Exploring patient and provider perspectives on the intersection between fertility, genetics, and family building
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ORIGINAL ARTICLE
Exploring patient and provider perspectives on the intersection between fertility, genetics, and family building Paige W. Lake 1 & Monica L. Kasting 1,2,3 & Marleah Dean 4 & Lindsay Fuzzell 1 & Janella Hudson 1 & Rodrigo Carvajal 5 & Damon R. Reed 6 & Gwendolyn P. Quinn 7 & Susan T. Vadaparampil 1,2,8 Received: 18 October 2019 / Accepted: 16 January 2020 # Springer-Verlag GmbH Germany, part of Springer Nature 2020
Abstract Objective Adolescent and young adult (AYA) cancer patients have distinct medical and psychosocial needs and fertility is a key concern. Early age of onset is a risk factor for hereditary cancer and AYAs are more likely to experience reduced fertility. This has implications for future family building decisions and fertility preservation (FP) and genetic testing/counseling (GT/GC) education. Methods Patients diagnosed with cancer between the ages of 18 and 39 and health care providers (HCPs) who treat AYA cancer patients were recruited from a single institution. Qualitative interviews explored AYA patients’ and HCPs’ concerns regarding their experiences discussing genetics and FP. Results The majority of patients (n = 17) were female (59%), and the majority of HCPs (n = 18) were male (67%). Overall, participants had differing perceptions of FP and GT/GC-related information provided during the clinical visit. Patients indicated initiating the conversation about FP and did not recall HCPs discussing GT/GC with them. HCPs indicated patients were often overwhelmed with too much information and comprehension of this discussion is limited. HCPs also felt patients’ emotions/ beliefs determined their information-seeking behavior specific to FP and GT/GC. Participants felt educational materials should be developed and delivered in a video format depicting a patient–provider interaction or patient testimonial. Conclusion AYA patients are often overwhelmed by a cancer diagnosis; the complexity/volume of information regarding FP and GT/GC may hinder understanding and decision-making about family building. Educational materials that help patients understand what questions to ask HCPs about FP and GT/GC should be developed to improve knowledge, psychosocial well-being, and future family building decisions. Keywords Adolescent and young adult . Cancer . Education . Oncofertility . Reproductive health
* Susan T. Vadaparampil [email protected] 1
Department of Health Outcomes & Behavior, Moffitt Cancer Center, Tampa, FL, USA
2
Center for Immunization and Infection Research in Cancer, Moffitt Cancer Center, Tampa, FL, USA
3
Department of Public Health, Purdue University, West Lafayette, IN, USA
4
Department of Communication, University of South Florida, Tampa, FL, USA
5
Department of Biostatistics and Bioinformatics Shared Resources, Moffitt Cancer Center, Tampa, FL, USA
6
Department of Interdisciplinary Cancer Management, Moffitt Cancer Center, Tampa, FL, USA
7
New York University School of Medicine, New York, NY, USA
8
College of Medicine, University of South Florida,
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