Transitioning to telehealth during the coronavirus disease 2019 pandemic: Perspectives from partners of women with cystic fibrosis and healthcare providers

Objectives Cystic fibrosis is a chronic, genetic disease that primarily affects the respiratory system. The coronavirus disease 2019 pandemic has altered how people with cystic fibrosis receive healthcare. This paper explores the perceptions of cystic fibrosis healthcare providers and partners of women with cystic fibrosis regarding the use of telehealth in routine cystic fibrosis healthcare in the US. Methods As part of a larger study examining fertility counseling for women with cystic fibrosis, we conducted qualitative, semi-structured interviews. Participants included partners of women with cystic fibrosis (n = 20) and cystic fibrosis healthcare providers (n = 20). We completed the interviews before and during the global coronavirus disease 2019 pandemic. We analyzed the data using thematic analysis. Results When in-person healthcare could not be achieved safely, partners and healthcare providers found new value in telehealth. Three themes emerged: (1) increased connection between healthcare team and family, (2) increased efficiency of healthcare appointments, and (3) improved interdisciplinary collaboration. Partners found that telehealth allowed for more engagement in their significant others’ healthcare. Providers reported enhanced efficiency and opportunities for collaboration across specialties that improved healthcare delivery and care coordination. Discussion Results from this study highlighted the positive value of telehealth. Telehealth presents as a potential alternative to delivering outpatient care for people with chronic illnesses beyond the pandemic

Fertility Counseling in Survivors of Cancer in Childhood and Adolescence: Time for a Reappraisal?

Genetic predisposition could have an important role in the pathogenesis of cancers in children and adolescents. A recent study by our group showed that, among female survivors of cancers in childhood and adolescence, the proportion of cases involving a possible genetic predisposition was sizable (at least one in five). Our sample is too small to be representative of the general population, but it gave us an opportunity to reappraise this issue. Women with a genetic predisposition can transmit the risk of cancer to their offspring, and their awareness of this may influence their reproductive and fertility preservation choices. In our experience, a predisposition to cancer receives little attention in the fertility counseling and decision-making process unless a patient already has a definitive molecular diagnosis of a hereditary cancer syndrome. We feel it is essential to empower women on this issue, particularly as there are ways to overcome the problem, including preimplantation genetic testing (PGT-M) in definitively diagnosed cases, egg donation and adoption. In the context of fertility counseling for survivors of cancer in childhood and adolescence who have reached adulthood, the risk of transmitting a predisposition to cancer should be discussed with patients, if relevant and desired.

Decisional Regret in Female Oncofertility Decision Making—An Integrative Narrative Review

It is well established that fertility is an important issue for young women with cancer at reproductive age, as many have not initiated or completed their parenthood goals when diagnosed. Because cancer treatments may impair fertility, women face fertility decisions that are often complex and surrounded by uncertainty. This may put patients at risk for psychological distress and the experience of regret regarding decisions made at diagnosis, which may be associated with a negative impact on women’s QoL. This narrative review addresses current knowledge about decisional regret regarding fertility preservation decisions in adult female cancer patients at reproductive age. Electronic searches were conducted on Pubmed database for articles published in English from 1 January 2000 to 1 July 2021 that assessed decisional regret following fertility decisions in young women diagnosed at childbearing age. Of the 96 articles identified, nine provided information on decisional regret regarding fertility decisions. Studies reported that, overall, decisional regret regarding oncofertility decisions was low. Factors associated with the experience of decisional regret were patients’ perceived quality and satisfaction with fertility counseling received, the decision to undergo fertility preservation, desire for children and decisional conflict. Health providers should be aware of the factors that are potentially modifiable and prone to improvement in order to reduce decisional regret. All efforts should be made to improve availability of and access to tailored high quality fertility counseling and fertility preservation. Given the growing evidence that decision aids (DAs) are effective in increasing knowledge and reducing decisional conflict and regret, their use in a routine and timely manner to complement fertility counseling is recommended.

How can fertility counseling be implemented for every newly diagnosed pediatric patient facing gonadotoxic treatment?-A single-center experience

Since the survival rates of pediatric patients undergoing cancer treatment or hematopoietic stem cell transplantation (HSCT) have increased rapidly in recent decades, the late effects of treatment are now an important focus of patient care. Access to fertility preservation (FP) procedures as well as their financing differs considerably across Europe. However, some countries in Europe have recently changed the legal basis for financing FP procedures; therefore, the implementation of structures is mandatory to give patients access to FP. In this prospective cohort study, we characterized the process for establishing pediatric fertility counseling, including the development of an in-house standard procedure for recommendations regarding FP with potentially gonadotoxic treatment and valuating data from all FP counseling sessions. All data concerning patient characteristics (pubertal status, disease group) and recommendation of FP measures were prospectively collected and adoption of FP measures analyzed. Prior to the establishment of a structured process for FP in our pediatric oncology and stem cell transplantation center, there was no standardized FP counseling. We demonstrate that with the establishment of an inhouse standard procedure, it is possible to give consistent yet individualized FP counseling to approximately 90% of our patients facing gonadotoxic treatment, counseling over 200 patients between 2017 and 2019. This pilot study could potentially be adapted in other pediatric hematology, oncology, and stem cell transplantation centers to allow a more standardized handling of FP counseling for all patients facing gonadotoxic treatment.

Clinical and demographical factors associated with fertility counseling in colorectal cancer.

e24047 Background: The incidence of colorectal cancer in patients younger than 50 has been increasing over the past 2 decades. This demographic shift has important implications for survivorship care, in particular regarding issues of future fertility especially in light of USPSTF’s recommendation for colorectal cancer screening to begin at 45. Although ASCO has longstanding recommendations for fertility counseling in patients with cancer, the rates of fertility counseling in younger patients with colorectal cancer are unknown. Methods: Records for new patient visits for colorectal cancer in patients younger than age 55 in a large academic cancer center between 2012 and 2019 were queried for patient demographics, disease characteristics, and documentation of fertility counseling. Associations between demographic/clinical characteristics and fertility counseling were explored. Univariate and multivariable logistical regression analyses were performed using SAS v9.4. Results: Among 194 patients who met inclusion criteria, 39.2% of patients were female, 10.4% were African American, 31.4% had rectal cancer, and 69.6% were treated with curative intent. Approximately 14.5% of patients had Medicaid insurance. Age ranged from 22-55. The overall rate of fertility counseling among all patients was 15.5%. Of these patients, 43.3% were male. In univariate analysis, age less than or equal to 40 (p < 0.01), female gender (p = 0.03) and curative intent therapy (p = 0.03) were associated with fertility counseling. These factors were again statistically significant in multivariate analysis: age < 40, female, and curative intent therapy (Table). Race, stage of cancer, insurance status, prior exposure to chemotherapy, year of diagnosis and colon vs rectal cancer were not associated with counseling. Conclusions: The rate of fertility counseling was very low among patients with colorectal cancer, and exceptionally low among men. Despite changes in the demographics of colorectal cancer, it does not appear that appropriate changes have been made in fertility counseling. Increases in fertility counseling were not seen in more recent years despite recognition of increasing incidence in younger patients. Additional studies to identify barriers to counseling and strategies to improve survivorship care are urgently needed.[Table: see text]