emPoWeR Unit

​Introduction
In the intricate world of In Vitro Fertilisation (IVF), the inclusion of add-ons has stirred considerable controversy. These additional procedures, offered with the intention of enhancing live birth rates, have sparked debates due to limited evidence supporting their efficacy and safety. The VALUE Study, a qualitative exploration, delves into the decision-making process surrounding the use of IVF add-ons, shedding light on the perspectives of both patients and health professionals.
 
Understanding the Controversy
The backdrop of the VALUE Study centres on the polarizing nature of IVF add-ons. Despite their questionable effectiveness and the financial burden they place on patients, these procedures remain popular. The study seeks to address the gaps in understanding by investigating the factors influencing decision-making, sources of information, and concerns regarding safety and effectiveness.
 
Study Design
The VALUE Study employs a qualitative, semi-structured interview approach, employing inductive thematic analysis of anonymized transcriptions. Participants, comprising patients (n=25) and health professionals, including embryologists (n=25) and clinicians (n=24), were recruited from diverse clinical settings in the UK and Australia, encompassing both public and private sectors.
 
Key Findings

1. Patient Decision-making: Patients often base their decisions on hope, downplaying considerations of safety, efficacy, or cost. The allure of add-ons lies in the prospect of improving chances, and a professional opinion significantly influences their choices.
2. Professional Perspectives: Health professionals, on the other hand, prioritize the best outcomes for their patients. They are keen on avoiding unnecessary financial burdens and emphasize evidence-based decision-making. Interestingly, they perceive the use of add-ons as patient-driven.
3. Challenges in Applying Evidence: Both patients and professionals face challenges in applying available evidence to individual circumstances. In the realm of IVF medicine, where stakes are high, making informed decisions becomes especially complex.

 
Conclusion
The VALUE Study brings to light the nuanced dynamics between patients and professionals in the realm of IVF add-ons. While patients value autonomy in decision-making, professionals stress the critical importance of informed consent. Bridging the gap in discourse is essential, offering an opportunity to enhance the quality of communication between these two crucial stakeholders. As the debate on IVF add-ons continues, the study suggests that a more informed and collaborative approach could pave the way for improved patient outcomes in assisted reproductive technologies.

Read more here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10373702/

Citation: Armstrong S, Vaughan E, Lensen S, Caughey L, Farquhar C, Pacey A, Balen M, Peate M, Wainwright E. Patient and professional perspectives about using in vitro fertilisation add-ons in the UK and Australia: a qualitative study. BMJ Open

Acknowledgements: ChatGPT was used to generate this content

Introduction
In the realm of patient-centered care, health literacy plays a pivotal role in ensuring individuals can access, process, and understand crucial health information. This capacity is context-specific, varying across health conditions, treatments, and healthcare environments. The prevalence of low health literacy (LHL) is significant, affecting a substantial portion of populations worldwide, leading to potential disparities in healthcare outcomes. This blog post explores the intersection of oncofertility, the preservation of fertility in cancer patients, and LHL through a systematic review of interventions aimed at improving knowledge and decision-making in this medically underserved group.
 
Understanding Health Literacy
Low health literacy is associated with adverse health outcomes, leading to limited health knowledge, heightened decisional uncertainty, and increased dissatisfaction with care. This is particularly worrisome in situations where values-based decision-making is crucial, such as in oncofertility. Cancer treatments can jeopardize fertility, necessitating informed decisions about fertility preservation before commencing chemotherapy.
 
The Role of Decision Aids
Decision aids (DAs) are recommended to support informed and value-congruent decision-making. However, most existing studies focus on functional health literacy, leaving a gap in addressing the needs of patients with LHL. Simplifying information is essential but insufficient; multimedia elements, interactive features, and cultural appropriateness are equally important. Addressing all three levels of health literacy (functional, communicative, critical) is crucial when developing DAs.
 
Despite the importance of oncofertility decisions, an initial literature search found no articles at the intersection of oncofertility and LHL. This led to a broader search focusing on interventions in cancer or fertility settings to guide communication and patient education in oncofertility.
 
Methods
The systematic review followed PRISMA guidelines, conducting a comprehensive literature search on various databases. Studies meeting specific criteria were included, focusing on interventions for adults with LHL related to cancer or fertility. The search identified 233 papers, with 11 meeting eligibility criteria.
 
Results
The included studies, conducted between 2001 and 2020 in the USA, Australia, and the Netherlands, covered various interventions, including decision-support tools, mobile health applications, and communication tools. These interventions demonstrated effectiveness in improving knowledge and decision-related outcomes in LHL patients.
 
Decision-Support Tools - Decision-support tools, such as computerized entertainment education (edutainment) and DAs for colorectal cancer screening, were found to be effective. They employed health literacy principles, including plain language, multimedia features, and interactive learning modules.
 
Mobile Health Applications - Mobile health applications, featuring decision aids and self-ordering functions for cancer screening, were successful in increasing screening test ordering and completion. An interactive multimedia learning program about cancer trial participation yielded mixed conclusions but demonstrated increased knowledge and positive attitudes.
 
Communication Tools - Communication tools, including information provision with a "patient activation" component plus telephone counseling, proved efficacious in activating LHL patients to initiate clinical discussions and undertake cancer screening.
 
Conclusion: Bridging Gaps for Informed Oncofertility Care
In unraveling the complexities surrounding health literacy in the oncofertility realm, our exploration has unearthed both promising interventions and concerning gaps. The dearth of dedicated studies on low health literacy (LHL) in oncofertility settings underscores a critical need for tailored solutions to ensure comprehensive patient care.
 
Drawing from the broader field of oncology interventions, our review identified three main categories—decision-support tools, mobile health applications, and communication tools—that exhibit potential in enhancing knowledge, reducing decisional conflict, and fostering clarity in healthcare choices for LHL patients. The incorporation of health literacy principles, including plain language and multimedia elements, emerged as a strategic approach to optimize information delivery.
 
The power of technology, particularly online decision aids enriched with multimedia features, showcases a promising avenue for improving accessibility and decisional support. However, a notable gap remains in fertility-related interventions for LHL cancer patients, emphasizing the urgency for collaborative action and shared decision-making models.
 
As we confront methodological limitations and advocate for large-scale randomized controlled trials (RCTs) with standardized outcomes, the call for addressing digital health literacy becomes paramount. Integrating considerations for this often-overlooked aspect will be crucial in shaping future studies and ensuring the successful implementation of evidence-based interventions.
 
The way forward demands a united effort from researchers, clinicians, and advocates. By filling research gaps, developing targeted interventions, and promoting awareness, we can empower every patient on their unique oncofertility journey. It is only through this collective commitment that we can guarantee equitable healthcare, where no patient, regardless of health literacy level, is left behind in the pursuit of informed decisions and optimal care. The journey to bridging these gaps is not just a call to action; it's a mandate for ensuring the well-being of every individual navigating the intricate landscape of oncofertility and health literacy.
 
Read more here:  https://www.sciencedirect.com/science/article/pii/S0738399123004779

Citation: Ong, C., Li, A. D., Marino, J. L., & Peate, M. (2023). Interventions to improve oncofertility knowledge and decision-making in patients with low health literacy: A systematic review. Patient Education and Counseling, 108096.

Acknowledgements: ChatGPT was used to generate this content

Introduction
The landscape of planned oocyte cryopreservation (POC) is rapidly evolving, with increasing numbers of women in high-income countries opting for this fertility preservation method. In the United States alone, the annual number of POC cycles has surged from around 2,700 in 2012 to a staggering 13,800 in 2018. Notably, the COVID-19 pandemic has further fueled interest in POC, revealing a growing trend in women considering this option.
 
Initially designed for fertility preservation in cancer patients, POC has transcended its experimental label, becoming an accessible choice for women concerned about age-related infertility. However, the decision to pursue POC is multifaceted, involving considerations such as age, success rates, costs, and potential health risks. This blog post delves into the findings of a survey exploring the information and decision support needs of women intrigued by the prospect of planned oocyte cryopreservation.
 
Decoding the Decision-Making Process
The decision to undergo POC is not a simple one; rather, it involves a myriad of factors. Age emerges as a pivotal predictor of success, with live birth rates per thawed-oocyte-derived embryo transfer decreasing significantly with advancing age. The financial implications of POC, including retrieval costs, storage fees, and future utilization expenses, create a substantial barrier for many women.
 
Moreover, the physical aspects of ovarian stimulation and oocyte collection introduce small yet noteworthy health risks. While complications are rare, they remain a concern for potential POC users. Additionally, the risk of severe maternal morbidity from pregnancy increases with age, adding another layer of complexity to the decision-making process.
 
Unraveling the Information Gap
The limited available evidence on POC decisions suggests that women crave more information and support to navigate this complex terrain. Studies indicate that inadequate information and emotional support contribute to regret among women who have undergone POC. The sources of information are diverse, ranging from media and online platforms to fertility clinics and primary care physicians.
 
However, these sources present their own challenges. Media information is often oversimplified, lacking depth and completeness. Fertility clinic information may carry commercial biases, and primary care physicians may feel ill-equipped to provide comprehensive guidance. This highlights a critical need for balanced and accessible information.
 
Surveying the Information Landscape
To shed light on the information and decision support needs of women considering POC, an online cross-sectional survey was conducted in Australia. Women aged 18-45 years, proficient in English, and interested in POC information were eligible to participate. The survey covered various aspects, including participant characteristics, information sources, preferences for information delivery, knowledge, decisional conflict, and time to decision.
 
Results and Reflections
The survey, conducted from June to December 2018, garnered responses from 332 women who met the eligibility criteria. Key findings include:
 
1. Demographics: Participants were predominantly aged ≤30 years, single, university-educated, and working in professional occupations.
 
2. Consideration of POC: The majority had contemplated POC, with various reasons such as single relationship status, a desire to invest in future reproductive potential, and health conditions driving interest.
 
3. Information Sources: Over half of the participants had actively searched for POC information, mainly relying on fertility clinic websites. Consultation with primary care physicians and fertility specialists was less common.
 
4. Preferences for Information Delivery: Participants favored receiving POC information between ages 19-30 years, primarily from healthcare professionals or through online resources.
 
5. Knowledge Gaps: Despite interest, participants exhibited knowledge gaps, particularly regarding POC procedure-related health risks, success rates, and the impact of time on oocyte quality in storage.
 
6. Decisional Conflict: Women who had considered POC often experienced high decisional conflict, emphasizing the need for additional decision support. Consulting an IVF specialist was associated with lower decisional conflict.
 
7. Time to Decision: The median time spent contemplating POC was around two years, with implications for the potential success of POC.
 
Closing Thoughts
The survey outcomes underscore the complexity of the POC decision-making process and the information gaps women face. Addressing these gaps is crucial for empowering women to make informed choices aligned with their reproductive goals. Primary care physicians and online resources emerge as key players in disseminating comprehensive and unbiased information. Additionally, the findings emphasize the potential value of decision aids in reducing decisional conflict.
 
As POC continues to gain prominence, the healthcare community must collaborate to provide accessible, transparent, and evidence-based information. By doing so, we can empower women to navigate the intricate landscape of planned oocyte cryopreservation and make decisions that align with their individual needs and aspirations.

Read more here: https://link.springer.com/article/10.1007/s10815-023-02796-x
 
Citation: Sandhu, S., Hickey, M., Braat, S., Hammarberg, K., Lew, R., Fisher, J., ... & Eggsurance Collaborative Group Agresta F Lieberman D Anderson R Norman R Hart R Johnson L Michelmore J Parle A Summers F Allingham C. (2023). Information and decision support needs: a survey of women interested in receiving planned oocyte cryopreservation information. Journal of Assisted Reproduction and Genetics, 40(6), 1265-1280.

Acknowledgements: ChatGPT was used to generate this content

Introduction
In a world where family planning decisions are becoming increasingly complex, elective egg freezing has emerged as a popular option for women who wish to extend their fertile years. The decision to freeze one's eggs is multifaceted and involves a range of considerations, from the financial aspects to the potential health risks. To address the need for comprehensive and accessible information, researchers have developed a Decision Aid for elective egg freezing. In this blog post, we will explore the development of this Decision Aid and the results of a phase 1 evaluation, shedding light on its acceptability and utility for women making this important decision.

Understanding the Need
The average age at which women have their first child has been steadily rising in many high-income countries. This trend, combined with various life circumstances, has led more women to consider elective egg freezing as a way to preserve their fertility. Women may choose to freeze their eggs for a variety of reasons, including the absence of a partner, concerns about their biological clock, a desire to insure against future infertility, or to avoid potential regret.
However, the decision to freeze one's eggs is not without its challenges. It involves significant financial costs, and the success rates decrease as women age. Furthermore, there are rare but serious health risks associated with the procedure. Moreover, many women who freeze their eggs may not end up using them, often due to the lack of a suitable partner for co-parenting.
Recognizing these complexities, the researchers embarked on the journey to develop a Decision Aid that would provide women with the necessary information and support to make informed choices about elective egg freezing.
Development of the Decision Aid
To create the Decision Aid, a collaborative group of experts from various fields, including psychology, gynaecology, clinical research, and public education, joined forces. They followed international patient decision aid standards and utilized the Ottawa Decision Support Framework to ensure that the content and design met the highest quality standards.
The Decision Aid, titled 'Egg Freezing,' offers comprehensive information, including the pros, cons, and implications of egg freezing, as well as alternatives to consider. It is designed with clarity and accessibility in mind, using text, infographics, and video animations. A special feature is a values clarification exercise, which helps users assess their personal preferences and concerns regarding egg freezing.

Phase 1 Evaluation: Acceptability and Utility
To evaluate the Decision Aid, researchers conducted a phase 1 study involving 26 Australian women aged 18–45 who were interested in receiving egg freezing information. Here are some key findings from the evaluation:

1. Acceptability: The vast majority of participants found the Decision Aid acceptable, with 23 out of 25 respondents expressing their satisfaction.
2. Utility: Most participants reported that the Decision Aid was useful for explaining their options and reaching a decision. It significantly reduced their decisional conflict, which is a measure of uncertainty in decision-making.
3. Recommendation: Nearly all participants said they would recommend the Decision Aid to other women considering elective egg freezing.
4. Improvement in Knowledge: After reviewing the Decision Aid, participants demonstrated improved knowledge about egg freezing and age-related infertility.
5. Emotional Impact: While the Decision Aid did raise some concerns among participants, there were no reports of serious worry or concern.
6. Values Clarification Exercise: Most participants found the values clarification exercise useful in guiding their decision-making.

Conclusion
The development and phase 1 evaluation of the Decision Aid for elective egg freezing represent a significant step forward in empowering women to make informed decisions about their fertility. The tool's acceptability, utility, and positive impact on knowledge and decisional conflict suggest that it holds great promise as a valuable resource.
As further evaluation through a prospective randomized control trial is planned, the Decision Aid may soon become widely available to women considering elective egg freezing. With this resource at their disposal, women can navigate the complexities of this decision with greater confidence and clarity, ultimately shaping their reproductive futures on their terms.

Read more here: https://bmcmedinformdecismak.biomedcentral.com/articles/10.1186/s12911-023-02178-4 
 
Citation: Sandhu, S., et al. The development and phase 1 evaluation of a Decision Aid for elective egg freezing. BMC Medical Informatics and Decision Making 2023

Acknowledgements: ChatGPT was used to generate this content

Post by A/Prof Michelle Peate
​
Ovarian cancer is the third most common gynaecological cancer among women. Despite its prevalence, ovarian cancer remains under-researched, and the supportive care needs of women with this condition are often overlooked. Our recent study aimed to shed light on the experiences and priorities of women diagnosed with ovarian cancer. The findings provide valuable insights that can inform the development of tailored support and care strategies for women facing this challenging diagnosis.
 
Exploring the Experiences and Priorities
The study was conducted in collaboration with Ovarian Cancer Australia (OCA), involved 288 participants recruited through a targeted social media campaign. The participants were asked to rank nine aspects of living with ovarian cancer based on their perceived level of challenge. The results showed that fear of cancer recurrence was the most commonly (51%) identified and challenging aspect – highlighting the need for interventions that address this and to alleviate the distress associated with the possibility of cancer returning.
 
Age-Related Differences
One interesting aspect was the potential influence of age on the experiences and priorities. While the priorities did not significantly vary by age, there were notable differences in the utilization of support and information resources. Younger participants, aged 19-49, showed a higher inclination to use a mobile app version of the OCA resilience kit, indicating their preference for digital tools in managing their condition. Moreover, younger women expressed a greater interest in utilizing a fertility preservation decision aid, highlighting their specific concerns related to future parenthood and family planning.
 
Advancing Patient-Centered Tailored Support and Care 
Patient-centered care, which places the individual's needs and preferences at the forefront of healthcare delivery, is crucial for improving the quality of life of women with ovarian cancer. By identifying the priorities and experiences of these women, healthcare providers can develop tailored interventions and resources that better address their unique challenges. The study highlights the importance of considering age-specific differences and utilizing technology-based solutions to reach and engage a wider audience, including older individuals who may face barriers in accessing relevant health information online. By adopting patient-centered approaches, healthcare providers and support organizations can make significant strides in improving the well-being and quality of life for women living with ovarian cancer.
 
Read more here: https://link.springer.com/article/10.1007/s00520-023-07903-3
 
Citation: Pasvanis M, et al. Exploring the experiences and priorities of women with a diagnosis of ovarian cancer. Supportive Care in Cancer 2023. 
 
Acknowledgements: ChatGPT was used to generate this content

Post by A/Prof Michelle Peate

Getting diagnosed with cancer as a young person can be overwhelming. It not only affects your health but also brings up worries about the future, including the ability to have children. We aimed to understand how young people with cancer and their families make decisions about preserving their fertility. By exploring their experiences, we hope to improve the support and care available to these individuals.
 
Understanding Fertility Concerns
Cancer treatments can sometimes affect fertility, making it harder to become pregnant or have biological children later on. Fertility preservation offers options to protect fertility, but it comes with its own risks and considerations. The decision to pursue fertility preservation is complex, as young patients must weigh their desire for children against the costs and chances of success, all while dealing with the stress of a cancer diagnosis.
 
The Importance of Family and Partner Support
Family and partners play a crucial role in the lives of young people with cancer. They help navigate the challenges of treatment and provide emotional support. In this study, researchers wanted to understand how family members and partners contribute to the decision-making process regarding fertility preservation. 
 
Key Findings
The study involved 196 young cancer patients in Australia. 

• Fertility Discussions: About 83% of participants were informed by healthcare providers that their cancer treatment could affect their fertility. Most participants felt that these discussions happened at the right time and were handled well by their healthcare team.
• Fertility Preservation Decision-Making: Among the participants, 63% pursued fertility preservation. Interestingly, more males than females chose this option. Parents played a significant role in decision-making, with around two-thirds of participants involving at least one parent. Mothers were particularly involved and were helpful by the young patients. Fathers also played a supportive role.
• Involvement of Partners and Siblings: While parents were actively involved, partners and siblings had less participation in the decision-making process. However, those who were involved were helpful by the young patients.

 
In summary, this Australian study sheds light on the experiences of young cancer patients when it comes to making decisions about preserving their fertility. It highlights the importance of involving parents, especially mothers and fathers, in these discussions. Their support is valuable in helping young patients make informed choices about fertility preservation. The study also emphasizes the need to explore how partners and siblings can contribute to these decisions. By understanding the dynamics of family and partner support, healthcare providers can improve the care and support available to young cancer patients, ultimately enhancing their quality of life and well-being as they continue their cancer journey.
 
Read more here: https://www.liebertpub.com/doi/full/10.1089/jayao.2023.0037
 
Citation: Marino JL et al. Experiences of Family and Partner Support in Fertility Decision-Making Among Adolescents and Young Adults with Cancer: A National Australian Study. JAYAO 2023.
​
Acknowledgements: ChatGPT was used to generate this content

Post by Lucy Caughey

Elective egg freezing is an option women choose to preserve their fertility to have a genetically linked child in the future, for reasons such as not having met a suitable partner to have a child with. Elective egg freezing became available in Australian in December 2012, when the procedure was no longer labelled experimental. Since then egg freezing has grown exponentially and in 2020 there were 2900 freeze all egg cycles in Australia and New Zealand. On average women freeze approximately 9 eggs per cycle depending on their age (9 eggs if they are under 35, 9 eggs if they are 35-39, and 6 eggs if they are aged 40 plus). 

Therefore, many women are choosing to freeze their eggs, however research tells us most women (68% to 94%) do not return to use their eggs, resulting in an abundant but unquantified number of eggs in storage. Women do not return to use their eggs for many reasons such as, conceiving naturally, reaching an upper age-limit of willingness to become mothers, and not wanting to be a single parent (having not met a suitable partner and choosing not to use donor sperm). Despite the low usage rates of stored eggs, the majority of women do not regret freezing their eggs, because a principal reason of women freezing their eggs is having no regrets or as much choice as possible for their parenting future. This is a concept many people, not faced with this situation, seem to have difficulty grasping, as they view the only successful outcome of freezing eggs is to have a child. However, women who freeze their eggs, like women who naturally conceive, prefer to bring a child into the world in an ideal situation, financially, emotionally and providing enough time and support for a child. 

Therefore, we now have many eggs in storage in Australia and because most jurisdictions of Australia have a 10-year storage limit for gametes, most elective egg freezers now and in the future will have to decide what to do with their surplus frozen eggs. This is called a disposition decision. In Australia women can choose to  

1. Donate to a family member or friend.
2. Donate to known others, who were previously unknown, but met specifically for egg donation purposes (e.g., people advertising for an egg donor [often online] or introduced through friends or family).
3. Donate to an unknown people - egg bank or people on an egg donor waiting list at a fertility clinic and whom women do not meet before donating your egg.
4. Donate to research (e.g., research could involve thawing and freezing eggs or training techniques for embryologists however by law this would not involve creating a life from the egg).
5. Discard  - involves the clinic thawing and disposing of unused eggs.
6. Reclaim - involves the fertility clinic releasing the thawed eggs to women for personal reasons such as, to have a closure ceremony with the eggs, or because it reassures some women to know exactly what has happed to their unused eggs. These eggs are no longer viable for family formation due to the thawing process.

 
Oocyte disposition decision outcomes and the factors influencing the decision have been explored for the first time in the study Elective egg freezers' disposition decisions: a qualitative study.
 
This study found that the disposition decisions are dynamic and often women’s preferences at the beginning of the process of freezing their eggs is not their preference at the time they have to make their final decision depending on a number of factors. One of these factors was whether women achieve motherhood or not. When women first achieve motherhood they are in an emotional state of happiness and want to share the joy of motherhood, therefore they are open to donating their eggs to others. The wish of wanting to share the joy of motherhood are driven by feelings of empathy for others who have faced similar fertility challenges, reciprocity for those women who have received donor sperm and now feel they would also like to reciprocate by donating to others and altruism , the feeling of just wanting to give to others in need. However, when these women are actually faced with making their final decision their focus changes to the child. The child being the child or children they are raising and the impacts on that child. For instance, the concern their child may have too many half-siblings so the child feels overwhelmed or has too many half-siblings to have real relationships with. The potential egg donors are also concerned about the child resulting from their egg donation, will they have family identity issues or not feel they fit in to their family. These are serious concerns women have. 

For those women who did not achieve motherhood, they are in a grieving process and feel isolated and misunderstood. They feel misunderstood as their loss is not tangible like a miscarriage but conceptual, the loss of a dream of being a mother. These women are unlikely to be able to consider donating to others as their dream has not come true, so they move on to deciding whether to donate their eggs to research, to discard them or to reclaim them. Reclaiming their eggs to take them home to have a closure ceremony helps some women in their grieving process.