Involving women in personalised decision‐making on mode of delivery after caesarean section: the development and pilot testing of a patient decision aid

Schoorel, Ellen; Vankan, Emy; Scheepers, Hubertina; Augustijn, Brigitte; Dirksen, Carmen D.; Koning, Maurits de; Kuijk, Sander M. J. van; Kwee, Anneke; Melman, Sonja; Nijhuis, Jan G.; Aardenburg, Robert; Boer, Karin; Hasaart, T. H. M.; Mol, Ben Willem J.; Nieuwenhuijze, Marianne; Pampus, Maria G. van; Roosmalen, Jos van; Roumen, Frans J.M.E.; Vries, Raymond De; Wouters, M.G.A.J.; Hermens, Rosella

doi:10.1111/1471-0528.12516

Cited by 29 publications

(32 citation statements)

References 27 publications

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“…Critical appraisal of the level of evidence of selected publications (fourth domain) resulted in how conclusively information was presented. The format of the value clarification worksheet (fifth domain) was based on a systematic review and the experience within our project group …”

Section: Resultsmentioning

confidence: 99%

“…They were asked to fill out a questionnaire on structure, content, layout, length, comprehensibility, relevance, credibility and usability of the patient decision aid that was (e)mailed to them. The questionnaire contained 21 questions, of which 13 were open‐ended, and was previously used in the development of another patient decision aid . Additionally, the decision aid was discussed during an individual audio‐recorded telephone interview to let them tell all their thoughts about content, wording and presentation to the interviewer.…”

Section: Methodsmentioning

confidence: 99%

“…The main difference with the questionnaire in the previous test round was a lower number of open‐ended questions. Again, the questionnaire was based on a questionnaire previously used . Participants who did not return their questionnaires were reminded three to six times by email and phone.…”

Section: Methodsmentioning

confidence: 99%

“…The questionnaire contained 21 questions, of which 13 were open-ended, and was previously used in the development of another patient decision aid. 25 Additionally, the decision aid was discussed during an individual audio-recorded telephone interview to let them tell all their thoughts about content, wording and presentation to the interviewer.…”

Section: Alpha Testing and Revisionmentioning

confidence: 99%

“…Again, the questionnaire was based on a questionnaire previously used. 25 Participants who did not return their questionnaires were reminded three to six times by email and phone. More attempts were found to be undesirable and unethical because it could be too disturbing and might prejudice the voluntary character of study participation.…”

Section: Alpha Testing and Revisionmentioning

confidence: 99%

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A patient decision aid for risk‐reducing surgery in premenopausal BRCA1/2 mutation carriers: Development process and pilot testing

Harmsen

Steenbeek

Hoogerbrugge

et al. 2017

Health Expectations

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Background BRCA1/2 mutation carriers’ choice between risk‐reducing salpingo‐oophorectomy (RRSO) and salpingectomy with delayed oophorectomy is very complex. Aim was to develop a patient decision aid that combines evidence with patient preferences to facilitate decision making.DesignSystematic development of a patient decision aid in an iterative process of prototype development, alpha testing by patients and clinicians and revisions using International Patient Decision Aid Standards (IPDAS) quality criteria. Information was based on the available literature and current guidelines. A multidisciplinary steering group supervised the process.Setting and participantsPre‐menopausal BRCA1/2 mutation carriers choosing between RRSO and salpingectomy with delayed oophorectomy in Family Cancer Clinics in the Netherlands.Main outcome measuresIPDAS quality criteria, relevance, usability, clarity.ResultsThe patient decision aid underwent four rounds of alpha testing and revisions. Finally, two paper decision aids were developed: one for BRCA1 and one for BRCA2. They both contained a general introduction, three chapters and a step‐by‐step plan containing a personal value clarification worksheet. During alpha testing, risk communication and information about premature menopause and hormone therapy were the most revised items. The patient decision aids fulfil 37 of 43 (86%) IPDAS criteria for content and development process.Discussion and conclusionsBoth BRCA1/2 mutation carriers and professionals are willing to use or offer the developed patient decision aids for risk‐reducing surgery. The patient decision aids have been found clear, balanced and comprehensible. Future testing among patients facing the decision should point out its effectiveness in improving decision making.

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Section: Resultsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Alpha Testing and Revisionmentioning

confidence: 99%

Section: Alpha Testing and Revisionmentioning

confidence: 99%

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A patient decision aid for risk‐reducing surgery in premenopausal BRCA1/2 mutation carriers: Development process and pilot testing

Harmsen

Steenbeek

Hoogerbrugge

et al. 2017

Health Expectations

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Preparing Data for Predictive Modelling

Kuijk

Dankers

Traverso

et al. 2018

Fundamentals of Clinical Data Science

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This is the first chapter of five that cover an introduction to developing and validating models for predicting outcomes for the individual patient. Such prediction models can be used for predicting the occurrence or recurrence of an event, or of the most likely value on a continuous outcome. We will mainly focus on the prediction of binary outcomes, such as the occurrence of a complication, recurrence of disease, the presence of metastases, remission, survival, etc. This chapter deals with the selection of an appropriate study design for a study on prediction, and on methods to manipulate the data before the statistical modelling can begin.

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