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Are health care providers adequately educating couples for embryo disposition decisions?

      Objective

      To determine the effectiveness of education provided by health care professionals during and after IVF treatment in preparing couples for surplus embryo disposition decisions.

      Design

      Cross-sectional survey.

      Setting

      University-affiliated fertility center.

      Patient(s)

      Couples with embryos cryopreserved for more than 2 years.

      Intervention(s)

      Self-administered questionnaire.

      Main Outcome Measure(s)

      A Likert scale was used to rate the response to questions about patients' preparedness to make decisions regarding their surplus embryos.

      Result(s)

      The survey response rate was 70% (131 of 187). Education provided by health care professionals before initiating treatment met the needs of the majority of participants (n = 86). After treatment, the education received was not adequate to assist couples in making embryo disposition decisions. Of the 127 respondents who provided feedback on their intention for their cryopreserved embryos, 37% (n = 47) had no intention of using cryopreserved embryos for their own reproduction, 24% (n = 30) intended to use embryos for procreation, and the remaining 39% (n = 50) remained undecided regarding their future use of their embryos. Participants with more than 3 years of infertility (n = 49) were most likely to feel conflicted about the decision after treatment.

      Conclusion(s)

      The education received after treatment was considered inadequate. Couples with a long duration of infertility and those conflicted about final embryo disposition may be appropriate targets for further intervention. More written information and/or counseling services after treatment may help patients make informed and timely decisions regarding their surplus embryos.

      Key Words

      Discuss: You can discuss this article with its authors and with other ASRM members at http://fertstertforum.com/denizs-education-embryo-disposition/
      One of the biggest paradoxes of successful IVF is that it often leaves patients with an unexpected and serious problem: what to do with their surplus embryos. Currently there is no Canadian national registry to ascertain the exact number of cryopreserved embryos in this country. The most recent population survey occurred in 2003, from which it was estimated that there were roughly 15,000 embryos stored in 13 clinics across the country (50% survey response rate) (
      • Baylis F.
      • Beagan B.
      • Johnston J.
      • Ram N.
      Cryopreserved Human embryos in Canada and their availability for research.
      ). Since 2003 the number of fertility clinics has almost tripled, and demand for fertility services has also dramatically increased. We can hypothesize that the number of cryopreserved embryos has doubled, if not tripled. Most stored embryos are cryopreserved with the intent of using them in subsequent IVF treatments by the couple who created them. As the success of IVF treatments improves and surplus embryos become more common, finding solutions to help patients make timely embryo disposition decisions is a continually growing challenge.
      Prolonged storage of cryopreserved embryos can create logistical and ethical dilemmas for patients and fertility clinics. It is estimated that approximately one-third of patients will not return to provide medical directives for their embryos (
      • Newton C.
      • Fisher J.
      • Feyles V.
      • Tekpetey F.
      • Hughes L.
      • Isacsson D.
      Changes in patient preferences in the disposal of cyropreserved embryos.
      ). Currently four options are available in Canada for surplus embryo disposition: ethical disposal/destruction; donation to research; donation for the purposes of teaching/training; and embryo donation to a third party (

      Government of Canada. Assisted Human Reproductive Act; Canadian Law 2004. Available at: www.laws-lois.justice.gc.ca/eng/acts/A-13.4/. Accessed February 19, 2015.

      ). The process of ethical disposal involves thawing embryos in conditions that allow the embryo to perish. Alternatively, patients may opt to have their embryos used for research that is in accordance with the regulations set by the Assisted Human Reproductive Act (

      Government of Canada. Assisted Human Reproductive Act; Canadian Law 2004. Available at: www.laws-lois.justice.gc.ca/eng/acts/A-13.4/. Accessed February 19, 2015.

      ). Embryos remain cryopreserved until a research initiative gains ethical approval, at which point the patient would be notified of the study details and invited to participate and consent to the specific research project. Donation for teaching/training initiatives allocates embryos to the education of embryologists, ensuring that technical skills meet standards to optimize patient care. Embryo donation transfers ownership of the embryo(s) to a third party while relinquishing the patient of any ongoing responsibility for the offspring. Many different structures of embryo donation programs exist that allow both parties to receive varying degrees of information about each other.
      The Assisted Human Reproduction Act of Canada (2007) stipulates that written patient consent is required before the creation or disposal of embryos (

      Government of Canada. Assisted Human Reproductive Act; Canadian Law 2004. Available at: www.laws-lois.justice.gc.ca/eng/acts/A-13.4/. Accessed February 19, 2015.

      ). Once fertility treatment is complete, many patients fail to return to provide directives for the disposition of their surplus embryos. Consequently, many embryos remain in storage indefinitely. Interventions that would assist patients in making informed decisions that respect their values would add to the quality of care and at the same time simplify the clinic's management of cryopreserved embryos and decrease the number of embryos in indefinite storage.
      Previous publications have focused on the decision-making process, as well as patients' attitudes toward various embryo disposition options, highlighting the conflicting and emotional nature of patient decisions around the disposition of supernumerary embryos (
      • Newton C.
      • Fisher J.
      • Feyles V.
      • Tekpetey F.
      • Hughes L.
      • Isacsson D.
      Changes in patient preferences in the disposal of cyropreserved embryos.
      ,

      Government of Canada. Assisted Human Reproductive Act; Canadian Law 2004. Available at: www.laws-lois.justice.gc.ca/eng/acts/A-13.4/. Accessed February 19, 2015.

      ,
      • Lyerly A.
      • Steinhauser K.
      • Namey E.
      • Tulsky J.
      • Cook-Deegan R.
      • Sugarman J.
      • et al.
      Factors that affect infertility patients' decisions about disposition of frozen embryos.
      ,
      • Nachtigall R.
      • MacDougall K.
      • Lee M.
      • Harrigton J.
      • Becker G.
      What do patients want? Expectations and perceptions of IVF clinic information and support regarding frozen embryo disposition.
      ). The present study's primary objective was to determine whether the education provided by the health care team before and after IVF treatment was adequate to prepare patients to make informed decisions regarding the subsequent disposition of their surplus embryos. Education involved physician-directed individual teaching regarding the disposition options, as well as psychosocial counseling provided by a physician, nurse, or psychiatrist.

      Materials and methods

      All couples had received some formal counseling regarding the potential for supernumery embryos before commencing an IVF treatment cycle. In addition to a 1-hour IVF group teaching session, couples were counseled individually; during both sessions, embryo disposition was addressed, and patients were encouraged to consider their wishes for the disposition of surplus embryos resulting from their treatment. This education included the provision of verbal information describing the available disposition options and answers to patients' questions regarding their options. The patient consent document for IVF treatment or any subsequent frozen embryo treatment specifically addressed the issue of disposition, asking patients to consider the available options and to indicate their preference.
      Couples with embryos stored for 2 years or longer at The Ontario Network of Experts in Fertility (ONE Fertility), Burlington, were contacted by telephone to discuss the nature of the study and were asked if they might be interested in participating. Embryo storage for 2 years or more was used as a cut-off to maximize sampling of patients who were actively contemplating embryo disposition.
      Participants were able to contact the primary investigator at any point by e-mail or telephone to request further information about the study before participation. Those agreeing to participate were sent an information package by e-mail/post or were interviewed in person by the primary investigator, to discuss the study. The information package included a description of the study, a personal identification number, and a link to an electronic survey. Personal identification numbers were used to track survey completion. All responses remained anonymous. Participants were given the option to respond to the survey independently or as a couple. The survey took 30 minutes to complete. Where necessary, participants were sent e-mail reminders once weekly for 3 weeks and a follow-up telephone call to improve response rate.
      The survey was developed and reviewed before use by a team of reproductive endocrinologists, an embryologist, and an epidemiologist, to ensure appropriateness of content and process. The survey consisted of 24 items, primarily closed-ended questions that included patients' age, relationship status, fertility treatment history, and evaluation of the education provided before and after fertility treatments, as well as the perceived barriers to the currently available disposition options. A Likert-type scale was used to rate the response to questions about patients' preparedness to make decisions regarding their surplus embryos, based on the education they received (not at all, somewhat informative, adequately informative, and extremely informative). To identify barriers that may contribute to the decision to continue embryo storage, patients were asked to select the descriptor(s) that best represent their perspective (
      • Lyerly A.
      • Steinhauser K.
      • Namey E.
      • Tulsky J.
      • Cook-Deegan R.
      • Sugarman J.
      • et al.
      Factors that affect infertility patients' decisions about disposition of frozen embryos.
      ,
      • Provoost V.
      • Pennings G.
      • De Sutter P.
      • Gerris J.
      • Van De Velde A.
      • De Lissnyder E.
      • et al.
      Infertility patients' beliefs about their embryos and their disposition preferences.
      ,
      • Lyerly A.
      • Steinhauser K.
      • Voils C.
      • Namey E.
      • Alexander C.
      • Bankowski B.
      • et al.
      Fertility patients' views about frozen embryo disposition: results of a multi-institutional U.S. survey.
      ,
      • Provoost V.
      • Pennings G.
      • De Sutter P.
      • Gerris J.
      • Van de Velde A.
      • Dhont A.
      To continue or discontinue storage of cryopreserved embryos? Patients' decisions in view of their child wish.
      ).
      This study received approval by the Hamilton Integrated Research and Ethics Board of McMaster University before initiation (protocol no. 14–495).
      We examined frequencies of responses for demographic characteristics, satisfaction with the education provided, and perceived barriers to embryo disposition decisions. Responses were subdivided into three categories; intention to use embryos for personal reproduction, undecided about future reproductive use, and participants who store embryos with no intention of further IVF treatments. Chi-squared tests and analysis of variance were used to determine whether these subgroups were significantly different. When numbers were small (n < 5), a Fisher exact test was used to compare groups.

      Results

      Three hundred sixty-eight couples met inclusion criteria. Excluded from the study were couples who were not able to read/write in English (n = 1), couples with outdated contact information (n = 60), and couples who did not respond to the clinic' request for communication (n = 118).
      Data were gathered between August 1, 2014 and December 31, 2014. One hundred eighty-seven couples were contacted for participation, and 131 surveys (70%) were completed. One hundred sixteen surveys were completed electronically (89%), and the remainder were completed in person with the primary investigator. Of the 131 surveys completed, 40 represented the views of couples and 91 represented either the male (n = 3) or female perspective (n = 88). In no circumstances did a couple choose to submit two surveys to represent each of their views. In total, the 131 survey responses represented the views of 43 men and 128 women. For the purpose of this analysis, the denominator for which all values are referenced is 131.
      The mean age of female and male participants was 38 and 40 years, respectively (SD 11 and 5 years, respectively). Of the one hundred eighteen survey respondents, 51% identified themselves as Caucasian (Table 1). Eighty-six percent reported some postsecondary education (n = 113). All but four of the respondents were in the same relationship as they were when the embryos were created. The average number of cryopreserved embryos in storage was four. Only five couples used donor gametes for creation of their embryos. Fifty-two couples reported between 1 and 3 years of fertility treatments, whereas 49 respondents had more than 3 years of treatment. The majority of couples had at least one child from a spontaneous pregnancy, assisted reproductive technology, or adoption (n = 126). The mean duration of embryo storage was approximately 5 years (Table 1).
      Table 1Characteristics of study participants.
      CharacteristicAll participants

      (n = 131)
      Female age (y), mean (range), SD39 (27–48), SD 11
      Male age (y), mean (range), SD40 (27–49), SD 5
       Ethnicity
       Caucasian67
       South Asian4
       Japanese1
       Black/African American1
       Middle Eastern1
       Hispanic1
       Did not specify56
      Live children, n (%) (includes spontaneous pregnancy, assisted reproductive technology, and adoption)127 (97)
      Months since embryos were cryopreserved, mean (SD)62 (29)
      No. of embryos cryopreserved, mean (SD)4.4 (2.9)
      Live birth resulting from last treatment cycle, n (%)113 (86)
      Live birth resulting from fresh IVF transfer, n (%)100 (76)
      Live birth resulting from frozen embryo transfer, n (%)30 (23)
      Live birth resulting from embryos created with couples own gametes, n (%)130 (99)
      Live birth resulting from donor gametes, n (%)6 (5)
      Spontaneous pregnancy, n (%)23 (18)
      Duration of infertility >3 y, n (%)49 (37)
      1 pregnancy loss, n (%)55 (42)
      >3 pregnancy losses, n (%)7 (5)
      Eighty-four respondents (64%) reported spending less than 1 hour contemplating their wishes for surplus embryos before initiating an IVF treatment cycle. Seventy-five (57%) reported the final decision regarding embryo disposition to be a challenge.
      Participants were asked to rate their perception of counseling and education received from health care professionals on a 4-point Likert scale. Eighty-six respondents (66%) found the education delivered before initiating treatment to be at least adequate to meet their needs. After the last treatment cycle, only 55 (42%) found the education provided by the clinic after treatment to be adequate or excellent.
      Participants were asked whether they found decisions regarding surplus embryos to be challenging. Participants who were conflicted over their embryo disposition decision were no more likely to have children (P=.62), use donor games (P=.64), or have a history of a pregnancy loss (P=.58). There was no association between the number of embryos (P=.54) or the length of time they remained cryopreserved (P=.08). Participants with more than 3 years of infertility were most likely to feel conflicted about the decision after treatment (P=.048).
      Fertility patients with cryopreserved embryos represent a diverse population. Despite their demographic similarity, the study participants were divided into at least three subgroups based on the wish for further procreation: participants who intend to use their embryos (Table 2); participants undecided about future use; and participants with no intention of further use but consciously request continued storage. Because 4 participants did not respond to this question, the dominator for this subanalysis is 127.
      Table 2Factors influencing embryo disposition decisions.
      ParameterAll participants

      (n = 131)
      No intention to use embryos for own procreation

      (n = 47)
      Undecided about further use

      (n = 50)
      Plan on using embryos for future procreation

      (n = 30)
      P Value
      Struggling with the decision of end disposition70 (53)25 (53)38 (76)8 (27)<.01
      Anticipated success of subsequent ET64 (49)18 (38)32 (63)16 (53).33
      Satisfaction with family size54 (41)35 (74)16 (32)1 (3)<.01
      Fear of regret47 (36)14 (30)27 (54)4 (13)<.01
      Financial constraints limiting future ET19 (15)6 (13)10 (20)2 (6).29
      Physical burden of treatment limiting future ETs13 (9)6 (13)6 (12)0.26
      Discordant wishes between partners in a relationship impacting future ET16 (12)1 (2)13 (26)1 (3)<.01
      Note: Values are presented as number (percentage). n = 4 did not declare wishes for embryos and are not included in subanalysis.

       Intention to Use Embryos for Procreation

      The first group includes couples or individuals (n = 30) who intend on continuing treatment with their embryos. Participants in this group were the most satisfied with the pre/post counseling and education provided (80% and 65.5%, respectively) (Table 3). Some participants intended to use all of their stored embryos, whereas others were not ready to retain or engage in the discussion. Compared with other subgroups, this population did not spend any longer discussing the issue before treatment. Participants in this group did not request any additional counseling or education.
      Table 3Effectiveness of education provided during IVF treatment.
      ParameterAll participants

      (n = 131)
      No intention to use embryos for own procreation

      (n = 47)
      Undecided about further use

      (n = 50)

      (49 responded to this question)
      Plan on using embryos for future procreation

      (n = 30)
      P Value
      Education provided before treatment was adequate or excellent86 (66)35 (74)28 (55)24 (80).06
      Education provided after treatment was adequate or excellent55 (42)25 (53)19 (39)20 (66).12
      <1 h contemplating embryo disposition before treatment81 (62)25 (53)34 (69)23 (76).04
      Note: Values are presented as number (percentage).

       Undecided About Further Use of Embryos for Procreation

      Participants who were undecided about future treatment (n = 50) are a complex population likely to benefit from additional counseling and education. Those undecided about future use were most likely to struggle with final embryo disposition (n = 38, P<.01). This group was most likely to list fear of regret as a significant factor influencing their decision-making ability (n = 27, P<.01). In addition, they were most likely to report discordant wishes between partners as an important factor impeding their decision (n = 13, P<.01). Twenty-eight were satisfied with the counseling before treatment, but only 19 felt the counseling was adequate after treatment.

       Patients Who Continue Storage Despite No Intention for Further Treatment

      The third group of patients (n = 47) is unique because they store embryos with no intention of using their surplus embryos for their own procreation. Forty-seven participants completed their family but continue to store embryos; the majority perceived the finality of the decision to be difficult (n = 25). Fourteen (30%) feared they would regret their decision in the future.
      Participants with no intention of using embryos (n = 47) were asked to identify their perceptions and barriers to the current available options and document any concerns not addressed by the survey. Twelve respondents felt a desire to help another family through embryo donation. The majority of participants expressed concern about who would be raising their genetic child/children (n = 25), and many felt a sense of responsibility regarding how the child/children would be raised (n = 19). The majority of participants felt a desire to help another family through research initiatives or teaching (n = 32 and n = 30, respectively) but voiced concern(s) regarding the type of scientific research (n = 20). Thirteen respondents reported that ethical disposal conflicted with their spiritual/religious beliefs (n = 28) (Table 4).
      Table 4Perceptions and barriers to disposition options in participants with no intention of using cryopreserved embryos for procreation (n = 47).
      Donation of embryos to another couple
       Desire to help another family12 (26)
       Sense of responsibility of how the child would be raised19 (40)
       Concern about who would raise potential offspring25 (53)
       Concern that the fertility journey would no longer be confidential3 (6)
       Concern that you could have a financial responsibility to the child6 (13)
       Conflicts with personal/spiritual or religious beliefs7 (15)
       Concern that your genetic children may one day meet16 (34)
      Donation to research
       Desire to help another family by expanding knowledge and techniques32 (68)
       Sense of responsibility to medical knowledge19 (40)
       Concern with the type of study the embryo would be used for22 (47)
       Concern that donation to research conflicts with your spiritual/religious beliefs9 (19)
      Donation to teaching
       Desire to help another family by expanding knowledge, techniques, and staff training30 (64)
       Sense of responsibility to medical knowledge22 (47)
       Concern that donation to teaching conflicts with your spiritual/religious beliefs7 (15)
      Ethical disposal of embryos
       Conflicts with religious or spiritual beliefs13 (28)
      Note: Values are presented as number (percentage).

      Discussion

      Previous research has concluded that embryos that remain cryopreserved after IVF carry great value for patients, as a symbol of hope for their future or a reminder of their journey (
      • Provoost V.
      • Pennings G.
      • De Sutter P.
      • Gerris J.
      • Van de Velde A.
      • Dhont A.
      To continue or discontinue storage of cryopreserved embryos? Patients' decisions in view of their child wish.
      ). Patients are often faced with an unanticipated and difficult decision regarding the disposition of surplus embryos (
      • Lyerly A.
      • Steinhauser K.
      • Voils C.
      • Namey E.
      • Alexander C.
      • Bankowski B.
      • et al.
      Fertility patients' views about frozen embryo disposition: results of a multi-institutional U.S. survey.
      ). Most patients in this situation are already content with their family composition, but for some, previous treatment failures or emotional and financial stresses impact their decision-making process (
      • Lyerly A.
      • Steinhauser K.
      • Namey E.
      • Tulsky J.
      • Cook-Deegan R.
      • Sugarman J.
      • et al.
      Factors that affect infertility patients' decisions about disposition of frozen embryos.
      ).
      Cryopreserved embryos may remain in storage for years, if not indefinitely, while couples contemplate their fate. Canada does not have legislation that limits the length of time an embryo may be cryopreserved (
      • Newton C.
      • Fisher J.
      • Feyles V.
      • Tekpetey F.
      • Hughes L.
      • Isacsson D.
      Changes in patient preferences in the disposal of cyropreserved embryos.
      ). The United Kingdom addresses the issue by having patients consent to storage limits at the onset of treatment (

      legislation.gov.uk. Human Fertilisation and Embryology Act 2008. Available at: www.legislation.gov.uk/ukpga/2008/22/section/15. Accessed March 12, 2015.

      ). The maximum storage time is set to 10 years, with exceptions for medical circumstances such as premature ovarian failure. Once the storage limit has been reached, patients' predeclared wishes are fulfilled. Storage limits are not based on medical necessity, because prolonged cryopreservation does not impact implantation, clinical pregnancy rates, or live birth rates. Storage limits are legally implemented to address economic and societal best interests and are enforced according to consent provided before treatment, and not on patient wishes at the time of disposal. Although this solution may help address the issues surrounding abandoned embryos, legal limits for embryo cryopreservation do not value patients' autonomy, a virtue at the forefront of medical care in Canada. We hypothesized that optimizing patient education and psychosocial supports may be a more patient-centered solution that will help empower patients to make more timely decisions.
      Several studies have evaluated the stress and emotional conflict that patients and couples experience when faced with discarding or donating surplus embryos (
      • Provoost V.
      • Pennings G.
      • De Sutter P.
      • Gerris J.
      • Van de Velde A.
      • Dhont A.
      To continue or discontinue storage of cryopreserved embryos? Patients' decisions in view of their child wish.
      ,
      • Newton C.
      • McDermid A.
      • Tekpetey F.
      • Tummon I.
      Embryo donation: attitudes towards donation procedure and factors predicting willingness to donate.
      ). Other qualitative studies have described patients' views regarding the available options and the thought process that guides decision making (
      • Lyerly A.
      • Steinhauser K.
      • Voils C.
      • Namey E.
      • Alexander C.
      • Bankowski B.
      • et al.
      Fertility patients' views about frozen embryo disposition: results of a multi-institutional U.S. survey.
      ,
      • Nachtigall R.
      • Becker G.
      • Friese C.
      • Bulter A.
      • Macdougall K.
      Parents' conceptualization of their frozen embryos complicates the disposition decision.
      ,
      • Nachtigall R.
      • Mac Dougall K.
      • Harrington J.
      • Duff J.
      • Lee M.
      • Becker G.
      How couples who have undergone in vitro fertilization decide what to do with surplus frozen embryos.
      ). Relatively few studies have evaluated the influence of health care professionals in facilitating patients' decision making. Fuscalado et al. (
      • Fuscalado G.
      • Russel S.
      • Gillam L.
      How to facilitate decisions about surplus embryos: patients' views.
      ) conducted qualitative interviews on an Australian population with cryopreserved embryos and concluded that patients could benefit from more detailed information about the available options, as well as the ability to talk to other patients in a similar situation. Nachtigall et al. (
      • Nachtigall R.
      • MacDougall K.
      • Lee M.
      • Harrigton J.
      • Becker G.
      What do patients want? Expectations and perceptions of IVF clinic information and support regarding frozen embryo disposition.
      ) conducted a multicenter, US-based study interviewing families with embryos stored for at least 6 years. They concluded that patients perceived their health care team as the primary source of information and felt that clinics were under an obligation to help them make this difficult decision. Patients voiced a wide spectrum of preferences for the route, timing, and content of the information provided.
      In the present study we addressed the role of education provided by health care professionals in improving the decision-making process for surplus embryos while clarifying the most opportune time for intervention in a Canadian population. The majority of patient education regarding the disposition of surplus embryo occurs before initiating IVF treatment. Several studies have questioned the timing of education because many patients, including those in our study, report that they retained very little information when their focus was on procreation (
      • Lyerly A.
      • Steinhauser K.
      • Namey E.
      • Tulsky J.
      • Cook-Deegan R.
      • Sugarman J.
      • et al.
      Factors that affect infertility patients' decisions about disposition of frozen embryos.
      ). The fact that the majority of patients within our study spent less than 1 hour contemplating the decision before starting treatment further supports this concern. Once treatment is complete, contact with patients to provide further education and counseling is difficult because face-to-face contact is limited. Participants most conflicted about embryo disposition were either undecided about future embryo use or had stored embryos without an intention for future use. We hypothesized that financial considerations would be a significant contributor to participants' hesitation to make a decision, especially for patients undecided about future treatment, because IVF is not currently covered under Canada's universal health care. Surprisingly, neither financial constraints nor the physical burden of IVF were significant contributors in any of the groups. The only aspect of a patients' fertility history that correlated with difficulty reaching a final disposition decision was a duration of infertility >3 years. Further studies are needed to evaluate whether couples with a long duration of infertility would benefit from increased psychosocial counseling and education, as well as defining the most opportune time for its delivery.
      Participants were asked to identify any perceptions and/or barriers to the current available options for embryo disposition. We postulated that some of the barriers perceived by participants could be addressed through educational initiatives and psychosocial counseling. Many participants had a desire to use their surplus embryos for an altruistic cause, such as donation to another couple or donation to research/teaching. Respondents frequently noted that they were unaware of the process for embryo donation and their ongoing responsibility to the offspring. Participants were not aware of how research initiatives were chosen and the amount of information on the study they would receive. Several participants indicated that they were unclear about the actual process of ethical disposal. For our patients, these uncertainties represented a large barrier to selecting a disposition option. It is important to note that some barriers, such as a sense responsibility for how the child would be raised, could not easily be remedied by improved education. Further research is needed to evaluate whether providing patients with more detailed descriptions of embryo disposition options would help improve the decision making process.
      This study has limitations. The survey was addressed to the couple with the intent that it would represent the views of our male and female patient population. The majority of opinions expressed were female, potentially introducing a gender bias. Relatively few participants used donor gametes for the creation of their embryos. Consequently, it is difficult to extrapolate with any certainty the results of these participants to the population of patients that use donor gametes.
      There was a subgroup composed of patients who have lost contact with the clinic, who were not analyzed as part of the study. They represent a subgroup of patients that have moved homes and failed to notify the clinic of their new address or simply do not reciprocate contact with the clinic. There were 60 couples within our study that did not have updated contact information (16.3%), despite continuous efforts by the administrative team to keep records up to date. It is difficult to ascertain why these couples abandoned their embryos and whether educational initiatives could prevent or decrease its occurrence in the future.
      Currently IVF is not covered under Canada's universal health care. The population that our center serves is economically homogenous and reflects the population that currently has access to fertility services in Canada. If the model for funding IVF were to change, the results may not be generalized across different populations that will gain access to fertility services.
      In conclusion, embryo disposition is a difficult and complex decision for patients. Abandoned embryos and indefinite embryo storage pose ethical, logistical, and financial challenges for IVF clinics and laboratories. This study evaluated patients' perception of the adequacy of education provided by health care professionals in assisting patients' decision making regarding surplus embryos. Most participants reported that the education received before treatment was adequate but that information received after treatment was insufficient. Participants most likely to be conflicted were those with a long duration of infertility. Participants who were conflicted about disposition requested more information regarding the processes involved in the handling of embryos specific to each disposition option. Further education in the form of comprehensive and detailed information regarding disposition options after treatment and periodically thereafter may engage patients to make a timely and informed decision. Psychosocial counseling services should be available at the time of active treatment as well as the years after treatment to aid in decision making. Further research is needed to identify the most appropriate modality to deliver effective education, to improve patient satisfaction and decrease the occurrence of prolonged embryo cryopreservation and embryo abandonment.

      Acknowledgments

      The authors thank the families who participated in the study; Dr. Deidre DeJean, Ph.D., Department of Clinical Epidemiology and Biostatistics, McMaster University, for her assistance in questionnaire and methodology development; James Bowen, B.Sc.Phm., M.Sc., Department of Clinical Epidemiology and Biostatistics, McMaster University, for his assistance in statistical analysis; and Stacey Boterill for contacting patients to request their participation in this research initiative.

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