Center for Biobehavioral Health, The Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, Ohio.
Department of Educational Psychology, The University of Texas at Austin, Austin, Texas.
Pediatr Blood Cancer. 2021 Mar;68(3):e28826. doi: 10.1002/pbc.28826. Epub 2020 Dec 15.
Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative to parents and oncologists.
Families of adolescents (aged 10-17) were recruited at two pediatric institutions following a new diagnosis or relapse. Seventy-four adolescents, 68 mothers, and 40 fathers participated at enrollment; 76 adolescents, 69 mothers, and 35 fathers participated one year later. The adolescent's primary oncologist reported on prognosis only at enrollment. Participants rated the likelihood of the adolescent's survival in five years, as well as reporting prognosis communication and sources of information.
Most oncologists (65%) and fathers (63%) discussed prognosis in numerical terms with the adolescent at baseline, which was greater than mother report (49%) of discussions of numerical prognosis with adolescents. Adolescents reported a better prognosis than oncologists, but comparable with mothers at diagnosis and one year. Adolescents' prognosis estimates were stable over time (P > .05). At diagnosis, adolescent-father (P = 0.025) and adolescent-oncologist (P < 0.001) discrepancies were larger for youth with advanced than non-advanced cancer. Adolescents whose parents received numerical prognosis estimates from the oncologist, and whose fathers reported providing numerical prognosis estimates had more accurate understandings of prognosis (P < 0.05).
Adolescent prognosis estimates were comparable with those of parents at diagnosis and one year but more favorable than that of oncologists. Although additional research is needed, results suggest discrepancies in prognosis estimates between family members and oncologists, particularly for adolescents with advanced cancer.
尽管有呼吁增加青少年癌症预后沟通的声音，但仅有有限的研究比较了青少年对预后的看法与其父母的看法。我们评估了青少年对自身预后的理解与父母和肿瘤医生的看法。
在两家儿科医院新诊断或复发后，招募了青少年（10-17 岁）及其家庭。74 名青少年、68 名母亲和 40 名父亲在入组时参与了研究；76 名青少年、69 名母亲和 35 名父亲在一年后参与了研究。青少年的主要肿瘤医生仅在入组时报告预后。参与者评估了青少年在五年内生存的可能性，并报告了预后沟通和信息来源。
大多数肿瘤医生（65%）和父亲（63%）在基线时与青少年以数值形式讨论了预后，这高于母亲报告的与青少年讨论数值预后的比例（49%）。青少年报告的预后好于肿瘤医生，但与母亲在诊断和一年时的报告相当。青少年的预后估计在时间上是稳定的（P>.05）。在诊断时，患有晚期癌症的青少年与肿瘤医生（P=0.025）和青少年与肿瘤医生（P<0.001）的预后差异较大。父母从肿瘤医生那里获得了数值预后估计值且父亲报告提供了数值预后估计值的青少年，对预后的理解更准确（P<.05）。
青少年的预后估计在诊断和一年时与父母的估计相当，但比肿瘤医生的估计更有利。尽管还需要进一步的研究，但结果表明，家庭成员和肿瘤医生之间的预后估计存在差异，特别是对于患有晚期癌症的青少年。
