Johnson Andrea, Widger Kimberley
Lawrence Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada.
Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, Canada.
Psychooncology. 2025 May;34(5):e70155. doi: 10.1002/pon.70155.
Many adolescents will not survive their cancer diagnosis and will live with advanced cancer (cancer i.e. difficult to cure). Due to the advancement of cancer therapies, many adolescents will live with advanced cancer for long periods of time. Enhancing QoL is a well-established goal of their clinical oncology and palliative care however, there has been little research to conceptualize QoL in ways meaningful to them. There has also been a lack of QoL research focused on the inclusion of their voices and experiences into QoL construct development.
The aim of this study was to develop proposed conceptual domains of QoL relevant to adolescents with advanced cancer.
This study was a qualitative study grounded in Interpretive Description. We used social media content created by adolescents living with advanced cancer to inform the development of QoL domains. Adolescents are increasingly using social media to share their experiences and we believed social media would facilitate access to rich data.
235 social media posts recorded by 14 adolescents were included in the analysis. This analysis generated domains relevant to the QoL of adolescents with advanced cancer: (1) Perceived Health, (2) The Lived Body, (3) Emotional Wellbeing, (4) Normalcy, (5) Purpose and Direction and (6) Re-Orientation.
The QoL of adolescents with advanced cancer is poorly understood. This research has generated unique conceptual domains of QoL relevant to this population of adolescents. These concepts will inform the future development of a patient-reported outcome measure (PROM) that can measure their QoL.
许多青少年在被诊断患有癌症后无法存活，而是带着晚期癌症（即难以治愈的癌症）生活。由于癌症治疗的进步，许多青少年会长期带着晚期癌症生活。提高生活质量是他们临床肿瘤学和姑息治疗的既定目标，然而，很少有研究以对他们有意义的方式来概念化生活质量。也缺乏将他们的声音和经历纳入生活质量构建发展的生活质量研究。
本研究的目的是为患有晚期癌症的青少年制定与生活质量相关的拟议概念领域。
本研究是一项基于解释性描述的定性研究。我们使用患有晚期癌症的青少年创建的社交媒体内容来为生活质量领域的发展提供信息。青少年越来越多地使用社交媒体来分享他们的经历，我们认为社交媒体将有助于获取丰富的数据。
14名青少年记录的235条社交媒体帖子被纳入分析。该分析产生了与患有晚期癌症的青少年生活质量相关的领域：（1）感知健康，（2）身体体验，（3）情绪健康，（4）正常状态，（5）目标与方向，以及（6）重新定位。
对患有晚期癌症的青少年的生活质量了解不足。这项研究产生了与这一青少年群体相关的独特生活质量概念领域。这些概念将为未来开发一种能够测量他们生活质量的患者报告结局指标（PROM）提供信息。
