Duffey-Lind Eileen C, O'Holleran Eileen, Healey Martha, Vettese Margaret, Diller Lisa, Park Elyse R
Dana-Farber Cancer Institute, Boston, Massachusetts 02115, USA.
J Pediatr Oncol Nurs. 2006 Nov-Dec;23(6):335-43. doi: 10.1177/1043454206293267.
There are no clear transition guidelines for adolescent and young adult cancer patients, their parents, and their primary care providers (PCPs) when completing active therapy and within the first few years after therapy. The purpose of this pilot study was to identify needs and concerns of recently treated adolescent cancer patients and their parents, young adult cancer survivors, and the community PCPs of adolescent patients. Four focus group interviews were conducted with survivors and parents, and 3 in-depth interviews were conducted with PCPs. All interviews were audiotaped and transcribed for content analysis. A range of needs were identified, including lack of adequate written and verbal information about their prior treatment, its potential side effects, and appropriate follow-up care. The best sources for education were identified as the primary oncologist, nurse practitioner, or nurse. At completion of treatment, parents and adult survivors felt a lack of psychosocial support. Suggestions from participants included use of informational videos for survivors, weekend education and support programs, ongoing support groups, use of the Internet, and educational newsletters. The PCPs reported a lack of general pediatric oncology knowledge and specific patient information, time constraints in their patient schedules, and having few survivors in their practices as barriers to optimal survivorship care. Further research is needed to look at the unmet educational and psychological needs of childhood cancer survivors and their parents during the critical time when they transition off treatment.
对于青少年和青年癌症患者、他们的父母以及他们的初级保健提供者（PCP）而言，在完成积极治疗期间以及治疗后的头几年里，没有明确的过渡指南。这项试点研究的目的是确定近期接受治疗的青少年癌症患者及其父母、青年癌症幸存者以及青少年患者的社区初级保健提供者的需求和担忧。对幸存者和父母进行了4次焦点小组访谈，对初级保健提供者进行了3次深入访谈。所有访谈都进行了录音并转录以进行内容分析。确定了一系列需求，包括缺乏关于他们先前治疗、其潜在副作用以及适当后续护理的充分书面和口头信息。被确定为最佳教育来源的是主治肿瘤学家、执业护士或护士。在治疗结束时，父母和成年幸存者感到缺乏心理社会支持。参与者提出的建议包括为幸存者使用信息视频、周末教育和支持项目、持续的支持小组、互联网的使用以及教育通讯。初级保健提供者报告称，缺乏一般儿科肿瘤学知识和特定患者信息、患者日程安排中的时间限制以及他们的诊所中幸存者较少是提供最佳生存护理的障碍。需要进一步研究，以关注儿童癌症幸存者及其父母在结束治疗的关键时期未得到满足的教育和心理需求。
