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