Pediatric cancer, a disease once thought to be primarily incurable, now has an 80% cure rate as a result of clinical advances in technology, pharmaceuticals and screening. For many young patients and their families, survival takes precedence over all other issues immediately following a cancer diagnosis. As a result, late effects such as fertility loss, are often not addressed until remission or after fertility impacting cancer treatments have already begun. A new publication in the journal, Pediatrics, by Gwendolyn Quinn, Caprice Knapp, Devin Murphy, Kelly Sawczyn, and Leonard Sender entitled, “Congruence of Reproductive Concerns Among Adolescents with Cancer and Parents: Pilot Testing an Adapted Instrument,” the authors conducted a pilot study to test a 10-item reproductive concerns scale adapted for female adolescent cancer patients and their parents, to determine the congruence between parent and adolescent fertility cancers as a result of cancer diagnosis.
The authors hypothesized that adolescent patients would struggle to actualize long term cancer effects as a result of their young age and inexperience with parenthood; therefore, have fewer reproductive concerns than their parents. Parents on the other hand, would view their child’s fertility loss more negatively and dramatically due to their experience as parents. The authors also hypothesized that age would play a factor in the congruence of fertility concerns between parent and child with older adolescents sharing similar reproductive concerns with their parents.
In order to obtain accurate and unfiltered feedback from adolescents, they were interviewed in rooms separate from their parents. Findings showed that the majority of parents provided inaccurate predictions of their daughters’ responses regarding their reproductive concerns. Overall, parents underestimated their child’s desire to have children of their own one day and expected that their children would be satisfied with survivorship.
As a result of this study, two key issues regarding adolescent reproductive concerns and parent perceptions were highlighted: 1) that creating and administering pediatric instruments must be done with pediatric patients for accuracy, without parental involvement which often inhibits free expression, and 2) parents often underestimated their daughters concern about future reproduction when impacted by a cancer diagnosis. This study demonstrates that adolescents have strong reproductive concerns that are not being captured in current quality-of-life instruments and may be further neglected because of parents’ unawareness of their child’s concerns. Thus, patient discussions regarding fertility concerns should be conducted before treatment begins, during and after.