ABSTRACT
OBJECTIVE: This study assessed the needs and perspective of (1) couples and (2) spouses/partners when considering fertility preservation after a cancer diagnosis. RESEARCH APPROACH: Semi-structured interviews explored (1) couples' shared decision-making and (2) spouses'/partners' individual perspectives. PARTICIPANTS: Twelve female cancer survivors and their partners (spouses or domestic/romantic partners) (n = 24). METHODOLOGICAL APPROACH: Dyadic and individual interviews were conducted using a Decisional Needs Assessment interview guide. Thematic analysis identified key themes. FINDINGS: Couples reported making fertility preservation decisions like other major decisions, including prioritizing mutual satisfaction. Partners also reported concerns about patients' health, variable decision-making needs, and letting patients lead. Couples unanimously recommended fertility preservation consultations, and designing resources that provide information and assess needs for both patients and partners. INTERPRETATIONS: Patients and partners have shared and unique needs when facing fertility preservation decisions. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS OR POLICY: Whenever feasible, psychosocial providers should assess and address couples' and partners' fertility preservation decision-making needs.
Subject(s)
Decision Making , Fertility Preservation/psychology , Interpersonal Relations , Neoplasms/therapy , Spouses/psychology , Adolescent , Adult , Cancer Survivors/psychology , Cancer Survivors/statistics & numerical data , Female , Humans , Male , Middle Aged , Qualitative Research , Spouses/statistics & numerical data , Young AdultABSTRACT
INTRODUCTION: National guidelines recommend that all reproductive-age women with cancer be informed of their fertility risks and offered referral to fertility specialists to discuss fertility preservation options. However, reports indicate that only 5% of patients have consultations, and rates of long-term infertility-related distress remain high. Previous studies report several barriers to fertility preservation; however, initial success has been reported using provider education, patient decision aids and navigation support. This protocol will test effects of a multicomponent intervention compared with usual care on women's fertility preservation knowledge and decision-making outcomes. METHODS AND ANALYSIS: This cluster-randomised trial will compare the multicomponent intervention (provider education, patient decision aid and navigation support) with usual care (consultation and referral, if requested). One hundred newly diagnosed English-speaking women of reproductive age who are at risk of cancer-related infertility will be recruited from four regional oncology clinics.The Pathways patient decision aid website provides (1) up-to-date evidence and descriptions of fertility preservation and other family-building options, tailored to cancer type; (2) structured guidance to support personalising the information and informed decision-making; and (3) a printable summary to help women prepare for discussions with their oncologist and/or fertility specialist. Four sites will be randomly assigned to intervention or control groups. Participants will be recruited after their oncology consultation and asked to complete online questionnaires at baseline, 1 week and 2 months to assess their demographics, fertility preservation knowledge, and decision-making process and quality. The primary outcome (decisional conflict) will be tested using Fisher's exact test. Secondary outcomes will be assessed using generalised linear mixed models, and sensitivity analyses will be conducted, as appropriate. ETHICS AND DISSEMINATION: The University of Texas MD Anderson Cancer Center provided approval and ongoing review of this protocol. Results will be presented at relevant scientific meetings and submitted for publication in a peer-reviewed journal. TRIAL REGISTRATION NUMBER: NCT03141437; Pre-results.
