Abstract
Objective: For adolescents and young adults (AYAs), cancer-related fertility concerns (FC) are salient, disruptive, and complex. Clinical communication about FC and fertility preservation options are suboptimal, increasing patient distress. The purpose of this study is to construct a conceptual model of FC among AYAs with cancer to inform future measurement development. Methods: Concept elicitation interviews were conducted with a purposive sample of stakeholders: 36 AYAs (10 adolescents, 12 emerging adults, and 14 young adults), 36 AYA oncology health care providers, and 12 content experts in cancer-related infertility. The constant comparative method was used to identify themes and properties that illustrate AYAs' conceptualization and/or experience of FC. Results: Thirteen themes characterized FC among AYAs with cancer, varying by stakeholder group and domain affiliations. Themes were grouped by four domains (e.g., affective, information, coping, and logistical), which organized the conceptual model. Affective experiences were further determined to be an important component within the other three domains. AYAs' fertility and fertility preservation experiences were shaped by communication factors and timing factors including placement along the lifespan/cancer continuum. Conclusions: AYA FC are characterized by uncertainty and confusion that may contribute to future decisional regret or magnify feelings of loss. Results add to previous research by examining individual, relational, and health care factors that fluctuate to inform fertility preservation perceptions and decision-making across the AYA age spectrum. Findings will be used to develop and test new self-report measures of FC among AYAs with cancer and survivors using classic and modern measurement theory approaches.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 1383-1392 |
| Number of pages | 10 |
| Journal | Psycho-oncology |
| Volume | 30 |
| Issue number | 8 |
| DOIs | |
| State | Published - Aug 2021 |
Funding
The authors would like to thank the adolescent and young adult survivors, health care providers, and content experts who generously devoted their time to teach us about fertility within the context of cancer. Research reported in this publication was supported by the National Cancer Institute (NCI) of the National Institutes of Health under award number R01CA218398. This research was also supported in part by the Qualitative and Patient‐Reported Outcomes Developing Shared Resource of the Wake Forest Baptist Comprehensive Cancer Center's NCI Cancer Center Support Grant P30CA012197. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Keywords
- adolescents
- cancer
- communication
- fertility
- oncology
- psycho-oncology
- young adults
ASJC Scopus subject areas
- Experimental and Cognitive Psychology
- Oncology
- Psychiatry and Mental health
