Burgers Vivian W G, van den Bent Martin J, Dirven Linda, Lalisang Roy I, Tromp Jacqueline M, Compter Annette, Kouwenhoven Mathilde, Bos Monique E M M, de Langen Adrianus, Reuvers Milou J P, Franssen Suzanne A, Frissen Simone A M M, Harthoorn Niels C G L, Dickhout Annemiek, Noordhoek Marloes J, van der Graaf Winette T A, Husson Olga
Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, Netherlands.
Department of Medical Oncology, Netherlands Cancer Institute-Antoni van Leeuwenhoek, Amsterdam, Netherlands.
Front Oncol. 2022 Nov 15;12:994934. doi: 10.3389/fonc.2022.994934. eCollection 2022.
Increasingly more adolescent and young adult (AYA, aged 18-39 years) patients with an uncertain and/or poor cancer prognosis (UPCP) are gaining life-years because of novel treatments or refinement of established therapies, and sometimes even face the prospect of long-term disease control. This study aims to examine the challenges of AYAs with a UPCP in daily life to inform the development of AYA care programs.
Semi-structured in-depth interviews were conducted among AYAs with a UPCP. Since we expected differences in experiences between three AYA subgroups, we interviewed patients of these subgroups (1): traditional survivors (2), low-grade glioma survivors, and (3) new survivors. Interviews were analyzed using elements of grounded theory. AYA patients were actively involved as research partners.
In total 46 AYAs with UPCP participated and shared their challenges in daily life. They were on average 33.4 years old (age range 23-44) and most of them were women (63%). The most common tumor types were low-grade gliomas (16), sarcomas (7), breast cancers (6), and lung cancers (6). We identified five primary themes: (1) feeling inferior to previous self and others (e.g. feeling useless, who wants me in a relationship), (2) feeling of being alone (e.g. lonely thoughts, nobody really gets me), (3) ongoing confrontation (e.g. it is always there, own decline), (4) grief about life (e.g. grief about life I did not get, grief about old life), and (5) loss of control over the future (e.g. not able to make future plans, waiting for growth). Although all of the challenges were identified in the three AYA subgroups, the perceived intensity of the challenges differed slightly between the subgroups.
AYAs living with a UPCP experience challenges associated to their sense of altered identity, their position in the social network, and the future uncertainties. This study highlights the importance to recognize and acknowledge the unique challenges of this group. To provide age-specific care, it is important to embed acceptance and commitment therapy and AYA peer support within the healthcare system and other care programs to support AYAs to live well with their disease.
由于新型治疗方法或现有疗法的改进，越来越多癌症预后不确定和/或较差的青少年及年轻成人（AYA，年龄在18至39岁之间）患者延长了生命年限，有时甚至面临长期疾病控制的前景。本研究旨在探讨预后不确定的青少年及年轻成人在日常生活中面临的挑战，为青少年及年轻成人护理项目的开展提供参考。
对预后不确定的青少年及年轻成人进行了半结构化深度访谈。由于我们预计三个青少年及年轻成人亚组的经历存在差异，因此我们对这些亚组的患者进行了访谈：（1）传统幸存者，（2）低级别胶质瘤幸存者，以及（3）新确诊的幸存者。访谈采用扎根理论的方法进行分析。青少年及年轻成人患者作为研究伙伴积极参与其中。
共有46名预后不确定的青少年及年轻成人参与并分享了他们在日常生活中面临的挑战。他们的平均年龄为33.4岁（年龄范围23至44岁），其中大多数为女性（63%）。最常见的肿瘤类型为低级别胶质瘤（16例）、肉瘤（7例）、乳腺癌（6例）和肺癌（6例）。我们确定了五个主要主题：（1）感觉比以前的自己和他人低一等（例如感觉无用，谁会想和我谈恋爱），（2）孤独感（例如孤独的想法，没人真正理解我），（3）持续的抗争（例如它一直存在，自身的衰退），（4）对生活的悲痛（例如对未曾拥有的生活的悲痛，对过去生活的悲痛），以及（5）对未来失去掌控（例如无法制定未来计划，等待病情好转）。尽管在这三个青少年及年轻成人亚组中都发现了所有这些挑战，但各亚组对这些挑战的感知强度略有不同。
患有预后不确定疾病的青少年及年轻成人在日常生活中面临着与身份认同感改变、在社交网络中的地位以及未来不确定性相关的挑战。本研究强调了认识和承认这一群体独特挑战的重要性。为了提供针对特定年龄段的护理，将接纳与承诺疗法和青少年及年轻成人同伴支持纳入医疗保健系统及其他护理项目中非常重要，以帮助青少年及年轻成人更好地与疾病共存。
