Shea Kathleen A, Steinberg Dara M, Santiago Rebecca A
Columbia University Medical Center, New York, NY, USA.
J Pediatr Oncol Nurs. 2019 Mar/Apr;36(2):86-92. doi: 10.1177/1043454218819452. Epub 2018 Dec 25.
With improved curative therapies, over 80% of children and adolescent/young adults diagnosed with cancer are expected to live into adulthood. This population is at risk for increased morbidity and early mortality and requires ongoing health care and surveillance for late effects of treatment. This pilot study assessed the acceptability of a structured medical visit at the completion of cancer-directed therapy as well as patient/family's knowledge of diagnosis and other aspects of care. Patients/families who were 0 to 6 months from completion of cancer-directed therapy attended a one-time transition visit during which they completed a series of questionnaires assessing knowledge about diagnosis, treatment, potential late effects, and duration of ongoing care. They were then given treatment summaries, a plan for follow-up care, information about care after treatment as well as late effects. They completed a questionnaire to assess their satisfaction with this visit. The majority of patients/families knew their diagnosis and treatment modalities. Less knew that their treatment put them at risk for cardiac toxicity or problems with future fertility. A significant number thought follow-up care would continue for only 5 years. Overall participants were satisfied with the visit. The transition period from on to off therapy may be a critical time point to provide patients with cancer and their families with information regarding treatment, follow-up care and testing, and potential late effects. Future studies should assess if this intervention improves compliance with recommended care and surveillance, and improved outcomes.
随着治疗方法的改进，超过80%被诊断患有癌症的儿童和青少年/青年有望活到成年。这一人群面临发病率增加和过早死亡的风险，需要持续的医疗保健和对治疗晚期影响的监测。这项试点研究评估了在癌症定向治疗结束时进行结构化医疗访视的可接受性，以及患者/家属对诊断和其他护理方面的了解。距离癌症定向治疗结束0至6个月的患者/家属参加了一次过渡访视，在此期间他们完成了一系列问卷，评估对诊断、治疗、潜在晚期影响和持续护理时长的了解。然后他们收到了治疗总结、后续护理计划、治疗后护理信息以及晚期影响的相关信息。他们完成了一份问卷，以评估对此次访视的满意度。大多数患者/家属知道自己的诊断和治疗方式。较少有人知道他们的治疗会使他们面临心脏毒性或未来生育问题的风险。相当一部分人认为后续护理只会持续5年。总体而言，参与者对此次访视感到满意。从治疗到停止治疗的过渡期可能是为癌症患者及其家属提供有关治疗、后续护理和检查以及潜在晚期影响信息的关键时间点。未来的研究应评估这种干预措施是否能提高对推荐护理和监测的依从性，并改善治疗效果。
