Effectiveness and implementation of SHared decision-making supported by OUTcome information among patients with breast cancer, stroke and advanced kidney disease: SHOUT study protocol of multiple interrupted time series

Hackert, Mariska Q.N.; Ankersmid, Jet W.; Engels, Noel; Prick, Janine; Teerenstra, Steven; Siesling, Sabine; Drossaert, Constance H.C.; Strobbe, Luc J. A.; Riet, Yvonne E A van; Dorpel, René M A van den; Bos, Willem Jan W; Nat, P. B. van der; Berg-Vos, Renske M. van den; Schaik, Sander M. Van; Garvelink, Mirjam M.; Wees, Philip J. van der; Uden–Kraan, Cornelia F. van

doi:10.1136/bmjopen-2021-055324

Cited by 10 publications

(10 citation statements)

References 42 publications

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“…For example, an item asking “I feel that taking action to lower my chance of getting bowel cancer is very important/slightly important/not important to me” was seen as inappropriate because it implies that someone at increased risk of cancer might not care about reducing their risk, and does not acknowledge that some people may not be able to take action due to other factors, such as age or co-morbidities. Therefore the identification of values to include in the values-based activity was directly informed by the issues raised when talking about the different options during our public involvement consultations, to ensure they were relevant to our specific population ( 36 ) (See Box 4 ).…”

Section: Resultsmentioning

confidence: 99%

Person-based co-design of a decision aid template for people with a genetic predisposition to cancer

Morton

Kohut²,

Turner³

et al. 2022

Front. Digit. Health

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BackgroundPeople with genetic predispositions to cancer are faced with complex health decisions about managing their risk. Decision aids can support informed, values-based decisions, alongside shared decision-making with a clinician. Whilst diagnoses of genetic predispositions to cancer are increasing, there is no scalable decision aid to support these people. This paper presents an accessible, relevant decision aid template which can be adapted for different predispositions to cancer.MethodsThe decision aid template was co-developed with 12 patients affected by cancer and informed by empirical and theoretical literature. In addition, consultations were conducted with a further 19 people with Lynch syndrome; a specific genetic predisposition to cancer. Clinical stakeholders were consulted regularly. Coulter's framework for decision aid development guided the process, and these activities were complemented by the International Patient Decision Aid Standards, and the latest evidence on communicating risk in decision aids. Programme theory was developed to hypothesise how the decision aid would support decision-making and contextual factors which could influence the process. Guiding principles co-developed with the patient panel described how the decision aid could effectively engage people.ResultsThe in-depth co-design process led to the identification of five core components of an accessible decision aid template for people with a genetic predisposition to cancer: defining the decision; option grid showing implications of each option; optional further details such as icon arrays to show tailored risk and personal narratives; values clarification activity; and a summary to facilitate discussion with a clinician. Specific guidance was produced describing how to develop each component. The guiding principles identified that the decision aid template needed to promote trust, reduce distress, and be comprehensive, personally relevant and accessible in order to engage people.ConclusionAdopting a co-design process helped ensure that the decision aid components were relevant and accessible to the target population. The template could have widespread application through being adapted for different genetic predispositions. The exact content should be co-designed with people from diverse backgrounds with lived experience of the specific predisposition to ensure it is as useful, engaging and relevant as possible.

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Section: Resultsmentioning

confidence: 99%

Person-based co-design of a decision aid template for people with a genetic predisposition to cancer

Morton

Kohut²,

Turner³

et al. 2022

Front. Digit. Health

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“…The beta testing (field testing) of the “Breast Cancer Surveillance Decision Aid” is currently ongoing within the SHOUT-BC trial [ 32 ].…”

Section: Resultsmentioning

confidence: 99%

“…In conclusion, we developed an acceptable and usable PtDA to support SDM for personalized posttreatment 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 [32]. ©Jet Wies Ankersmid, Sabine Siesling, Luc J A Strobbe, Johanna M Meulepas, Yvonne E A van Riet, Noel Engels, Janine C M Prick, Regina The, Asako Takahashi, Mirjam Velting, Cornelia F van Uden-Kraan, Constance H C Drossaert.…”

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

“…The secondary outcomes include observed SDM, decisional conflict and regret, fear of recurrence, risk perception, disease perception, and quality of life. More details on the SHOUT-BC trial can be found in the published study protocol [ 32 ].…”

Section: Methodsmentioning

confidence: 99%

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Supporting Shared Decision-making About Surveillance After Breast Cancer With Personalized Recurrence Risk Calculations: Development of a Patient Decision Aid Using the International Patient Decision AIDS Standards Development Process in Combination With a Mixed Methods Design

Ankersmid¹,

Siesling²,

Strobbe³

et al. 2022

JMIR Cancer

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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.

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Surgically-relevant quality of life thresholds for the Short Inflammatory Bowel Disease Questionnaire in Crohn’s disease

Ueland,

Horst,

Shroder

et al. 2024

Journal of Gastrointestinal Surgery

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Effectiveness and implementation of SHared decision-making supported by OUTcome information among patients with breast cancer, stroke and advanced kidney disease: SHOUT study protocol of multiple interrupted time series

Cited by 10 publications

References 42 publications

Person-based co-design of a decision aid template for people with a genetic predisposition to cancer

Person-based co-design of a decision aid template for people with a genetic predisposition to cancer

Supporting Shared Decision-making About Surveillance After Breast Cancer With Personalized Recurrence Risk Calculations: Development of a Patient Decision Aid Using the International Patient Decision AIDS Standards Development Process in Combination With a Mixed Methods Design

Surgically-relevant quality of life thresholds for the Short Inflammatory Bowel Disease Questionnaire in Crohn’s disease

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