Medical and information needs among young women with breast cancer in Mexico

Abstract

Objective To describe clinical and information needs, identify unmet support services and guide interventions for young breast cancer (BC) patients in Mexico. Methods Cross‐sectional, qualitative study, using interpretive description methodology. Patients with initial BC diagnosis within 6–12 months prior to enrolment, ≤40 years old and literate were included in focus groups. Results Twenty‐nine patients were included. Expressed needs were classified into the following categories: (a) understanding diagnosis and treatment; (b) treatment side effects; and (c) time, source and communication means. Patients felt their medical team did not provide enough information regarding diagnosis, treatment and relevant side effects related to fertility, menopause and sexuality. Lack of information fuelled uncertainty, distress, anxiety and fear, and could negatively influence treatment decisions. Patients wished that news be communicated considering their own attitude regarding the disease and providing psychological support when necessary, including partners, relatives and friends. They recommended that information should be delivered with an empathic and personalised approach, with take‐home educational material to help them recall, comprehend and/or expand verbal information received during medical appointments. Conclusions This study provides valuable insight to increase attention on unmet needs of young BC patients and to improve doctor–patient communication to ensure better care.

Information needs and research priorities for fertility preservation in women with breast cancer: patients and experts’ perspectives

“…As has been done with the use of decision aids to address oncofertility issues, which offer high levels of satisfaction with the information offered, both by patients and their families and by health professionals (Nagel & Neal, 2008; Peate, et al, 2011; Tam et al, 2018). Furthermore, the evidence indicates that the unmet information needs not only increase the decisional conflict (Benedict et al, 2016; Mersereau et al, 2013; Müller et al, 2018), but also the feelings of suffering and anxiety that hinder decision‐making about the procedures of FP (Villarreal‐Garza et al, 2019).…”

“…In the framework of BC care, some key elements must be taken into account when offering information, such as: a) the amount of information, since the more medical information that is offered, the less information that is likely to be remembered (McGuire, 1996); b) the lack of adequacy and clarity of the content provided; c) the lack of written material that allows deepening or remembering the explanations offered verbally in the consultation (Villarreal‐Garza et al, 2019); c) the high level of emotional stress due to the impact of the diagnosis they have just received (Alonso Zafra et al, 2013; Bermejo & Almonacid, 2010; Kessels, 2003); as well as d) the variability in the level of health literacy observed in the patients.…”

“…Similarly, before making decisions, it is crucial that women with BC have access to quality information, which will allow them to make informed decisions with their professionals about FP interventions. Mainly, when the evidence suggests that information needs about FP options, the impact of treatments on future reproduction, concerns about safety and time, can lead to high levels of decisional conflict (Benedict et al, 2016;Mersereau et al, 2013;Müller et al, 2018) and regret when it comes to decision-making (Garvelink et al, 2012;Peate et al, 2012;Wang et al, 2019), as well as it can induce feelings of fear, suffering and anxiety (Villarreal-Garza et al, 2019).…”

Clinically Relevant Germline Mutations in a Cohort of Young Women with Breast Cancer: A Comprehensive Analysis of Hereditary-Cancer Genes from Whole-Exome Sequencing

“…This study included 108 cases of early-onset breast cancer. The median age at diagnosis was 35 years (interquartile range: [32][33][34][35][36][37][38]; however, in women with a positive mutation, it was 28.5 (26.5-38) years. Almost 50% of the cases were diagnosed at an advanced clinical stage (III-IV).…”

“…The recent revolution in genetic sequencing technology opens the door for a rapid increase in knowledge concerning the genetic basis for breast cancer in young women. Although treatment for early-onset breast cancer is similar to that for other age groups, the clinical management of these patients must meet specific needs [38]. Having adequate genetic counseling empowers young women to make optimal decisions about their treatment and follow-up, as well as enabling oncologists to offer patients more targeted treatment and additional prophylactic options.…”