Publications by authors named "Alexandria Hahn"

5 Publications

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Effectiveness and cardiac safety of bedaquiline-based therapy for drug-resistant tuberculosis: a prospective cohort study.

Clin Infect Dis 2021 Apr 21. Epub 2021 Apr 21.

Wellcome Centre for Infectious Diseases Research in Africa, Institute of Infectious Disease and Molecular Medicine, and Department of Medicine, University of Cape Town, Cape Town, South Africa.

Background: Bedaquiline improves treatment outcomes in patients with rifampin-resistant TB (RR-TB) but prolongs the QT-interval and carries a black-box warning by the U.S. Food and Drug Administration. The World Health Organization recommends that all patients with RR-TB receive a regimen containing bedaquiline, yet a phase 3 clinical trial demonstrating its cardiac safety has not been published.

Methods: We conducted an observational cohort study of RR-TB patients from 3 provinces in South Africa who received regimens containing bedaquiline. We performed rigorous cardiac monitoring, including electrocardiograms (ECGs) performed in triplicate at four time points during bedaquiline therapy. Participants were followed until the end of therapy or 24 months. Outcomes included final tuberculosis treatment outcome and QT-prolongation, defined as any QTcF>500 ms or an absolute change from baseline (△ QTcF) >60 ms.

Results: We enrolled 195 eligible participants, of whom 40% had extensively drug-resistant (XDR) TB. Most participants (97%) received concurrent clofazimine. 74% of participants were cured or successfully completed treatment, and outcomes did not differ by HIV status. QTcF continued to increase throughout bedaquiline therapy, with a mean increase of 23.7 (SD 22.7) ms from baseline to month 6. Four participants experienced a QTcF>500 ms and 19 experienced a △QTcF>60 ms. Older age was independently associated with QT-prolongation. QT-prolongation was neither more common nor severe in participants receiving concurrent lopinavir-ritonavir.

Conclusions: Severe QT-prolongation was uncommon and did not require permanent discontinuation of either bedaquiline or clofazimine. Close QT-monitoring may be advisable in older patients.
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http://dx.doi.org/10.1093/cid/ciab335DOI Listing
April 2021

A Decision Aid Intervention for Family Building After Cancer: Developmental Study on the Initial Steps to Consider When Designing a Web-Based Prototype.

JMIR Form Res 2021 Jan 22;5(1):e20841. Epub 2021 Jan 22.

Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Manhasset, NY, United States.

Background: An important aspect of patient-centered care involves ensuring that patient-directed resources are usable, understandable, and responsive to patients' needs. A user-centered design refers to an empathy-based framework and an iterative design approach for developing a product or solution that is based on an in-depth understanding of users' needs, values, abilities, and limitations.

Objective: This study presents the steps taken to develop a prototype for a patient resource for young women who have completed treatment for gonadotoxic cancer to support their decision making about follow-up fertility care and family building.

Methods: User-centered design practices were used to develop Roadmap to Parenthood, a decision aid (DA) website for family building after cancer. A multidisciplinary steering group was assembled and input was provided. Guidelines from the International Patient DA Society and the Ottawa Decision Support Framework were used throughout the development process. In addition, guidelines for developing health DAs with respect to patient diversity and health literacy were also followed.

Results: The Roadmap to Parenthood DA website prototype was systematically and iteratively developed. An extensive process of designing and developing solutions from the perspective of the end user was followed. The steps taken included formative work to identify user needs; determining goals, format, and delivery; design processes (eg, personas, storyboards, information architecture, user journey mapping, and wireframing); and content development. Additional design considerations addressed the unique needs of this patient population, including the emotional experiences related to this topic and decision-making context wherein decisions could be considered iteratively while involving a multistep process.

Conclusions: The design strategies presented in this study describe important steps in the early phases of developing a user-centered resource, which will enhance the starting point for usability testing and further design modifications. Future research will pilot test the DA and a planning tool, and evaluate improvement in the decisional conflict regarding family building after cancer. Consistent with a patient-centered approach to health care, the strategies described here may be generalized and applied to the development of other patient resources and clinical contexts to optimize usability, empathy, and user engagement.
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http://dx.doi.org/10.2196/20841DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7864768PMC
January 2021

"Looking at future cancer survivors, give them a roadmap": addressing fertility and family-building topics in post-treatment cancer survivorship care.

Support Care Cancer 2021 Apr 5;29(4):2203-2213. Epub 2020 Sep 5.

Hunter College and The Graduate Center, City University of New York (CUNY), New York, NY, USA.

Purpose: Fertility is an important issue among adolescent and young adult female (AYA-F) cancer survivors. This study examined AYA-F survivors' unmet needs and recommendations for care to address fertility/family-building in post-treatment survivorship.

Methods: Semi-structured interviews (45-60 min) explored themes related to fertility and family-building after cancer. Coding categories were derived based on grounded theory methods. Themes were identified through an iterative process of coding and review.

Results: Participants (N = 25) averaged 29 years old (SD = 6.2; range, 15-39) were primarily White and well educated, and averaged 5.81 years post-treatment (SD = 5.43); 32% had undergone fertility preservation (pre- or post-cancer). Six recommendations for improving care were identified: addressing patient-provider communication, need to provide informational, emotional, and peer support, financial information, and decision-making support. AYA-Fs believed the best way to learn about resources was through online platforms or doctor-initiated discussions. Telehealth options and digital resources were generally considered acceptable. Face-to-face interactions were preferred for in-depth information, when AYA-Fs anticipated having immediate questions or distressing emotions, and with concerns about Internet security. Thus, a combined approach was preferred such that information (via web-based communication) should be provided first, with follow-up in-person visits and referrals when needed.

Conclusion: Informational and support services are needed to better educate patients about gonadotoxic effects and options to have children after cancer treatment is completed. Future work should evaluate how to best support oncology providers in meeting the needs of survivors concerned about fertility and family-building including referral to clinical specialties and supportive resources.
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http://dx.doi.org/10.1007/s00520-020-05731-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7897211PMC
April 2021

Toward a theoretical understanding of young female cancer survivors' decision-making about family-building post-treatment.

Support Care Cancer 2020 Oct 28;28(10):4857-4867. Epub 2020 Jan 28.

Hunter College and The Graduate Center, City University of New York (CUNY), New York, NY, USA.

Purpose: Family-building after gonadotoxic treatment often requires in vitro fertilization, surrogacy, or adoption, with associated challenges such as uncertain likelihood of success, high costs, and complicated laws regulating surrogacy and adoption. This study examined adolescent and young adult female (AYA-F) survivors' experiences and decision-making related to family-building after cancer.

Methods: Semi-structured interviews explored fertility and family-building themes (N = 25). Based on an a priori conceptual model, hypothesis coding and grounded theory coding methods guided qualitative analysis.

Results: Participants averaged 29 years old (SD = 6.2) were mostly White and educated. Four major themes were identified: sources of uncertainty, cognitive and emotional reactions, coping behaviors, and decision-making. Uncertainty stemmed from medical, personal, social, and financial factors, which led to cognitive, emotional, and behavioral reactions to reduce distress, renegotiate identity, adjust expectations, and consider "next steps" toward family-building goals. Most AYA-Fs were unaware of their fertility status, felt uninformed about family-building options, and worried about expected challenges. Despite feeling that "action" was needed, many were stalled in decision-making to evaluate fertility or address information needs; postponement and avoidance were common. Younger AYA-Fs tended to be less concerned.

Conclusion: AYA-Fs reported considerable uncertainty, distress, and unmet needs surrounding family-building decisions post-treatment. Support services are needed to better educate patients and provide opportunity for referral and early preparation for potential challenges. Reproductive counseling should occur throughout survivorship care to address medical, psychosocial, and financial difficulties, allow time for informed decision-making, and the opportunity to prepare for barriers such as high costs.
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http://dx.doi.org/10.1007/s00520-020-05307-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7384920PMC
October 2020

Recruitment via social media: advantages and potential biases.

Digit Health 2019 Jan-Dec;5:2055207619867223. Epub 2019 Aug 6.

Hunter College and the Graduate Center, City University of New York (CUNY), USA.

Background: Adolescent and young adult (AYA) cancer survivors are under-represented in research. Social media is increasingly used for recruitment given its ability to reach large audiences. Differences in participant characteristics and potential biases due to recruitment source are not well understood.

Purpose: This study aimed to: (a) compare recruitment strategies (hospital-based v. social media) in enrollment metrics, and (b) among enrolled participants, evaluate group differences in patient characteristics and patient reported outcomes (PROs).

Methods: Preliminary data from a cancer and fertility study with female AYAs were evaluated. Hospital-based recruitment used electronic medical records (EMR) to identify eligible patients. Social media recruitment involved posting on partner organizations' social media outlets. PROs included validated measures related to the parent study. Descriptive statistics evaluated recruitment metrics. Independent samples -tests and chi-square identified differences in participant characteristics and PROs based on recruitment.

Results: Social media yielded a higher enrollment rate (37%;  = 54/146) compared with hospital-based recruitment (7%;  = 21/289) and required fewer study resources. Compared with hospital-based recruitment, participants from social media were more likely to be White ( = 0.01), with a longer time since treatment ( = 0.03); and reported higher levels of reproductive concern ( = 0.004) and negative mood ( = 0.02), and more negative illness perceptions (s < 0.05).

Conclusion: Recruitment via social media may be a more effective and efficient strategy compared with hospital-based methods. However, group differences were identified that could bias findings and limit generalizability. Advantages of social media should be considered with an understanding of how methodology may impact enrollment and results.
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http://dx.doi.org/10.1177/2055207619867223DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6685119PMC
August 2019