Purpose: Despite its importance to patients, discussions regarding fertility decision-making related to cancer treatment are often inadequate. This qualitative study explored the experiences of oncologists and cancer patients regarding fertility and cancer treatment decision making.
Method: Practicing oncologists were recruited from the department of health physician registry in authors’ state and from local cancer centers. Cancer survivors were recruited from local support agencies and area cancer centers. All cancer patients were premenopausal at diagnosis and completed treatment within the last three years. Experienced facilitators and interviewers conducted two focus groups and nine individual interviews among oncologists (one focus group, three interviews) and cancer survivors (one focus group, six interviews) which were tape-recorded, transcribed and entered into NVivo software to facilitate analysis. Using a grounded-theory approach, project team members read through initial transcripts to identify preliminary themes, and a hierarchical coding structure was developed and refined by the project team.
Result: Common themes among both oncologists and cancer patients regarding fertility decision making experiences included: 1) Patients are emotionally overwhelmed at the time of diagnosis hampering their ability to focus on fertility decisions; 2) there is a need for oncologists to tailor discussions regarding fertility to meet the individual patient’s medical and social situation; and 3) there is a need to revisit fertility discussions after treatment has ended. Oncologists perceived many more barriers to fertility decision making than did participating cancer survivors. These included structural barriers such as lack of time for in-depth discussions and lack of reproductive endocrinologists with experience treating cancer patients, as well as the high degree of uncertainty surrounding the risks of infertility with newer chemotherapy agents and combinations, and the potential risk of recurrence associated with IVF procedures. Survivors focused on the right to be informed of fertility changes and fertility preservation options regardless of prognosis.
Conclusion: While certain decision making experiences were similar between oncologists and survivors, oncologists perceived the need for more structural changes and increased knowledge, while cancer survivors perceived that oncologists were more resistant to discussion and disclosure regarding fertility changes associated with treatment. This study suggests the need for interventions to assist oncologists and cancer patients in order to improve communication between patient and providers, and provide adequate support for decision making.
Candidate for the Lee B. Lusted Student Prize Competition