Need for information, honesty and respect: patient perspectives on health care professionals communication about cancer and fertility

Abstract

BackgroundIndividuals affected by cancer report a need for information about fertility from health care professionals (HCPs), in order to inform decision making and alleviate anxiety. However, there is evidence that many health professionals do not engage in such discussions.MethodA mixed method design was used to examine the construction and subjective experience of communication with health professionals about fertility in the context of cancer, from the perspective of patients. A survey was completed by 693 women and 185 men, across a range of cancer tumour types and age groups, and in-depth one-to-one interviews conducted with a purposively selected subsample of survey respondents, 61 women and 17 men. The chi square test for independence was used to test for group differences between women and men on closed survey items. Thematic analysis was used to examine the open ended survey responses and interviews.ResultsSignificantly more women (57%, n = 373) than men (46%, n = 80) (X2(2517) = 6.54, p = .011) reported that they had discussed fertility with a HCP since diagnosis of cancer. Satisfaction with the discussion was reported by 65% (n = 242) of women and 69% (n = 54) (ns) of men. This discussion was reported to have been initiated by the patient or their partner in 44% (n = 165) of women and 47% (n = 37) (ns) of men. In the interviews and open ended surveys three themes were identified: Feeling heard and informed about fertility after cancer: Positive experiences of HCP communication; “I was never given full disclosure”: HCP silence or reticence about discussing fertility after cancer, including the sub-theme “Their primary concern is getting me cancer free”: Constructions of absence of fertility communication by HCPs; and Confusion and lack of compassion: Unsatisfactory information provision about fertility and cancer.ConclusionDiscussion with a HCP about fertility concerns, and satisfaction with the discussion, was associated with reports of lower patient distress, greater knowledge and understanding of the consequences of cancer on fertility, involvement in the decision making process about fertility preservation, and satisfaction with health care.

Infertility‐related distress following cancer for women and men: A mixed method study

“…Awareness of the gendered meaning and experience of fertility concerns is central in the provision of information and support . Women reported significantly higher infertility distress than men, and were more likely to report devastation and grief in open‐ended survey questions and interviews, supporting previous reports that infertility is of greater concern to women cancer survivors .…”

“…Open‐ended survey items and the semi structured interview guide were developed through a process of consultation between the research team and community stakeholders (cancer survivors and cancer care organisations). The same questions were used in both modalities, with the interviews exploring questions in more depth: experience of fertility concerns after cancer and impact on relationships, feelings about the body, feelings about being a man or a woman, importance of parenthood, and interactions with health professionals (reported elsewhere) …”

Oncofertility—An emerging discipline rather than a special consideration

“…When patients or parents receive information on oncofertility, it is usually only from an oncologist and not from a fertility specialist, which means that patients may not have the most accurate information on FP. There is often also inadequate communication between oncologists and fertility specialists . Given the competing demands of providing complicated and detailed information about fertility risk and FP options, there is a role for cancer specialists to work collaboratively with fertility specialists to achieve the best outcome for patients …”

Applying behavioral theory to understand fertility consultation uptake after cancer

“…Discussions about infertility risk are an important aspect of high quality of cancer care for reproductive‐aged patients . While oncology teams are initiating discussions of fertility about half of the time, rates of fertility consultation (FC) with reproductive specialists prior to cancer treatment remain inadequate, with estimates ranging from 5% to 26% .…”

“…Discussions about infertility risk are an important aspect of high quality of cancer care for reproductive‐aged patients . While oncology teams are initiating discussions of fertility about half of the time, rates of fertility consultation (FC) with reproductive specialists prior to cancer treatment remain inadequate, with estimates ranging from 5% to 26% . Barriers to FC include treatment‐related time constraints, high cost, patient characteristics (eg, socioeconomic status and partner status) that can influence provider discussions of fertility, lack of provider training, lack of access to care, and lack of knowledge or information .…”