scholarly journals Fertility Preservation in Children and Adolescents With Cancer: Pilot of a Decision Aid for Parents of Children and Adolescents With Cancer (Preprint)

2018 ◽  
Author(s):  
Catherine Allingham ◽  
Lynn Gillam ◽  
Maria McCarthy ◽  
Margaret Zacharin ◽  
Sadunee Jayasuriya ◽  
...  
Keyword(s):  
Cancer Treatment ◽  
Children And Adolescents ◽  
Fertility Preservation ◽  
Decision Aid ◽  
Information Source ◽  
Web Based ◽  
Decision Regret ◽  
Adolescent Cancer ◽  
Future Fertility ◽  
The Impact

BACKGROUND Future infertility is a significant concern for survivors of childhood and adolescent cancer. Children and adolescents may have the opportunity to undergo fertility preservation (FP) procedures (which preserve gonadal tissue or gametes for future use) prior to the cancer treatment. However, the decision is very complex, as it is often made by parents as proxy decision makers at the time of cancer diagnosis, and is time-sensitive (needing to occur before the cancer treatment begins). Furthermore, FP procedures in children and adolescents are experimental and cannot guarantee future fertility. An uninformed decision may result in future decision regret. OBJECTIVE This study aimed to assess the acceptability, usability, and feasibility of a Web-based FP decision aid (DA) in parents of children and adolescents with cancer and clinicians. Fertility knowledge and decision regret were compared in families who reviewed the DA compared with those who did not. METHODS The Web-based DA was developed according to the International Patient Decision Aid Standards. A cross-sectional study of parents of patients with cancer, who discussed fertility, and clinicians at a tertiary children’s hospital was undertaken. The acceptability, usability, and feasibility of the DA were assessed using a pre-post survey design. Measures included the validated Decision Regret Scale, a purpose-designed fertility-related knowledge scale, questions regarding satisfaction with the DA, and open-ended responses for additional feedback. Furthermore, clinicians involved in FP were also invited to review the DA. RESULTS We enrolled 34 parents and 11 clinicians in this study. Participants who reviewed the DA (15 parents and 11 clinicians) expressed satisfaction with its content and functionality. Parents reported an improved understanding of cancer treatments, infertility, and FP procedures and did not report greater decision regret after DA review. Most parents (13/15, 86%) would recommend the DA to other parents. All clinicians had a consensus that this was a valid and relevant information source for all involved in fertility care. CONCLUSIONS It is an international standard of care to discuss the impact of cancer treatment on fertility before cancer treatment. This is the first fertility DA for parents of children and adolescents with cancer and is found to be relevant and acceptable by parents and clinicians. This DA has the potential to help support parents to make informed fertility-related decisions for their children and adolescents. However, future research is needed to assess the impact of the DA on prospective decision making.

scholarly journals Web-Based Training for Nurses on Shared Decision Making and Prenatal Screening for Down Syndrome: Protocol for a Randomized Controlled Trial

10.2196/17878 ◽  
2020 ◽  
Vol 9 (10) ◽  
pp. e17878
Author(s):  
Alex Poulin Herron ◽  
Titilayo Tatiana Agbadje ◽  
Melissa Cote ◽  
Codjo Djignefa Djade ◽  
Geneviève Roch ◽  
...  
Keyword(s):  
Pregnant Women ◽  
Training Program ◽  
Decision Aid ◽  
Prenatal Screening ◽  
Decision Aids ◽  
Control Group ◽  
Intention To Use ◽  
Shared Decision ◽  
Web Based ◽  
The Impact

Background Pregnant women often find it difficult to choose from among the wide variety of available prenatal screening options. To help pregnant women and their partners make informed decisions based on their values, needs, and preferences, a decision aid and a web-based shared decision making (SDM) training program for health professionals have been developed. In Canada, nurses provide maternity care and thus can train as decision coaches for prenatal screening. However, there is a knowledge gap about the effectiveness of SDM interventions in maternity care in nursing practice. Objective This study aims to assess the impact of an SDM training program on nurses’ intentions to use a decision aid for prenatal screening and on their knowledge and to assess their overall impressions of the training. Methods This is a 2-arm parallel randomized trial. French-speaking nurses working with pregnant women in the province of Quebec were recruited online by a private survey firm. They were randomly allocated (1:1 ratio) to either an experimental group, which completed a web-based SDM training program that included prenatal screening, or a control group, which completed a web-based training program focusing on prenatal screening alone. The experimental intervention consisted of a 3-hour web-based training hosted on the Université Laval platform with 4 modules: (1) SDM; (2) Down syndrome prenatal screening; (3) decision aids; and (4) communication between health care professionals and the patient. For the control group, the topic of SDM in Module 1 was replaced with “Context and history of prenatal screening,” and the topic of decision aids in Module 3 was replaced with “Consent in prenatal screening.” Participants completed a self-administered sociodemographic questionnaire with close-ended questions. We also assessed the participants' (1) intention to use a decision aid in prenatal screening clinical practice, (2) knowledge, (3) satisfaction with the training, (4) acceptability, and (5) perceived usefulness of the training. The randomization was done using a predetermined sequence and included 40 nurses. Participants and researchers were blinded. Intention to use a decision aid will be assessed by a t test. Bivariate and multivariate analysis will be performed to assess knowledge and overall impressions of the training. Results This study was funded in 2017 and approved by Genome Canada. Data were collected from September 2019 to late January 2020. This paper was initially submitted before data analysis began. Results are expected to be published in winter 2020. Conclusions Study results will inform us on the impact of an SDM training program on nurses’ intention to use and knowledge of decision aids for prenatal screening and their overall impressions of the training. Participant feedback will also inform an upgrade of the program, if needed. Trial Registration ClinicalTrials.gov NCT04162288; https://clinicaltrials.gov/ct2/show/NCT04162288 International Registered Report Identifier (IRRID) DERR1-10.2196/17878

scholarly journals Web-Based Training for Nurses on Shared Decision Making and Prenatal Screening for Down Syndrome: Protocol for a Randomized Controlled Trial (Preprint)

2020 ◽  
Author(s):  
Alex Poulin Herron ◽  
Titilayo Tatiana Agbadje ◽  
Melissa Cote ◽  
Codjo Djignefa Djade ◽  
Geneviève Roch ◽  
...  
Keyword(s):  
Pregnant Women ◽  
Training Program ◽  
Decision Aid ◽  
Prenatal Screening ◽  
Decision Aids ◽  
Control Group ◽  
Intention To Use ◽  
Shared Decision ◽  
Web Based ◽  
The Impact

BACKGROUND Pregnant women often find it difficult to choose from among the wide variety of available prenatal screening options. To help pregnant women and their partners make informed decisions based on their values, needs, and preferences, a decision aid and a web-based shared decision making (SDM) training program for health professionals have been developed. In Canada, nurses provide maternity care and thus can train as decision coaches for prenatal screening. However, there is a knowledge gap about the effectiveness of SDM interventions in maternity care in nursing practice. OBJECTIVE This study aims to assess the impact of an SDM training program on nurses’ intentions to use a decision aid for prenatal screening and on their knowledge and to assess their overall impressions of the training. METHODS This is a 2-arm parallel randomized trial. French-speaking nurses working with pregnant women in the province of Quebec were recruited online by a private survey firm. They were randomly allocated (1:1 ratio) to either an experimental group, which completed a web-based SDM training program that included prenatal screening, or a control group, which completed a web-based training program focusing on prenatal screening alone. The experimental intervention consisted of a 3-hour web-based training hosted on the Université Laval platform with 4 modules: (1) SDM; (2) Down syndrome prenatal screening; (3) decision aids; and (4) communication between health care professionals and the patient. For the control group, the topic of SDM in Module 1 was replaced with “Context and history of prenatal screening,” and the topic of decision aids in Module 3 was replaced with “Consent in prenatal screening.” Participants completed a self-administered sociodemographic questionnaire with close-ended questions. We also assessed the participants' (1) intention to use a decision aid in prenatal screening clinical practice, (2) knowledge, (3) satisfaction with the training, (4) acceptability, and (5) perceived usefulness of the training. The randomization was done using a predetermined sequence and included 40 nurses. Participants and researchers were blinded. Intention to use a decision aid will be assessed by a t test. Bivariate and multivariate analysis will be performed to assess knowledge and overall impressions of the training. RESULTS This study was funded in 2017 and approved by Genome Canada. Data were collected from September 2019 to late January 2020. This paper was initially submitted before data analysis began. Results are expected to be published in winter 2020. CONCLUSIONS Study results will inform us on the impact of an SDM training program on nurses’ intention to use and knowledge of decision aids for prenatal screening and their overall impressions of the training. Participant feedback will also inform an upgrade of the program, if needed. CLINICALTRIAL ClinicalTrials.gov NCT04162288; https://clinicaltrials.gov/ct2/show/NCT04162288 INTERNATIONAL REGISTERED REPORT DERR1-10.2196/17878

scholarly journals A Warning Call for Fertility Preservation Methods for Women Undergoing Gonadotoxic Cancer Treatment

Medicina ◽  
2021 ◽  
Vol 57 (12) ◽  
pp. 1340
Author(s):  
Claudia Mehedintu ◽  
Francesca Frincu ◽  
Andreea Carp-Veliscu ◽  
Ramona Barac ◽  
Dumitru-Cristinel Badiu ◽  
...  
Keyword(s):  
Cancer Treatment ◽  
Fertility Preservation ◽  
Ovarian Reserve ◽  
Negative Impact ◽  
Future Fertility ◽  
Negative Effect ◽  
The One

Malignant hematological conditions have recognized an increased incidence and require aggressive treatments. Targeted chemotherapy, accompanied or not by radiotherapy, raises the chance of defeating the disease, yet cancer protocols often associate long-term gonadal consequences, for instance, diminished or damaged ovarian reserve. The negative effect is directly proportional to the types, doses, time of administration of chemotherapy, and irradiation. Additionally, follicle damage depends on characteristics of the disease and patient, such as age, concomitant diseases, previous gynecological conditions, and ovarian reserve. Patients should be adequately informed when proceeding to gonadotoxic therapies; hence, fertility preservation should be eventually regarded as a first-intention procedure. This procedure is most beneficial when performed before the onset of cancer treatment, with the recommendation for embryos or oocytes’ cryopreservation. If not feasible or acceptable, several options can be available during or after the cancer treatment. Although not approved by medical practice, promising results after in vitro studies increase the chances of future patients to protect their fertility. This review aims to emphasize the mechanism of action and impact of chemotherapy, especially the one proven to be gonadotoxic, upon ovarian reserve and future fertility. Reduced fertility or infertility, as long-term consequences of chemotherapy and, particularly, following bone marrow transplantation, is often associated with a negative impact of recovery, social and personal life, as well as highly decreased quality of life.

National survey of physicians practice patterns: Fertility preservation and cancer patients

2009 ◽  
Vol 27 (18_suppl) ◽  
pp. CRA9508-CRA9508 ◽  
Author(s):  
G. Quinn ◽  
S. T. Vadaparampil ◽  
P. Jacobsen ◽  
J. Lee ◽  
J. Lancaster ◽  
...  
Keyword(s):  
Cancer Treatment ◽  
Cancer Patients ◽  
Practice Patterns ◽  
The United States ◽  
Future Research ◽  
Nurse Training ◽  
Educational Materials ◽  
Childbearing Age ◽  
Future Fertility ◽  
The Impact

CRA9508 Background: Addressing the impact of cancer treatment on fertility is a high priority in providing quality cancer care to patients of childbearing age. Evidence suggests less than 50% of patients receive adequate fertility information prior to cancer treatment. This study assessed the practice patterns of physicians and identified perceptions of barriers to communication about fertility. Methods: A 37 item survey was developed by a review of the literature and previous qualitative interviews. A random sample of physicians from the American Medical Association Masterfile was stratified by board specialty related to oncology. Three waves of surveys were distributed across the United States. The domains of the survey included demographics, knowledge, attitudes and practice behaviors related to FP with patients of childbearing age. Results: Of 1,979 physicians identified, a total of 613 physicians completed the survey, yielding a 33% response rate among oncologists. Oncologists with favorable attitudes towards FP were 4.9 times more likely to discuss the impact of cancer treatment on future fertility than those who have unfavorable attitudes. GYN or Medical/Hematological oncologists were 2.1 times more likely than other specialists to report feeling comfortable discussing FP with their patients. The majority of oncologists reported discussing FP with patients and indicated the primary barrier to discussion was a patient too ill to delay treatment. However, less than 25% of oncologists report referring patients for FP and only 38% report knowledge of the ASCO guidelines suggesting oncologists should discuss FP and refer all patients of childbearing age. Less than 25% of physicians surveyed reported distributing educational materials regarding FP. Conclusions: The majority of physicians in this survey report discussing FP; however they are not consulting specialists or providing educational materials to their patients. Future research will include the development of physician and nurse training curricula and interventions to facilitate discussion of FP between physicians and cancer patients. No significant financial relationships to disclose.

Development of a web-based, patient-centered decision aid for oropharyngeal cancer treatment

Oral Oncology ◽  
2021 ◽  
Vol 123 ◽  
pp. 105618
Author(s):  
Elaine O. Bigelow ◽  
Melina J. Windon ◽  
Carole Fakhry ◽  
Ana P. Kiess ◽  
Tanguy Seiwert ◽  
...  
Keyword(s):  
Cancer Treatment ◽  
Oropharyngeal Cancer ◽  
Decision Aid ◽  
Patient Centered ◽  
Web Based

The impact of fertility preservation on the timing of breast cancer treatment, recurrence, and survival

Cancer ◽  
2021 ◽  
Author(s):  
Anna C. Greer ◽  
Andrea Lanes ◽  
Philip D. Poorvu ◽  
Patricia Kennedy ◽  
Ann M. Thomas ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Cancer Treatment ◽  
Fertility Preservation ◽  
Breast Cancer Treatment ◽  
The Impact

scholarly journals Protecting Fertility During Cancer Treatment: Assessing Patients’ and Providers’ Decision-making Needs and Preferences for a Web-based Patient Decision Aid (Preprint)

2020 ◽  
Author(s):  
Aubri Hoffman ◽  
Laura Crocker ◽  
Aakrati Mathur ◽  
Deborah Holman ◽  
June Weston ◽  
...  
Keyword(s):  
Decision Making ◽  
Focus Group ◽  
Fertility Preservation ◽  
Young Women ◽  
Decision Aid ◽  
Ad Hoc ◽  
Unmet Needs ◽  
Patient Decision Aid ◽  
Web Based ◽  
Patient Decision

BACKGROUND As cancer treatments continue to improve, it is increasingly important that reproductive-aged young women have an opportunity to decide whether they want to undergo fertility preservation treatments to try to protect their ability to have a child after cancer. Clinical practice guidelines recommend that providers offer fertility counseling to all young women with cancer, but as few as 12% of women recall discussing fertility preservation. Patients report limited awareness, opportunity, and time to make this complex personal decision. The long-term goal of this program of research is to develop an interactive webbased patient decision aid to improve awareness, access, knowledge, and decision making for all young women with cancer. The International Patient Decision Aid Standards collaboration recommends a formal decisional needs assessment to inform and guide the design of understandable, meaningful, and usable patient decision aid interventions. OBJECTIVE This study assessed providers’ and survivors’ fertility preservation decision-making experiences, unmet needs, and design preferences to inform the development of a web-based patient decision aid. METHODS Semi-structured interviews and an ad hoc focus group assessed current decision-making experiences, unmet needs, and recommendations for a patient decision aid. Two researchers coded and analyzed transcripts using NVIVO. A stakeholder advisory panel guided the study and interpretation of results. RESULTS A total of 51 participants participated in 46 interviews (n=18 providers and 28 survivors) and 1 ad hoc focus group (n=7 survivors). Primary themes included (1) the importance of fertility decisions for survivorship, (2) significant but potentially modifiable barriers to optimal decision making exist, and (3) there is strong support for developing a patient decision aid website. Providers reported needing an intervention that could quickly raise awareness and facilitate timely referrals. Survivors reported needing understandable information and help with managing uncertainty, costs, and pressures. Design recommendations included: providing tailored information (eg, by age and cancer type), optional interactive features, and multimedia delivery at multiple time points, preferably outside the consultation. CONCLUSIONS Decision making about fertility preservation is an important step in providing high-quality comprehensive cancer care, and a priority for many survivors’ optimal quality of life. Decision support interventions are needed to address gaps in care and help women quickly navigate towards an informed, values-congruent decision. Survivors and providers support developing a patient decision aid website to make information directly available to women outside of the consultation and to provide self-tailored content according to women’s clinical characteristics and their information-seeking and deliberative styles. CLINICALTRIAL Not applicable

A survey study of knowledge, attitude, and practice regarding oncofertility among health professionals in Uruguay.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24041-e24041
Author(s):  
Dana Kimelman ◽  
Maria Clara Rodriguez Palleiro ◽  
Matilde Boada
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Cancer Treatment ◽  
Cancer Patients ◽  
Fertility Preservation ◽  
Health Care Professionals ◽  
Oocyte Cryopreservation ◽  
Survey Study ◽  
Future Fertility ◽  
Geographical Regions

e24041 Background: Oncofertility is a field dedicated to preserve fertility of children, adolescents, and young cancer patients'. For young cancer patients, fertility preservation (FP) has become an important concern that needs to be addressed before cancer treatment. This study aimed to evaluate the general knowledge, attitudes, and practice towards FP and pregnancy-related issues of health care professionals in Uruguay. Methods: We conducted an online survey distributed to physicians from multidisciplinary areas (Oncology, Radiotherapy, Hematology, Pediatric hematology-oncology, Gynecology, Urology) involved in daily medical care to young cancer patients. Results: 208 physicians from 16 geographical regions completed the survey. 53 % of the subjects were less than 40 years old, and 77.7% identified themselves as women. Most of the responders (99 %) agreed that FP counseling should be part of cancer treatment; however, only 49 % discusses FP and refers their patients in their daily clinical practice. Regarding referral of patients to an Oncofertility specialist, 36% do it occasionally, and 15% have never referred. Half of the responders (50%) stated that they know the available FP options for young cancer patients, 49% have an idea, and 1% are not aware. 37 % of participants consider that FP treatments would delay cancer treatment initiation, impacting their attitude towards FP recommendation and referral. Regarding FP coverage, 51.7 % were not aware of financial coverage for fertility preservation treatments availableness. 57% of physicians directly involved in breast cancer (BC) care agreed with the statement that oocyte cryopreservation is safe in BC patients with positive hormonal receptors, 35% are not sure, and 8% believe it is not safe, 46% believe pregnancy is safe after BC, 34% is not sure, while 20% consider it is unsafe. Conclusions: This study demonstrates the need to increase FP awareness in Uruguayan health care professionals. Moreover, several misconceptions on FP and pregnancy-related issues in BC patients have been identified. Focused research and education to improve physicians' knowledge and adherence to available international guidelines are urgently required to improve the care of young cancer patients who desire future fertility. Key Words: Oncofertility, fertility preservation, oocyte cryopreservation, breast cancer, pregnancy.

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