ABSTRACT
PURPOSE: To visualize contraceptive choice pathways among adolescent and young adults (AYA) designated female at birth (DFAB) as a means of exploring the relationships between current contraceptive use, desired contraceptive, and ultimately, chosen contraceptive method. METHODS: A retrospective cross-sectional study was conducted of AYA DFAB (N=2369), aged 14-24 years, presenting for initial visit at a contraceptive clinic with standardized efficacy-based counseling. Sankey diagrams were utilized to visualize patient flow through the contraceptive decision-making process. Outcomes of interest were current contraceptive method, desired contraceptive prior to contraceptive counseling, and then chosen contraception. Chi-Square tests were conducted to quantify the strength of the relationships identified by the Sankey diagrams. RESULTS: Sankey diagrams demonstrated a fair amount of change from current contraceptive to desired contraceptive and from current contraceptive to chosen contraceptive. A stronger relationship was evident between desired contraceptive method and chosen method; most patients did not change their desired contraceptive after receiving counseling except AYA who were undecided about their desired contraceptive who flowed variably into all available methods. Chi-Square test assessing the association between desired and chosen contraceptive method was significant at p-value <0.001, validating the patterns identified with the Sankey diagrams. DISCUSSION: We identified distinct contraceptive decision-making pathways among AYA which could inform the framework for a more tailored counseling approach. These findings are aligned with national medical organizations' recommendations for provision of non-coercive, patient-centered contraceptive counseling to promote adolescent reproductive autonomy.
ABSTRACT
AIM: An international Clinical Outcomes Group consisting of clinicians, scientists, patient advocacy groups, and industries identified a need for a scale to measure motor performance of the upper limb. We report the steps leading to the development of the Performance of the Upper Limb (PUL), a tool specifically designed for assessing upper limb function in ambulant and non-ambulant patients with Duchenne muscular dystrophy (DMD). METHOD: The development of the PUL followed a number of steps, from the systematic review and a preliminary study exploring the suitability of the existing measures, to the application of a pilot version in a multicentric setting, with Rasch analysis of the preliminary results, leading to a revised pro forma. RESULTS: The PUL was specifically designed for DMD, with a conceptual framework reflecting the progression of weakness and natural history of functional decline in DMD. Modern psychometric methods were used to create a scale with robust internal reliability, validity, and hierarchical scalability; males with DMD and their families were involved iteratively throughout the process of the clinician-reported outcome assessment tool development to establish clinical meaningfulness and relevance of individual PUL items to activities of daily living. INTERPRETATION: The module was developed using innovative approaches and will be useful for designing clinical trials.
