Preferences for cancer survivorship care among adolescents and young adults who experienced healthcare transitions and their parents
Preferences for cancer survivorship care among adolescents and young adults who experienced healthcare transitions and their parents
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DOI：
10.1007/s11764-019-00781-x
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发表时间：
2019-08-01
影响因子：
3.7
通讯作者：
Szalda, Dava
中科院分区：
文献类型：
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作者：
Psihogios, Alexandra M.;Schwartz, Lisa A.;Szalda, Dava
目的 本研究旨在阐明经历医疗保健转型的青少年和青年 (AYA) 儿童癌症幸存者的生存护理体验和偏好。方法 对两组 AYA 幸存者及其父母进行了八个焦点小组的调查：(1) 最近完成癌症治疗并开始随访护理的患者和 (2) 从儿科向成人幸存者诊所过渡后脱离随访护理的患者。访谈员使用结构化访谈指南，其中包含有关对幸存者护理模式、资源和工具（例如幸存者护理计划）的看法和偏好的问题。我们采用定向内容分析技术来识别和组织相关主题。结果 本研究结果支持优化 AYA 生存护理模型的六个主要主题：(1) 提高对后期影响和 LTFU 需求的了解； (2) 提供支持性服务，帮助消除对健康的恐惧和不确定性； (3) 调整生存护理以符合 AYA 发育因素； (4) 加大对医疗保健转型的支持； (5) 改善患者与家属之间以及提供者之间的幸存者护理沟通和协调； (6) 纳入数字健康工具。结论 这些群体代表了 AYA 生存护理中的弱势患者群体，他们的观点强调了增强长期护理模式的潜在临床和研究重点。
Purpose This study aimed to elucidate experiences and preferences for survivorship care delivery among adolescent and young adult (AYA) childhood cancer survivors who experienced healthcare transitions. Methods Eight focus groups were conducted with two groups of AYA survivors and their parents: (1) those who recently completed cancer treatment and are beginning follow-up care and (2) those who disengaged in follow-up care after the transition from pediatric to adult survivorship clinics. Interviewers used a structured interview guide that contained questions about perceptions and preferences for survivorship care models, resources, and tools (e.g., a survivorship care plan). We employed directed content analysis techniques to identify and organize relevant themes. Results Results of this study support six primary themes for optimizing survivorship care models for AYA: (1) improve knowledge of late effects and need for LTFU; (2) provide supportive services that help to address fear and uncertainty about health; (3) adapt survivorship care to be consistent with AYA developmental factors; (4) increase support surrounding healthcare transitions; (5) improve survivorship care communication and coordination between patients and families, and between providers; and (6) incorporate digital health tools. Conclusions These groups represent vulnerable patient populations in AYA survivorship care and their perspectives highlight potential clinical and research priorities for enhancing long-term care models.