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Improving Multi-site Interaction Through Remote Learning Technology: Report from a Training Program to Increase Underrepresented Undergraduate and Medical Students in Health Disparities Research

Sims, Z'Kera; Cousin, Lakeshia; Suppiah, Vivekka; Stanley, Nathanael; Li, Jiannong; Quinn, Gwendolyn; Martinez, Ursula; Zea, Arnold H; Simmons, Vani N; Meade, Cathy D; Tsien, Fern; Gwede, Clement K
Since 2018, we have evaluated the effectiveness of various teaching technologies for training young investigators on translational research in cancer health disparities. The Southeast Partnership for Improving Research and Training in Cancer Health Disparities (SPIRIT-CHD) unites Moffitt Cancer Center and the Louisiana State University Health Sciences Center. One of the main components of the SPIRIT-CHD is the Cancer Research Education Program (CREP) for training undergraduate and medical students from underrepresented backgrounds. The CREP utilizes a web-based didactic curriculum to engage students at both institutions in biobanking, precision medicine, and cancer health disparities topics. We report experiences from our cross-institutional cancer education program, specifically evaluating the cohorts' satisfaction and learning gains using various communication technologies and instructional approaches. Trainees completed a survey with questions evaluating the curriculum and technology. Trainees reported satisfaction with the flipped classroom model (FCM) content and overall program (mean score = 3.2, SD = 0.79), and would recommend the program to peers. Yet, despite improved program delivery, trainees felt interaction between the two sites (mean score = 1.5, SD = 0.85) and engagement with faculty (mean score = 2.80, SD = 1.14) could be improved. The technology with the highest reported use was e-mail, with a mean score of 4.6 (SD = 0.52). LinkedIn and Twitter had the lowest frequency of use with mean scores at 1.90 (SD = 0.99) and 1.30 (SD = 1.34). Our study highlights the successes and challenges of remote learning using technology to increase interaction and engagement among trainees and faculty in a multi-site cancer research training program.
PMID: 33860443
ISSN: 1543-0154
CID: 4897902

Navigating parent-child disagreement about fertility preservation in minors: scoping review and ethical considerations

Bayefsky, Michelle; Vieira, Dorice; Caplan, Arthur; Quinn, Gwendolyn
BACKGROUND:Offering fertility preservation (FP) prior to gonadotoxic therapy, including cancer care and gender-affirming treatment, is now considered standard of care. Periodically, parents and children disagree about whether to pursue FP. However, it is unknown how often this occurs and how disagreement is handled when it arises. Moreover, there is no clear guidance on how to resolve these difficult situations. OBJECTIVE AND RATIONALE/OBJECTIVE:The purpose of this scoping review is to provide an overview of available research evidence about parent-child disagreement regarding FP in order to establish that disagreement occurs in practice, understand the basis for disagreement and explore suggestions for how such disputes could be resolved. Based on our findings, we offer a discussion of the ethical principles at stake when disagreement occurs, which can be used to guide clinicians' approaches when these challenging scenarios present. SEARCH METHODS/METHODS:A comprehensive literature search was run in several databases, including PubMed/Medline, Embase and the Cochrane Library. The search was performed in February 2021 and updated in August 2021. Articles were included in the final review if they discussed how parents or children wanted their views on FP taken into account, presented evidence that parent-child discordance regarding FP exists, discussed how to handle disagreement in a particular case or offered general suggestions for how to approach parent-child discordance about FP. Studies were excluded if the patients were adult only (age 18 years and older), pertained to fertility-sparing treatments (e.g. gonad shielding, gonadopexy) rather than fertility-preserving treatments (e.g. testicular tissue cryopreservation, ovarian tissue cryopreservation, oocyte cryopreservation or sperm cryopreservation) or explored the views of clinicians but not patients or parents. Meta-synthesis was used to synthesize and interpret data across included studies and thematic analysis was used to identify common patterns and themes. OUTCOMES/RESULTS:In total, 755 publications were screened, 118 studies underwent full-text review and 35 studies were included in the final review. Of these studies, 7 discussed how parents or children wanted their opinions to be incorporated, 11 presented evidence that discordance exists between parents and children regarding FP, 4 discussed how disagreement was handled in a particular case and 21 offered general suggestions for how to approach parent-child disagreement. There was a range of study designs, including quantitative and qualitative studies, case studies, ethical analyses and commentaries. From the thematic analysis, four general themes regarding FP disagreement emerged, and four themes relating to the ethical principles at stake in parent-child disagreement were identified. The general themes were: adolescents typically desire to participate in FP decision-making; some parents prefer not to involve their children; minors may feel more favorably about FP than their parents; and transgender minors and their parents may have unique reasons for disagreement. The ethical principles that were identified were: minor's best interest; right to an open future; minor's autonomy; and parental autonomy. WIDER IMPLICATIONS/CONCLUSIONS:This study offers an overview of available research on the topic of parent-child disagreement regarding FP and discusses the ethical considerations at stake when disagreement occurs. The findings can be used to inform guidance for clinicians presented with FP disagreement in practice.
PMID: 35468184
ISSN: 1460-2369
CID: 5205482

A synopsis of global frontiers in fertility preservation

Ataman, L M; Laronda, M M; Gowett, M; Trotter, K; Anvari, H; Fei, F; Ingram, A; Minette, M; Suebthawinkul, C; Taghvaei, Z; Torres-Vélez, M; Velez, K; Adiga, S L; Anazodo, A; Appiah, L; Bourlon, M T; Daniels, N; Dolmans, M M; Finlayson, C; Gilchrist, R B; Gomez-Lobo, V; Greenblatt, E; Halpern, J A; Hutt, K; Johnson, E K; Kawamura, K; Khrouf, M; Kimelman, D; Kristensen, S; Mitchell, R T; Moravek, M B; Nahata, L; Orwig, K E; Pavone, M E; Pépin, D; Pesce, R; Quinn, G P; Rosen, M P; Rowell, E; Smith, K; Venter, C; Whiteside, S; Xiao, S; Zelinski, M; Goldman, K N; Woodruff, T K; Duncan, F E
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.
PMCID:9307970
PMID: 35870095
ISSN: 1573-7330
CID: 5279432

Private Conversations, Public Debate [Comment]

Nippita, Siripanth; Jung, Christina; Oviedo, Johana D; Quinn, Gwendolyn P
PMID: 35917426
ISSN: 1536-0075
CID: 5287672

Correction to: A synopsis of global frontiers in fertility preservation

Ataman, L M; Laronda, M M; Gowett, M; Trotter, K; Anvari, H; Fei, F; Ingram, A; Minette, M; Suebthawinkul, C; Taghvaei, Z; Torres-Vélez, M; Velez, K; Adiga, S K; Anazodo, A; Appiah, L; Bourlon, M T; Daniels, N; Dolmans, M M; Finlayson, C; Gilchrist, R B; Gomez-Lobo, V; Greenblatt, E; Halpern, J A; Hutt, K; Johnson, E K; Kawamura, K; Khrouf, M; Kimelman, D; Kristensen, S; Mitchell, R T; Moravek, M B; Nahata, L; Orwig, K E; Pavone, M E; Pépin, D; Pesce, R; Quinn, G P; Rosen, M P; Rowell, E; Smith, K; Venter, C; Whiteside, S; Xiao, S; Zelinski, M; Goldman, K N; Woodruff, T K; Duncan, F E
PMID: 35920992
ISSN: 1573-7330
CID: 5288072

Quality of Life in Underrepresented Cancer Populations [Editorial]

Quinn, Gwendolyn P; Schabath, Matthew B
This series of six articles (five original articles and one review) is presented by international leaders in health disparities research [...].
PMCID:9325309
PMID: 35884476
ISSN: 2072-6694
CID: 5276452

Patient and clinician experiences with cross-border reproductive care: A systematic review

McLean, Laura; Ros, Stephanie T; Hollond, Calder; Stofan, Jordan; Quinn, Gwendolyn P
OBJECTIVES/OBJECTIVE:This review analyzes the experiences of patients and clinicians with regards to international cross-border reproductive care (CBRC) for the purpose of conception. METHODS:Electronic databases PubMed, Embase, Web of Science, and Scopus were searched using 'medical tourism' AND 'assisted reproductive technology' from 1978 to 2020. RESULTS:Predominant patient motivators for CBRC were cost and legality of assisted reproduction technology (ART) in one's home country, followed by cultural factors like shared language, religion, and cultural familiarity. Clinicians suggested global laws for CBRC would reduce the potential for exploitation of vulnerable populations but believed the enactment of international regulations unlikely and, even if enacted, difficult to enforce. CONCLUSIONS:While patient and clinician experiences with CBRC varied, patients frequently cited financial and legal reasons for pursuing CBRC, while many providers had concern for the patient's safety. CLINICAL PRACTICE IMPLICATIONS/UNASSIGNED:This review recommends clinicians involved in family planning counsel patients seeking treatment abroad by: (i) informing patients of the risks and benefits of treatment abroad, (ii) establishing guidelines and standards for clinicians on resuming patient care post-CBRC, and (iii) creating a directory of reputable CBRC clinicians and experts.
PMID: 35339328
ISSN: 1873-5134
CID: 5200772

Attitudes, knowledge and practice behaviours of oncology health care professionals towards lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) patients and their carers: A mixed-methods study

Ussher, Jane M; Perz, Janette; Allison, Kimberley; Power, Rosalie; Hawkey, Alexandra; Dowsett, Gary W; Hickey, Martha; Parton, Chloe; McDonald, Fiona E J; Davis, Ian D; Quinn, Gwendolyn P; Boydell, Katherine; Robinson, Kerry H; Chambers, Suzanne; Anazodo, Antoinette
OBJECTIVE:There is growing recognition that health care professionals (HCPs) and policy makers are insufficiently equipped to provide culturally competent care to lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) cancer patients and their families. We examined HCP attitudes, knowledge, and practices regarding LGBTQI cancer care using a mixed-methods research design. METHOD/METHODS:Surveys were completed by 357 oncology HCPs in nursing (40%), medical (24%), allied health (19%), and clinical leadership roles (11%); 48 of the surveyed HCPs were interviewed. RESULTS:Most HCPs reported being comfortable treating LGBTQI patients, but reported low levels of confidence and knowledge and systemic barriers to LGBTQI cancer care. Most wanted more education and training, particularly on trans and gender-diverse people (TGD) and those born with intersex variations. CONCLUSION/CONCLUSIONS:Education of HCPs and health system changes are required to overcome barriers to the provision of culturally competent cancer care for LGBTQI patients. PRACTICE IMPLICATIONS/CONCLUSIONS:These findings reinforce the need for inclusion of LGBTQI content in HCP education and professional training curricula, and institutional support for LGBTQI-inclusive practice behaviours. This includes administrative and visual cues to signal safety of LGBTQI patients within cancer care, facilitating inclusive environments, and the provision of tailored patient-centred care.
PMID: 34998663
ISSN: 1873-5134
CID: 5118142

Fertility Testing Knowledge and Attitudes in Male Adolescents and Young Adults with SCD and Their Caregivers: A Pilot Study

Nahata, Leena; Stanek, Charis; Theroux, Charleen I; Olsavsky, Anna Lorraine; Quinn, Gwendolyn P; Creary, Susan E
PMID: 35442421
ISSN: 2473-9537
CID: 5218352

Can cell-free DNA (cfDNA) testing alleviate psychological distress in early miscarriage? A commentary

Zayyad, Shadin; Liang, Renee; Winkel, Abigail Ford; Keefe, David L; Quinn, Gwendolyn P
BACKGROUND:Psychological, emotional, and mental distress affects many patients who experience early pregnancy loss (EPL). A common concern is that the patient's actions or choices caused the loss. Understanding the cause of EPL may improve the distress of EPL patients and their partners. Chromosomal abnormalities leading to a significant portion of EPL. Cell-free DNA (cfDNA) testing, a non-invasive test providing high quality information about the chromosomal makeup of a fetus, may offer assurance that a fetal abnormality caused the loss, and provide more certainty or closure in processing EPL. CfDNA may be a useful adjunct to patient-centered care in the setting of EPL. This commentary explores the possibility of cfDNA testing in lessening the emotional distress that often accompanies EPL. METHODS:The peer reviewed literature was explored for manuscripts addressing (1) the potential for cfDNA serum testing for patients experiencing EPL and screening products of conception to determine the cause of EPL; and/or (2) the impact that information might have on the psychological morbidity of EPL for patients and their partners. Themes generated from extracted data were used to generate key questions for future research. RESULTS:Preliminary findings suggest fetal fraction values are instrumental in the success of cfDNA testing, and a successful cfDNA testing experience can have a positive impact on patients. CONCLUSIONS:Ultimately, we conclude cfDNA testing could have a positive impact in patient care and improve the well-being of patients undergoing the emotional toll of EPL by reducing feelings of guilt and providing closure to those who learn the loss was associated with chromosomal abnormality. Further trials and studies that explore the intersection of mental health of EPL on patients should explore the efficacy of cfDNA testing as an adjunct to patient-centered care in these cases.
PMID: 35648322
ISSN: 1573-7330
CID: 5249662