P-359 Patients’ experiences with elective egg freezing (EEF) consent processes: best practices and recommendations for improving informed consent

Abstract

Study question What are the consent processes for patients undergoing EEF at Canadian fertility clinics, and do these patients feel adequately informed through existing consent processes? Summary answer EEF consent processes rely on an unstandardized patchwork of sources. 18 EEF patients felt adequately informed; all patients thought that consent processes could be improved. What is known already The use of EEF is on the rise. Scholars have argued that the aggressive marketing of EEF, along with the fact that it is not medically necessary, necessitates a heightened standard for informed consent. In particular, scholars have argued that EEF patients need clear honest information that not only makes success rates clear but also provides patients with essential information about risks, costs, and options for the future uses of genetic material. Despite this, little to no research has evaluated EEF consent processes and EEF patients’ perceptions of these processes. This study sought to fill this gap. Study design, size, duration This study comprised of: (1) qualitative semi-structured interviews (average 37 minutes) with 27 participants, over the age of 18, who had undergone at least one cycle of EEF at a Canadian fertility clinic. Interviews occurred between April 2023 and September 2024. (2) Consent materials were collected from 11 Canadian fertility clinics. In February 2024 all Canadian fertility clinics were contacted by email with a request for samples of consent forms and accompanying materials. Participants/materials, setting, methods Average participant age, at time of freezing eggs, was 35 (range: 21-40). Interviews took place over Zoom and were recorded, transcribed and analyzed through NVivo. Consent materials came from clinics across Canada. In addition to the 11 consent forms, accompanying materials included information packages, brochures, online materials, and videos. All consent materials were analyzed by the principal investigator and a research assistant according to seven elements of ethical standards of disclosure. Main results and the role of chance Consent processes vary significantly from clinic to clinic and rely on an unstandardized patchwork of materials. Some consent materials are very thorough, but most did not adhere to minimum standards of disclosure. There were 8 areas that were recurringly mentioned by participants (5+) as areas where they did not feel as though they were given adequate information. These were: (1) administration of hormone injections, (2) logistics of the egg retrieval, (3) subsequent procedures to use frozen eggs (e.g. IVF), (4) emotional risks and inconveniences, (5) egg storage (cost and location) (6) success rates at the clinic where they pursued EEF, (7) options for any unused eggs, and (8) possibility to freeze embryos. In terms of how information was given, best practices noted by participants included: thorough meeting with the physician, opportunity to ask questions after initial meeting, inclusion of explanatory videos, online platforms, tutorials with a nurse, and complimentary fertility counseling. Problems with delivery of information for consent were: feeling rushed, no time to ask questions, questions unanswered, “barebones overview” of steps, and explanation (rather than demonstration) for hormonal injections. Limitations, reasons for caution Findings may be limited by the smaller sample size. Additionally, these findings stem from Canada and usefulness to other jurisdictions may be impacted, to some extent, by local laws, regulations, and guidelines pertaining to healthcare consent processes. Wider implications of the findings This study provides insight into what information EEF patients are seeking, i.e. what information EEF patients need to have given informed consent. It illustrates best practices for EEF consent processes and provides recommendations on how to optimize these processes to ensure informed consent. Trial registration number No