Experiences and intentions of patients undergoing medically indicated oocyte or embryo cryopreservation: a qualitative study.

STUDY QUESTION: What structural (logistical) and psychological challenges do patients who cryopreserve oocytes or embryos for medical reasons face, including possible barriers to using their frozen materials? SUMMARY ANSWER: The majority of women who underwent oocyte or embryo cryopreservation for medical reasons reported a desire to use their frozen oocytes or embryos but had been impeded by ongoing medical issues, the need for a gestational carrier, or the lack of a partner. WHAT IS KNOWN ALREADY: Current data suggest that many women who have frozen oocytes or embryos for medical indications are concerned about the prospect of infertility and have unique emotional and financial needs that differ from patients with infertility. Further, most patients have not returned to use their cryopreserved materials. STUDY DESIGN, SIZE, DURATION: This is a qualitative interview study of 42 people who cryopreserved between January 2012 and December 2021. Interviews were conducted between March 2021 and March 2022. PARTICIPANTS/MATERIALS, SETTING, METHODS: All participants were cisgender women who had undergone oocyte or embryo cryopreservation for medical indications at an academic fertility center. Participants were invited to interview by email if they were younger than 40 years old when their oocytes or embryos were cryopreserved. Interviews were conducted over the internet and transcribed verbatim. Data were analyzed using thematic analysis with the constant comparison method. MAIN RESULTS AND THE ROLE OF CHANCE: Saturation was reached at 42 interviews. The median age of participants was 35 years old (range 28-43) at interview and 31 years old (range 25-39) at cryopreservation. Of the 42 women, 30 had a cancer diagnosis, while 7 had non-cancer chronic medical conditions, and 5 had hereditary cancer susceptibility syndromes. There were 12 women who banked embryos and 30 who banked oocytes. The majority of women indicated a desire to use their cryopreserved materials, but many were unsure about how or when. Four had already used their frozen oocytes or embryos, while another four had conceived without assisted reproduction. The cryopreservation experience was described by the majority as highly emotionally challenging because they felt out of place among couples receiving infertility treatment and, for cancer patients, overwhelmed by the complex decisions to be made in a short time period. Common reported barriers to using frozen materials included ongoing medical issues preventing pregnancy, the need for a gestational carrier, the lack of a partner, and the desire for unassisted conception. Some were glad to have frozen oocytes or embryos to allow more time to meet a partner or if they were considering becoming single parents. LIMITATIONS, REASONS FOR CAUTION: The majority of participants had their oocytes or embryos frozen at a single, urban, academic fertility center, which may limit generalizability. We also could not calculate a response rate because the snowball technique was used to identify additional participants, so did not know the total number of people invited to participate. Like other interview studies, our study may be subject to response bias because those who agreed to participate may have particularly positive or negative views about their experiences. Furthermore, the mean follow-up time since freezing was relatively short (3.3 years, median 2.7 years), which may not have been enough time for some patients to use their frozen materials. WIDER IMPLICATIONS OF THE FINDINGS: Learning about the experiences of patients undergoing medically indicated oocyte and embryo cryopreservation can help clinicians better counsel these patients regarding decisions and hurdles they may encounter. We found that most patients had not returned to use their frozen materials because of ongoing medical issues, the need for a gestational carrier, lack of a partner, or the desire to attempt unassisted reproduction. STUDY FUNDING/COMPETING INTEREST(S): This study did not receive any funding. The authors of this study have no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: N/A.

Pediatric oncofertility care in limited versus optimum resource settings: results from 39 surveyed centers in Repro-Can-OPEN Study Part I & II.

PURPOSE: As a secondary report to elucidate the diverse spectrum of oncofertility practices for childhood cancer around the globe, we present and discuss the comparisons of oncofertility practices for childhood cancer in limited versus optimum resource settings based on data collected in the Repro-Can-OPEN Study Part I & II. METHODS: We surveyed 39 oncofertility centers including 14 in limited resource settings from Africa, Asia, and Latin America (Repro-Can-OPEN Study Part I), and 25 in optimum resource settings from the USA, Europe, Australia, and Japan (Repro-Can-OPEN Study Part II). Survey questions covered the availability of fertility preservation and restoration options offered in case of childhood cancer as well as their degree of utilization. RESULTS: In the Repro-Can-OPEN Study Part I & II, responses for childhood cancer and calculated oncofertility scores showed the following characteristics: (1) higher oncofertility scores in optimum resource settings than in limited resource settings for ovarian and testicular tissue cryopreservation; (2) frequent utilization of gonadal shielding, fractionation of anticancer therapy, oophoropexy, and GnRH analogs; (3) promising utilization of oocyte in vitro maturation (IVM); and (4) rare utilization of neoadjuvant cytoprotective pharmacotherapy, artificial ovary, in vitro spermatogenesis, and stem cells reproductive technology as they are still in preclinical or early clinical research settings. CONCLUSIONS: Based on Repro-Can-OPEN Study Part I & II, we presented a plausible oncofertility best practice model to help optimize care for children with cancer in various resource settings. Special ethical concerns should be considered when offering advanced and innovative oncofertility options to children.

A synopsis of global frontiers in fertility preservation.

Since 2007, the Oncofertility Consortium Annual Conference has brought together a diverse network of individuals from a wide range of backgrounds and professional levels to disseminate emerging basic and clinical research findings in fertility preservation. This network also developed enduring educational materials to accelerate the pace and quality of field-wide scientific communication. Between 2007 and 2019, the Oncofertility Consortium Annual Conference was held as an in-person event in Chicago, IL. The conference attracted approximately 250 attendees each year representing 20 countries around the world. In 2020, however, the COVID-19 pandemic disrupted this paradigm and precluded an in-person meeting. Nevertheless, there remained an undeniable demand for the oncofertility community to convene. To maintain the momentum of the field, the Oncofertility Consortium hosted a day-long virtual meeting on March 5, 2021, with the theme of "Oncofertility Around the Globe" to highlight the diversity of clinical care and translational research that is ongoing around the world in this discipline. This virtual meeting was hosted using the vFairs ® conference platform and allowed over 700 people to participate, many of whom were first-time conference attendees. The agenda featured concurrent sessions from presenters in six continents which provided attendees a complete overview of the field and furthered our mission to create a global community of oncofertility practice. This paper provides a synopsis of talks delivered at this event and highlights the new advances and frontiers in the fields of oncofertility and fertility preservation around the globe from clinical practice and patient-centered efforts to translational research.

Developing Sustainable Cancer Education Programs: Training Public Health Students to Deliver Cancer 101 in Puerto Rico.

The use of promotores to educate Hispanic communities about different health topics has been proven successful, albeit with limitations in program sustainability. The goal of this study was to develop a sustainable train-the-trainer model to train graduate public health (PH) students to disseminate cancer education among communities in Puerto Rico (PR). Graduate students (n = 32) from Ponce Health Sciences University's (PHSU) PH program participated in a 2-day Cáncer 101 training, where they learned how to deliver nine cancer modules to the community. Cancer knowledge was assessed before and after the training via 54 items measuring discussed concepts. Participants also assessed the training's effectiveness by completing a training evaluation informed by social cognitive theory (SCT) constructs of self-efficacy, outcome expectations, facilitation, and observational learning. Participants were mainly female (78.1 %), 26.7 ± 3.9 years old, and enrolled in a Masters-level program (81.3 %). Participants reported an average 11.38-point increase in cancer knowledge after attending the training [t(31) = 14.88, p < .001]. Participants also evaluated the training favorably upon completion, reporting satisfactory comments in the open-ended responses and high scores on measured SCT constructs. The Cáncer 101 training program effectively prepared students to deliver cancer education to local communities. Training graduate PH students to educate communities about health issues is an innovative, and potentially sustainable, way to reach underserved populations.

When a Common Language Is Not Enough: Transcreating Cancer 101 for Communities in Puerto Rico.

In Puerto Rico (PR), cancer is the leading cause of death. Previous research has identified the need for cancer education in PR. Using culturally adapted cancer curricula to train local health educators may effectively increase cancer education and reduce health disparities. This article describes the three-phase process used to transcreate the Cancer 101 curriculum to train Master of Public Health (MPH) students to educate PR communities. First, an expert panel collaboratively reviewed the curriculum for content, legibility, utility, and colloquialisms. Recommendations included incorporating local references and resources, replacing words and examples with culturally relevant topics, and updating objectives and evaluation items. Subsequent focus groups with 10 MPH students assessed the adaptation's strengths, weaknesses, and utility for future trainees. Participants were satisfied with the curriculum's overall adaptation, ease of use, and listed resources; further improvements were suggested for all modules. Final expert panel revisions highlighted minor feedback, with the final curriculum containing nine transcreated modules. The transcreation process identified the need for changes to content and cultural translation. Changes were culturally and literacy-level appropriate, represented PR's social context, and were tailored for future trainees to successfully deliver cancer education. Findings highlight the importance of adapting Spanish educational materials across Hispanic sub-groups.

Development of a Spanish language fertility educational brochure for pediatric oncology families.

STUDY OBJECTIVE: Education materials detailing fertility preservation options geared towards pediatric oncology patients are inadequately available, particularly materials that are culturally tailored. An English language pediatric fertility preservation brochure was developed in 2011, and given the significance of family building among Hispanics, it is important to transcreate materials for these audiences using learner verification to explore the unique preferences of the population. DESIGN: Qualitative face-to-face interviews and focus groups. PARTICIPANTS: Spanish-speaking patients (n = 10), parents (n = 10), and healthcare providers (n = 5). Suggestions for revisions were tested with focus groups of the same population (N = 16). MAIN OUTCOME MEASURES: Design, readability, likelihood to read, and overall opinion. RESULTS: Feedback was organized into 2 distinct themes: design and reader action. Overall the majority of parents and patients wanted personal accounts of other patients who had undergone fertility preservation, as well as photos of actual patients. The medical terminology in the brochure was acceptable and understood by most. The majority of participants who preferred the design with vivid colors and patterns explained this was because that brochure also contained more relevant information; however, both brochures had identical information. Many participants explained they would be receptive to receiving the brochure and the reproductive health information should be reinforced throughout cancer care. CONCLUSIONS: A learner verification approach to create pediatric educational materials can judiciously identify unique preferences for information. These results will be utilized to educate Spanish-speaking pediatric oncology patients and their parents to improve decision-making processes regarding future parenthood.

Clinical guide to fertility preservation in hematopoietic cell transplant recipients.

With broadening indications, more options for hematopoietic cell transplantation (HCT) and improvement in survival, the number of long-term HCT survivors is expected to increase steadily. Infertility is a frequent problem that long-term HCT survivors and their partners face and it can negatively impact on the quality of life. The most optimal time to address fertility issues is before the onset of therapy for the underlying disease; however, fertility preservation should also be addressed before HCT in all children and patients of reproductive age, with referral to a reproductive specialist for patients interested in fertility preservation. In vitro fertilization (IVF) and embryo cryopreservation, oocyte cryopreservation and ovarian tissue banking are acceptable methods for fertility preservation in adult women/pubertal females. Sperm banking is the preferred method for adult men/pubertal males. Frequent barriers to fertility preservation in HCT recipients may include the perception of lack of time to preserve fertility given an urgency to move ahead with transplant, lack of patient-physician discussion because of several factors (for example, time constraints, lack of knowledge), inadequate access to reproductive specialists, and costs and lack of insurance coverage for fertility preservation. There is a need to raise awareness in the medical community about fertility preservation in HCT recipients.

Patient education in allogeneic hematopoietic cell transplant: what patients wish they had known about quality of life.

Quality of life (QOL) is increasingly recognized as an important clinical outcome of hematopoietic cell transplantation (HCT), but patient education is often overlooked. The aim of the current qualitative study was to examine education regarding post-HCT QOL from the patient's perspective. Allogeneic HCT recipients participated in one of four focus groups. Participants were asked to recall what they had been told about post-HCT QOL as they were preparing for transplant, how their QOL differed from what they expected and how to educate future patients about post-HCT QOL. Verbatim transcripts were coded for both a priori and emergent themes using content analysis. A total of 24 patients participated (54% female, mean age 51, range 23-73 years). Participants frequently expressed the desire for additional education regarding post-HCT QOL, particularly late complications. They noted that late complications were often unexpected, had a profound impact on their QOL and threatened their ongoing sense of recovery. They emphasized that the timing, content and format of education regarding QOL should be flexible to meet their diverse needs. Findings from the current study draw attention to the importance of patient education regarding post-HCT QOL as well as additional QOL research designed with patient education in mind.

Physician perceptions and practice patterns regarding fertility preservation in hematopoietic cell transplant recipients.

Physician practice variation may be a barrier to informing hematopoietic cell transplant (HCT) recipients about fertility preservation (FP) options. We surveyed HCT physicians in the United States to evaluate FP knowledge, practices, perceptions and barriers. Of the 1035 physicians invited, 185 completed a 29-item web-survey. Most respondents demonstrated knowledge of FP issues and discussed and felt comfortable discussing FP. However, only 55% referred patients to an infertility specialist. Most did not provide educational materials to patients and only 35% felt that available materials were relevant for HCT. Notable barriers to discussing FP included perception that patients were too ill to delay transplant (63%), patients were already infertile from prior therapy (92%) and time constraints (41%). Pediatric HCT physicians and physicians with access to an infertility specialist were more likely to discuss FP and to discuss FP even when prognosis was poor. On analyses that considered physician demographics, knowledge and perceptions as predictors of referral for FP, access to an infertility specialist and belief that patients were interested in FP were observed to be significant. We highlight variation in HCT physician perceptions and practices regarding FP. Physicians are generally interested in discussing fertility issues with their patients but lack educational materials.

Decisions and ethical issues among BRCA carriers and the use of preimplantation genetic diagnosis.

The lifetime risks for both breast and ovarian cancer for BRCA mutation carriers far exceeds the general population risk of 13% for breast cancer and 1.4% for ovarian cancer. BRCA carriers have unique and medically complicated decisions to make regarding their cancer treatment or risk reduction. As BRCA testing becomes increasingly common among unaffected individuals in families with a previously documented BRCA mutation, there are a growing number of individuals with unique psychosocial needs and concerns. This review paper describes the BRCA 1/2 population, discusses preimplantation genetic diagnosis (PGD), and describes the decisions and ethical issues related to PGD among the BRCA 1/ 2 population.

A message of hope: creation of the Faces of Lung Cancer project for increasing awareness of clinical trials.

In 2002, the Thoracic Oncology Advocacy Program at H. Lee Moffitt Cancer Center and Research Institute was created with a mission to contribute to the prevention and cure of lung cancer by embracing the patient perspective. In an effort to increase awareness of clinical trials (CTs) and to humanize the CT process, members of the advocacy programme were involved in the creation of the Faces of Lung Cancer project. Twelve lung cancer patients who participated in a CT, four caregivers of patients who had been on a trial and four thoracic health care professionals were interviewed and photographed by a professional photographer with prior experience in photo-documentary work. Preliminary results indicate just the process of participating in the Faces of Lung Cancer project and creating the photo essay has had a positive impact on the lives of cancer patients and their caregivers. Formal evaluation of the Faces of Lung Cancer project is underway; however, preliminary results indicate that the project is viewed as successful in terms of conveying a message of hope and increasing awareness. By including visual displays, in conjunction with patient interviews, the photo essay is able to generate and blend powerful information and images that provide a richer, more complete portrayal of the context of a patient's experience.

Adolescent perceptions of violence: formative research findings from a social marketing campaign to reduce violence among middle school youth.

OBJECTIVE: To identify the specific barriers and benefits of violent behaviours as noted by middle school youth and to develop a social marketing campaign that attends to the needs and wants of the target audience. STUDY DESIGN: A non-experimental, qualitative study design was used to assess youth perceptions of violence in a large, southeast urban school district. METHODS: Using a social marketing approach, a series of in-depth interviews were conducted with middle school youths, to gain an understanding of perceived barriers and benefits of violent behaviours. Additionally, interviews assessed youth preferences for an effective spokesperson for an anti-violence campaign. Qualitative analysis of coded transcripts revealed key themes that were incorporated into a multi-media initiative. RESULTS: Critical themes of the research highlighted that the majority of violence occurs at school, during school hours and most of the youths believed the use of violence was necessary to defend themselves from other peers or to protect family members. Another key finding pertained to adolescent views on violent people; although the majority of respondents reported engaging in violent acts, they did not view themselves as violent. Results were used to inform the development of a social marketing campaign designed to reduce youth violence among middle school students in a large, urban central Florida school district. CONCLUSION: Findings from the formative research led to the creation and pre-testing of five potential campaign brands. The campaign slogan that tested best with the target audience emphasized the choice youth have to either engage in violent behaviour and suffer the consequences or to 'rise above' physical conflict and reap the benefits.