Making Research Accessible

We are strongly committed both to conducting research of social import and to making our research findings available to the people who are most affected, as well as other researchers and professionals. On this page you will find some of our "open access" publications in peer-reviewed scientific journals, as well as as yet unpublished presentations, data, and preliminary findings. On our "Resources" page you will also find short documentary-style videos, articles published online or in popular presses, and other resources, blogs and articles related to donor conception, modern family creation, and fertility options. We update this page regularly as new publications come out.

Publications

Reproductive Biomedicine and Society Online

Alignment between expectations and experiences of egg donors: what does it mean to be informed?

This study evaluated the retrospective perceptions of egg donors regarding information communicated about immediate and long-term risks during the process of becoming an egg donor, and the alignment of that perception with their experiences and expectations of egg donation. Data were collected using an anonymous online survey. Egg donors’ demographics, perceptions of being informed about immediate complications and long-term risks, and alignment between their expectations and experiences were analysed. In total, 375 current and former egg donors participated in an online survey about their decisions and experiences. Participants ranged in age from 18 to 57 years, with a median age of 24 years at first donation for compensated donors. The majority of the participants (81%) provided eggs in the USA, and 86.1% reported being compensated beyond direct reimbursement. Overall, 66% of egg donors surveyed reported feeling that their experiences matched their expectations based upon what they had been told during the informed consent process. While most participants (64.8%) felt well informed about potential short-term risks, 55.2% did not feel well informed about potential long-term risks. The findings indicate that while the majority of egg donors felt informed about immediate complications, there are gaps in knowledge about potential long-term risks. Results from this research provide insight into how egg donors understand risks and benefits, and can be used to improve counseling and informed consent forms and processes. The findings also indicate that longitudinal research on the health and well-being of egg donors is needed in order to improve informed consent.

 

Citation:

Tober, Diane, C. Garibaldi, A. Blair, K. Baltzell. 2020. In Reproductive Biomedicine and Society Online. Alignment between expectations and experiences of egg donors: what does it mean to be informed? Volume 12, P1-13, March 01, 2021. Open Access, Published:September 18, 2020 DOI: https://doi.org/10.1016/j.rbms.2020.08.003

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Abstracts and Posters

Fertility and Sterility

Conference Abstract #1

Frequency and severity of ovarian hyperstimulation syndrome (OHSS) among oocyte donors by trigger type and number of oocytes retrieved.

Objective

To better understand the frequency and severity of OHSS in a population of paid oocyte donors.

 

Design

Survey

Materials and Methods

US egg donors (n=289) undergoing 801 oocyte donation cycles a few months to 27 years earlier (=4.8 years, median 2, interquartile range 1-6) were surveyed regarding egg number per retrieval, trigger type (hCG, Lupron, or combined (Dual)), and severity of OHSS. ANOVA or Kendall’s test for significant association were used as appropriate.

Results

Lupron triggers (n=337) had milder OHSS (23.7% moderate, 2.7% severe, no critical) compared to hCG (n=253, 29.6% moderate, 9.9% severe, 0.8% critical, p=0.022) or Dual (n=211, 37.4% moderate, 7.1% severe, 0.9% critical, p<0.0001) triggers. Fewer eggs (=24) were retrieved with hCG trigger vs Lupron or Dual triggers (=28 for both, p=0.0004). Adjusting for smaller hCG trigger cohort size (Table), severe OHSS was most common after hCG trigger (10-12% w/10-39 eggs, 19% w/40+ eggs) and lower following dual trigger (5-7% w/10-49 eggs, 14% w/+40+ eggs). OHSS was much milder with Lupron trigger, with more than two-thirds of retrievals of fewer than 50 eggs reporting only mild or no OHSS, and severe OHSS ranging from 1% with 10-29 eggs to 4-9% with 30+ eggs.

 

Conclusions

Among high-responding egg donors at risk of OHSS, Lupron trigger results in much milder cases of OHSS compared to triggers that include hCG, but does not completely eliminate risk for the condition. Risk for moderate to severe OHSS appears to increase according to number of eggs produced. There were no reports of severe OHSS on cycles in which donors reported producing 10 eggs or fewer.

Citation:

Abstract only, Volume 114, ISSUE 3, SUPPLEMENT , e463, September 01, 2020

FREQUENCY AND SEVERITY OF OVARIAN HYPERSTIMULATION SYNDROME (OHSS) AMONG OOCYTE DONORS ACCORDING TO TRIGGER TYPE AND NUMBER OF OOCYTES RETRIEVED

Diane Tober, PhD, Kevin S. Richter, PhD, Cristina Garibaldi, MS, Kezia Mostak, MSShannon Kokjohn, MSc, Raquel Cool, BA, Dougie Zubizarreta, BA, Natalia Villegas, BS, Katarina Cook, BS, Said Daneshmand, MD

DOI:https://doi.org/10.1016/j.fertnstert.2020.08.1332

Take home message:

 

The most common complication associated with undergoing ovarian stimulation is Ovarian Hyperstimulation Syndrome (OHSS). The good news is that OHSS is largely preventable. The poster below demonstrates how medication protocols and quantity of eggs produced may be associated with OHSS risk.

Fertility and Sterility

Conference Abstract #2

Egg donor perceptions of long-term adverse outcomes.

Objective

To examine egg donor self reports of perceived long-term adverse outcomes in relation to number of donation cycles and eggs produced per cycle

 

Design

Survey

Materials and Methods

Oocyte donors (n=243) in the US were surveyed a year or more after their last oocyte donation regarding potential long-term risks associated with repeated oocyte donations. Potential risks evaluated included menstrual irregularities, hormonal irregularities, endometriosis, polycystic ovary syndrome (PCOS), reproductive cancer, and post-donation infertility. The mean number of donation cycles per donor was compared between egg donors reporting the occurrence, or not, for each potential risk and evaluated by t-test.

Results

Past oocyte donors completed the survey from one to as many as 27 years (mean = 7.2, SD = 6.6, median = 4, interquartile range = 2 to 10) following their last oocyte donation cycle. Mean number of donation cycles and mean number of eggs retrieved per donation cycle did not differ significantly between those experiencing vs those not for each of the potential risks evaluated (Table).

 

Conclusions

Perceived experiences long-term adverse effects were higher than anticipated, but reports of long-term effects do not appear to be related to number of cycles or number of eggs produced per cycle.

Citation:

Abstract only| Volume 114, ISSUE 3, SUPPLEMENT , e278-e279, September 01, 2020

 

EGG DONOR PERCEPTIONS OF LONG-TERM ADVERSE OUTCOMES

Diane Tober, PhD, Kevin S. Richter, PhD, Cristina Garibaldi, MS, Kezia Mostak, MS, Natalia Villegas, BS, Dougie Zubizarreta, BA, Raquel Cool, BA, Katarina Cook, BS, Shannon Kokjohn, MSc, Said Daneshmand, MD

DOI:https://doi.org/10.1016/j.fertnstert.2020.08.772

Take home message:

One of the biggest unknowns regarding egg donation is whether or not the egg donation process has an impact on long-term reproductive health and, if so, how? This poster draws from 243 egg donor survey responses to examine egg donors' self reports of health conditions a year or more after their last donation cycle. While we cannot yet determine if former egg donors experience adverse reproductive health conditions more than the general population, our findings indicate that some egg donors who report health problems perceive these conditions as connected to having donated eggs. More prospective, longitudinal research is needed to determine if controlled ovarian stimulation has any long-term impacts on health.

Fertility and Sterility

Conference Abstract #3

Subjective psychological factors associated with egg donors undergoing additional donations after their first donation cycle

Objective

To determine psychological factors that influence egg donors' decisions to undergo repeat donation cycles.

 

Design

Survey

Materials and Methods

Egg donors were more likely to donate oocytes again if they considered their first experience with donation to be rewarding, if their expectations regarding egg donation were met, if potential short-term and long-term risks of donation were adequately explained by their clinic before treatment, and if they were satisfied with their clinic (Table). Donors who reported feeling regret (53.5% vs 84.8, p<0.0001, C2), fear or anxiety (63.2% vs 87.9%, <0.0001, C2), depression (61.4 vs 85.9%, <0.0001, C2), or mood swings (68.3 vs 84.7%, p=0.0012, C2) during or after their first donation were significantly less likely to undergo a second oocyte donation.

Proportion of egg donors choosing to do additional oocyte donations after their first donation, according to their subjective experiences of their first donation rated on a Likert scale, assessed using Kendall’s test for significant association.

Results

Past oocyte donors completed the survey from one to as many as 27 years (mean = 7.2, SD = 6.6, median = 4, interquartile range = 2 to 10) following their last oocyte donation cycle. Mean number of donation cycles and mean number of eggs retrieved per donation cycle did not differ significantly between those experiencing vs those not for each of the potential risks evaluated (Table).

 

Conclusions

Oocyte donors reporting comprehensive informed consent and high satisfaction with patient care were more likely to donate again.

Citation:

Abstract only| Volume 114, ISSUE 3, SUPPLEMENT , e276, September 01, 2020

PDF [89 KB]

SUBJECTIVE PSYCHOLOGICAL FACTORS ASSOCIATED WITH EGG DONORS UNDERGOING ADDITIONAL DONATIONS AFTER THEIR FIRST OOCYTE DONOR CYCLE. Diane Tober, PhD, Kevin S. Richter, PhD, Shannon Kokjohn, MSc, Dougie Zubizarreta, BA, Katarina Cook, BS, Said Daneshmand, MD

DOI:https://doi.org/10.1016/j.fertnstert.2020.08.765

Take home message:

 

In this study, over 80% of egg donors underwent more than one donation cycle. Donors who decided to undergo repeat donation reported feeling well-informed about potential short and long-term risks, higher levels of satisfaction with clinical care, and an overall sense that egg donation was a rewarding experience.

Fertility and Sterility

Conference Abstract #4

Clinical factors associated with egg donors undergoing additional oocyte donations after their first cycle

Objective

To examine how experiences of adverse effects related to oocyte donation affect egg donors’ decisions to donate again.

 

Design

Survey

Materials and Methods

Oocyte donors (n=318) in the US were surveyed regarding adverse clinical events associated with their first donation, and the subsequent probability that they undergo additional donations after their first. Donors providing eggs to a friend or relative were excluded.

Results

Patient-reported severity of ovarian hyperstimulation syndrome (OHSS) experienced during egg donors' first oocyte donation cycle was significantly associated with the frequency of donors opting to undergo additional donor cycles after their first. The proportion of egg donors choosing to undergo additional donations declined with increasing severity of OHSS in their first donor cycle; 89.1% for no OHSS (n=64), 83.8% for mild OHSS (n=142), 73.2% for moderated OHSS (n=82), and 66.7% for severe OHSS (n=30) (p=0.0015, Kendall’s test for significant association). Donors reporting migraine/headaches, missed work due to complications associated with their donation, insufficient anesthesia during oocyte retrieval, or surgical complications during their first donation were all significantly less likely to undergo a second donation (Table).

 

Conclusions

Experiences of adverse effects related to oocyte donation reduce the likelihood that an egg donor will donate again. The lowest frequency of second donations was observed among egg donors who experienced surgical complications or who reported insufficient anesthesia during the oocyte retrieval, both of which were associated with a repeat donation rate of 50% or less.

Citation:

Abstract only| Volume 114, ISSUE 3, SUPPLEMENT , e270, September 01, 2020

PDF [90 KB]

CLINICAL FACTORS ASSOCIATED WITH EGG DONORS UNDERGOING ADDITIONAL OOCYTE DONATIONS AFTER THEIR FIRST DONOR CYCLE. Diane Tober, PhD, Kevin S. Richter, PhD, Shannon Kokjohn, MSc, Natalia Villegas, BS, Katarina Cook, BS, Raquel Cool, BA, Kezia Mostak, MS, Cristina Garibaldi, MS, Cris Zubizarreta, BA, Said Daneshmand, MD

DOI:https://doi.org/10.1016/j.fertnstert.2020.08.751

 

Take home message: In this study, over 80% of egg donors underwent more than one donation cycle. Donors who decided to donate again after their first cycle were more likely to have positive experiences donating eggs, while those who stopped after their first cycle were more likely to have experienced immediate adverse effects.

Fertility and Sterility

Conference Abstract #5

Pre-treatment predictors of egg donors who will undergo additional oocyte donations after their first

Objective

To assess corresponding factors on probability an oocyte donor will undergo additional donations after their first donation.

 

Design

Survey

Materials and Methods

Oocyte donors (n=318) in the US were surveyed regarding pre-donation characteristics, and the probability that they undergo additional donations after their first. Donors providing eggs to a friend or relative were excluded.

Results

The frequency of second cycles after a first donation declined from 89% among women aged 18 to 22 years to 56% among women aged 30 to 36 years. The frequency of second cycles after a first donation declined from 91% among women with a high school, GED, or vocational education to 70% among women with a post-graduate degree (Master’s or Ph.D.). Reported income and degree to which they were financially motivated to donate were not related to repeat donation. However, donors who were paid more were more likely to undergo multiple donations. Reported prior psychological conditions including anxiety, depression, and mood swings were unrelated to the frequency of repeat donation. Probability of donors undergoing a second cycle after their first oocyte donation according to age, academic education level, and monetary compensation, assessed using Kendall's test for significant association.

Conclusions

Higher monetary compensation was correlated with decisions to undergo repeat donation cycles.

Citation:

Abstract only| Volume 114, ISSUE 3, SUPPLEMENT , e279, September 01, 2020

PDF [93 KB]

PRE-TREATMENT PREDICTORS OF EGG DONORS WHO WILL UNDERGO ADDITIONAL OOCYTE DONATIONS AFTER THEIR FIRST. Diane Tober, PhD, Kevin S. Richter, PhD, Shannon Kokjohn, MSc, Natalia Villegas, BS, Dougie Zubizarreta, BA, Cristina Garibaldi, MS, Kezia Mostak, MS, Katarina Cook, BS, Raquel Cool, B, Said Daneshmand, MD

DOI:https://doi.org/10.1016/j.fertnstert.2020.08.773

Take home message: In this poster we examine how age at time of first donation, education and compensation are associated with decisions to undergo repeat donation. Donors who are older at first donation are less likely to donate again than younger donors. Increased financial compensation also influences donors' decisions to donate again.

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