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Menstrual suppression allows for the management of common symptoms associated with menses. For patients with developmental and/or physical disabilities, several factors must be considered such as the patient's independence in activities of daily living, symptoms, comorbidities, polypharmacy, and ability to participate in informed consent. Given the choice for menstrual suppression is often value driven, Pediatric and Adolescent Gynaecologists are obligated to provide balanced, comprehensive counselling. Using a quality improvement approach, we aim to develop and evaluate the effectiveness of a decision aid for menstrual suppression in providing education, assisting in decision-making and increasing patient and family satisfaction.
This is a project in progress. We used the International Patient Decision Aid Standards to develop and evaluate the patient decision aid. A paper prototype was drafted after review and synthesis of the literature regarding menstrual suppression. Next, the tool was critically reviewed by study authors for usability and actionability using the Patient Education Material Assessment Tool (PEMAT). Feedback was elicited from a multidisciplinary team to review content and flow using a 5-point Likert Scale (1 = strongly disagree to 5 = strongly agree). With each iteration of feedback, the tool was revised. Next steps involve sharing with families and collecting feedback about usefulness and satisfaction. Balance measures, including time spent reviewing the tool by families and care providers, will be assessed.
To date, healthcare providers and ethicists have rated the usability and actionability of our tool highly according to the PEMAT. Care providers agreed the tool will be helpful for families (4.2/5), is easy to understand (4/5), accurately represents care (4/5) and provides valuable information (4.2/5). Care providers commented that the tool provides a comprehensive, non-judgmental overview of menstrual suppression. Suggestions for improvement include increasing the interactivity of the tool, generating a summary of results for families, and improving the flow of the online tool.
We demonstrate the development of a menstrual suppression decision aid, using a quality improvement process. Our experience highlights the feasibility of creating decision aids in the field of pediatric and adolescent gynaecology.
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