its effects on SDM in a clinical trial.
Objective: Breast cancer patients for whom less intensive surveillance is sufficient can be identified based on the risk for locoregional recurrences (LRRs). This study explores health care professionals' (HCPs) perspectives on less intensive surveillance, preferences for shared decision-making (SDM) about surveillance and perspectives on the use of patients' estimated personal risk for LRRs in decision-making about surveillance.Methods: We conducted semi-structured interviews with 21 HCPs providing followup care for breast cancer patients in seven Dutch teaching hospitals (Santeon hospitals).Results: HCPs were predominantly positive about less intensive surveillance for women with a low risk for recurrences. They mentioned important prerequisites such as clearly defined surveillance schedules based on risk categories, information provision and communication support for patients and HCPs. Most HCPs supported SDM about surveillance and were positive about using patients' estimated personal risk for LRRs. HCPs specified prerequisites such as clear visualisation and explanation of risk information, attention for fear of cancer recurrence (FCR) and defined surveillance schedules for specific risk groups. Conclusion:Mentioned prerequisites for less intensive surveillance need to be accounted for. Information needs and existing misconceptions need to be addressed.Outcome information regarding risks for LRRs and FCR can enrich the SDM process about surveillance.
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