scholarly journals Development and Pilot Testing of the Transgender and Gender Diverse Fertility Preservation Knowledge Scale

2021 ◽  
Author(s):  
Denise Rivera ◽  
Angela Jukkala ◽  
Katherine Mistretta ◽  
Willa Starke
Keyword(s):  
Decision Making ◽  
Fertility Preservation ◽  
Treatment Decision ◽  
Patient Centered ◽  
Cross Sectional ◽  
Decision Regret ◽  
Gender Diverse ◽  
Healthcare Decision Making ◽  
And Gender ◽  
Knowledge Scale

Little is known about fertility preservation within the TGD community. Few receive adequate counseling placing them at risk for decision regret. The goal of this project was to develop, and pilot test the Transgender Fertility Preservation Knowledge Scale (TFPKS) to support the development and evaluation of health education resources. A community engaged; cross sectional retrospective design was used. Participants (n=189) provided information describing demographics, healthcare decision-making preferences, experiences/knowledge of fertility preservation, and treatment decision regret. The sample included 189 TGD adults. Most were white and aged 26-35 (33.3%) and not offered a consultation (73.0%). Many (41.2%) report they would have participated if offered. Knowledge regarding fertility preservation to support this desire was low. Most participants identified a patient-centered (69.4%) decision making preference. Much remains to address the healthcare inequities within the TGD population regarding fertility preservation. Overall participants had low levels of knowledge to support decision making. Further, healthcare system and individual barriers to fertility preservation remain prevalent. A foundational step towards addressing these disparities, is the identification of a valid and reliable instrument to measure TGD knowledge of fertility preservation.

scholarly journals ACCESS, BARRIERS, AND REGRET SURROUNDING FERTILITY PRESERVATION AMONG TRANSGENDER AND GENDER DIVERSE INDIVIDUALS

2020 ◽  
Vol 113 (4) ◽  
pp. e26-e27
Author(s):  
Nina Vyas ◽  
Christopher Douglas ◽  
Chris Mann CSW ◽  
Amy K. Weimer ◽  
Molly M. Quinn
Keyword(s):  
Fertility Preservation ◽  
Access Barriers ◽  
Gender Diverse ◽  
And Gender

scholarly journals Why do Older Women with Invasive Breast Cancer Avoid Surgery? A Qualitative Analysis of Factors Influencing the Decision of Patients and Physicians

2021 ◽  
Author(s):  
Fernando A. Angarita ◽  
Ethan Hoppe ◽  
Gary Ko ◽  
Justin Lee ◽  
Danny Vesprini ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Decision Making ◽  
Older Women ◽  
Invasive Breast Cancer ◽  
Treatment Decision ◽  
Patient Centered ◽  
Treatment Decision Making ◽  
Cancer Specialists

Abstract Purpose: Limited data exists about why older women (≥70 years old) with breast cancer avoid surgery. This study aimed to identify physician- and patient-perceived attitudes that influence the decision to avoid surgery among older women with invasive breast cancer.Methods: Semi-structured in-depth interviews were conducted with multidisciplinary breast cancer specialists and with older women with breast cancer who declined surgery. Transcripts were iteratively coded using a theoretical framework to guide identification of common themes. Thematic comparison was performed between patients and physicians. Results: Ten breast cancer specialists and eleven patients participated. Physicians believed older women declined surgery because they did not perceive their breast cancer as a life-threatening ailment compared to other medical comorbidities. Physicians did not discuss breast reconstruction, as it was perceived to be unimportant. Treatment side effects, length of treatment, impact on quality of life, and minimal survival benefit strongly influenced a patient’s decision to decline surgery. Patients valued independence and quality of life over quantity of life. Patients felt empowered to participate in the decision-making process but appreciated having support. Both groups had congruent beliefs with respect to age impacting treatment decision, cosmesis playing a minor factor in treatment decisions, and importance of quality of life; however, they were discordant in their perceptions about the amount of support that patients have from their families.Conclusion: The decision to avoid surgery in older women stems from a variety of individual beliefs. Acknowledging patient values early in treatment planning may facilitate a patient-centered approach to treatment decision making.

scholarly journals SUN-039 Estradiol Dose and Concentrations in Transfeminine Individuals

2020 ◽  
Vol 4 (Supplement_1) ◽  
Author(s):  
Brendan J Nolan ◽  
Adam Brownhill ◽  
Ingrid Bretherton ◽  
Peggy Wong ◽  
Susan Fox ◽  
...  
Keyword(s):  
Position Statement ◽  
Target Range ◽  
Estradiol Valerate ◽  
Consensus Guidelines ◽  
Cross Sectional ◽  
Care Clinic ◽  
Gender Diverse ◽  
And Gender ◽  
Sectional Analysis ◽  
Estradiol Concentration

Abstract Background: Feminizing hormone therapy with estradiol is used to align an individual’s physical characteristics with their gender identity. Australian expert consensus guidelines (1) recommend targeting estradiol concentrations of 250-600 pmol/L (68-163 pg/mL) based on local cross-sectional data (2). We aimed to establish the proportion of individuals achieving estradiol concentrations in consensus guidelines. Methods: A retrospective cross-sectional analysis was performed of transfeminine individuals attending a primary or secondary care clinic in Melbourne, Australia who were prescribed oral estradiol valerate for at least 6 months and had estradiol dose and concentration available. Estradiol concentration was measured by immunoassay. Outcomes were (1) proportion of individuals achieving target estradiol concentrations and (2) influence of estradiol dose and BMI on estradiol concentrations. Results: 259 individuals (median age 25.8(IQR 21.9,33.5) years)) had data available for analysis. Median duration of estradiol therapy was 24(15,33) months. Median estradiol concentration was 328(238,434) pmol/L (89(65,118) pg/mL) on 6(4,8) mg estradiol valerate. 172 (66%) individuals had estradiol concentrations within the target range recommended in consensus guidelines. 70 (27%) individuals had estradiol concentrations below target, and 17 (7%) above target. There was a weak positive correlation between estradiol dose and estradiol concentration (r=0.156, p=0.012). There was no correlation between BMI and estradiol concentration achieved (r=-0.063, p=0.413). Conclusions: 66% of individuals achieved estradiol concentration recommended in consensus guidelines with a relatively high oral estradiol dose. There was significant interindividual variability. Estradiol concentration should be interpreted in conjunction with clinical features of feminization and weighed against potential risks of escalating estradiol dose. References 1. Cheung AS, Wynne K, Erasmus J, Murray S, Zajac JD. Position statement on the hormonal management of adult transgender and gender diverse individuals. Med J Aust 2019; 211:127-133 2. Angus L, Leemaqz SY, Ooi O, Cundill P, Silberstein N, Locke P, Zajac JD, Cheung AS. Cyproterone acetate or spironolactone in lowering testosterone concentrations for transgender individuals receiving estradiol therapy. Endocr Connect 2019

Financial distress, communication, and cancer treatment decision making: Does cost matter?

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 6506-6506 ◽  
Author(s):  
Yousuf Zafar ◽  
Amy Pickar Abernethy ◽  
James A Tulsky ◽  
Peter A Ubel ◽  
Deborah Schrag ◽  
...  
Keyword(s):  
Decision Making ◽  
Cancer Treatment ◽  
Financial Distress ◽  
Private Insurance ◽  
Treatment Decision ◽  
Cross Sectional Study ◽  
Median Income ◽  
Incurable Cancer ◽  
Cross Sectional ◽  
Treatment Decision Making

6506 Background: Financial distress (FD) increases the burden of living with cancer. Even insured patients may experience considerable FD, but little is known about whether patients want to include cost discussions in treatment decision-making. Methods: This is an ongoing cross-sectional study of insured adults with solid tumors on anticancer therapy for ≥1 month. Consecutive patients were surveyed, in person, at a referral center and 3 rural oncology clinics. Participants were asked about FD (via a validated measure), out-of-pocket (OOP) costs, discussion of costs with their doctor, and decision-making. Medical records were reviewed for disease and treatment data. Logistic regression assessed the relationship between FD and cost communication. Results: 119 participants (85% response) had a median age of 60 years (range 27-86). 54% were men, 29% non-white, and 96% completed high school. 81% had incurable cancer. 58% had private insurance. Median income was $50,000/yr. Median OOP costs were $480/mo. The mean FD score (6.7, SD 2.5) corresponded to moderate FD. 19% reported high/overwhelming FD. Overall, 48% (n=57) expressed any desire to discuss costs with their doctor, but only 21% (n=25) had actually done so. Of the 19% with highest FD, 36% (n=8) had discussed costs with a doctor, and 68% (n=15) expressed any desire to discuss costs. The most common reasons for not discussing costs with doctors were: “no problems with costs” (n=47); “want best care regardless of cost” (n=36); and “doctors shouldn’t have to worry about costs” (n=19). Of those who discussed costs with their doctor, 48% (n=12) felt the discussion helped decrease costs. 54% (n=64) wanted their doctors to account for costs in cancer treatment decision-making; 20% (n=24) always wanted costs considered in decision-making. High FD was the only variable associated with greater willingness to discuss costs (adjusted OR 2.81; 95%CI 1.05-7.50; p=0.04). Conclusions: FD was prevalent among insured cancer patients. A large proportion wanted costs discussed with doctors and included in treatment decision-making. Discussing finances may lower costs, but the discussion rarely occurs. Communication and decision-making present a potential focus for intervening on FD.

Shared Treatment Decision Making: What Does It Mean to Physicians?

2003 ◽  
Vol 21 (5) ◽  
pp. 932-936 ◽  
Author(s):  
Cathy A. Charles ◽  
Tim Whelan ◽  
Amiram Gafni ◽  
Andy Willan ◽  
Sylvia Farrell
Keyword(s):  
Decision Making ◽  
Early Stage ◽  
Treatment Options ◽  
Treatment Decision ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Conceptual Tool ◽  
Specific Patient ◽  
Treatment Decision Making ◽  
Treatment Benefits

Purpose: Physicians are urged to practice shared treatment decision making (STDM), yet this concept is poorly understood. We developed a conceptual framework describing essential characteristics of a shared approach. This study assessed the degree of congruence in the meanings of STDM as described in the framework and as perceived by practicing physicians. Methods: A cross-sectional survey questionnaire was mailed to eligible Ontario medical and radiation oncologists and surgeons treating women with early-stage breast cancer. Open-ended and structured questions elicited physicians’ perceptions of shared decision making. Results: Most study physicians spontaneously described STDM using characteristics identified in the framework as essential to this concept. When presented with clinical examples in which the decision-making roles of physicians and patients were systematically varied, study physicians overwhelmingly identified example 4 as illustrating a shared approach. This example was deliberately constructed to depict STDM as defined in the framework. In addition, more than 85.0% of physicians identified as important to STDM specific patient and physician roles derived from the framework. These included the following: the physician gives information to the patient on treatment benefits and risks; the patient gives information to the physician about her values; the patient and physician discuss treatment options; both agree on the treatment to implement. Conclusion: Substantial congruence was found between the meaning of STDM as described in the framework and as perceived by study physicians. This supports use of the framework as a conceptual tool to guide research, compare different treatment decision-making approaches, clarify the meaning of STDM, and enhance its translation into practice.

scholarly journals Treatment Decision Regret Among Long-Term Survivors of Localized Prostate Cancer: Results From the Prostate Cancer Outcomes Study

2017 ◽  
Vol 35 (20) ◽  
pp. 2306-2314 ◽  
Author(s):  
Richard M. Hoffman ◽  
Mary Lo ◽  
Jack A. Clark ◽  
Peter C. Albertsen ◽  
Michael J. Barry ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Decision Making ◽  
Treatment Decision ◽  
Localized Prostate Cancer ◽  
Factors Associated ◽  
Decision Regret ◽  
Long Term Survivors

Purpose To determine the demographic, clinical, decision-making, and quality-of-life factors that are associated with treatment decision regret among long-term survivors of localized prostate cancer. Patients and Methods We evaluated men who were age ≤ 75 years when diagnosed with localized prostate cancer between October 1994 and October 1995 in one of six SEER tumor registries and who completed a 15-year follow-up survey. The survey obtained demographic, socioeconomic, and clinical data and measured treatment decision regret, informed decision making, general- and disease-specific quality of life, health worry, prostate-specific antigen (PSA) concern, and outlook on life. We used multivariable logistic regression analyses to identify factors associated with regret. Results We surveyed 934 participants, 69.3% of known survivors. Among the cohort, 59.1% had low-risk tumor characteristics (PSA < 10 ng/mL and Gleason score < 7), and 89.2% underwent active treatment. Overall, 14.6% expressed treatment decision regret: 8.2% of those whose disease was managed conservatively, 15.0% of those who received surgery, and 16.6% of those who underwent radiotherapy. Factors associated with regret on multivariable analysis included reporting moderate or big sexual function bother (reported by 39.0%; OR, 2.77; 95% CI, 1.51 to 5.0), moderate or big bowel function bother (reported by 7.7%; OR, 2.32; 95% CI, 1.04 to 5.15), and PSA concern (mean score 52.8; OR, 1.01 per point change; 95% CI, 1.00 to 1.02). Increasing age at diagnosis and report of having made an informed treatment decision were inversely associated with regret. Conclusion Regret was a relatively infrequently reported outcome among long-term survivors of localized prostate cancer; however, our results suggest that better informing men about treatment options, in particular, conservative treatment, might help mitigate long-term regret. These findings are timely for men with low-risk cancers who are being encouraged to consider active surveillance.

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