The majority of adolescents and young adults with cancer want early information regarding late effects of their disease and infertility, but most of them do not believe they receive this knowledge, according to a study.
“Adolescent and young adult (AYA) cancer survivors have high risks of late effects. Little is known about the late‐effect information needs of AYAs early in treatment or their role in treatment decision making. This study evaluated the importance, quality, and implications of information about late effects in AYAs recently diagnosed with cancer,” the researchers wrote.
Cancer patients aged between 15 and 29 years treated at the Dana-Farber Cancer Institute in Boston, Mass., took part in a survey within six weeks of their diagnosis. The survey questioned patients on their late‐effect and infertility information needs, treatment decision making, and communication outcomes.
Of the adolescents and young adults were interviewed, 45% were female, and 88% were white. Most of the patients (n=173/200, 87%) said that information regarding the risks of late effects was extremely or very important, and 80% (n=159/200) said infertility information was valuable. More than half of patients (n=105/200, 53%) were distressed by information regarding late effects; 45% (n=89/200) were distressed by information regarding infertility. Patients who thought late-effect information was distressing were more likely to find it valuable (P<0.0001). Consideration of late effects (n=82/201, 41%) and infertility (n=72/201, 36%) played a significant role in treatment decision-making. The majority of patients (n=184/199, 92%) said they felt they received high-quality information regarding their diagnosis; however, only 57% (n=113/199; P<0.0001) believed they received high-quality information regarding late effects, and 65% (n=130/199; P<0.0001) said the same about infertility information.
The survey results were published in Cancer.
“Most AYAs with cancer value early information about the risks of late effects and infertility, yet many patients felt that they had not received high‐quality information about these topics. The development of age‐appropriate late‐effect communication strategies that recognize high AYA distress may help to address the gap between desired information and perceived information quality,” the researchers summarized.