Frontiers in Psychology 发表癌症观察等待患者体验的质性系统综述与主题综合

摘要

目的：

观察等待，有时也称为主动监测或观察，被用于多种癌症情境中，以避免或延迟不必要的治疗及其相关危害。尽管这种方法可能减少过度治疗，但也可能使患者处于一种不同寻常的境地——带着已知的癌症生活，接受监测而非立即治疗。这可能带来重要的心理和社会后果。本综述旨在综合探讨患者在不同癌症情境下观察等待体验的定性研究。

方法：

我们对已发表的、考察患者观察等待体验的研究进行了定性系统综述和主题综合。我们在主要电子数据库中进行了系统检索，并以手工检索作为补充。符合条件的研究采用定性方法，聚焦于在观察等待、主动监测或同等监测路径下生活的成人癌症患者的体验。对纳入研究进行了方法学质量评价，并采用主题综合对研究结果进行分析，以生成描述性主题和更高层次的分析性主题。

结果：

共纳入25项研究，涵盖多种癌症类型和临床路径。识别出五个总体主题。第一，患者描述了复杂的情绪反应，包括震惊、恐惧、焦虑、不确定感，部分患者随时间逐渐适应。第二，决策受到风险认知、对治疗的信念以及对临床医生和医疗系统不同程度的信任的影响。第三，社会体验常常以孤立、被误解、污名化以及家庭和亲密关系中的紧张为特征，尤其是当他人难以理解在没有积极治疗的情况下患者仍存在的痛苦时。第四，患者运用了一系列应对策略，包括从监测中获得安心、同伴支持、寻求信息、接纳和建立日常规律。第五，沟通和支持性照护成为核心，患者重视清晰的解释、连续性、被认可，以及讨论不确定性和情绪负担的机会。

结论：

观察等待并非一种被动的体验。即使在临床上合适，它也可能在心理上要求很高，在社会层面也很复杂。癌症服务机构应认识到与带瘤未治但接受监测相关的情绪负担，并应主动识别可能受益于更清晰沟通、 reassurance 以及量身定制的心理或同伴支持的患者。

背景

英国有超过300万人带癌生存。这一数字还在上升，预计到2030年将达到400万，每年新诊断癌症近40万例（）。考虑到癌症相关死亡，这些数字尤为重要，据估计英国每年有16.7万人因此死亡¹。此外，与普通人群相比，接受癌症治疗的患者生活质量显著更低，除疼痛和身体功能下降外，抑郁、焦虑和社会功能障碍的风险也更高（；）。因此，这些接受癌症治疗的患者自杀风险显著增加（）。此外，这些困难可能对医疗治疗的有效性和成本产生直接的负面影响（；；），使其成为一个重要的考量因素。

癌症表现的形式和严重程度各不相同，需要采用多种治疗方法。化疗和放疗是最常见且最有效的治疗手段之一（；）。然而，这些疗法往往伴随严重的副作用，包括心脏毒性、肾毒性、骨髓抑制、神经毒性、肝毒性、胃肠道毒性、黏膜炎和脱发。这些副作用会显著影响生活质量，并可能导致长期的癌症后并发症（）。此外，手术也是一种治疗方式，可单独使用或与其他治疗配合使用，可能带来进一步的风险和并发症，并在短期乃至有时长期内影响生活质量、身体形象和整体心理健康（；）。

为了避免这些与治疗相关的重大负担，尤其是对于包含不可治愈性和惰性因素的癌症，某些形式的疾病不需要立即治疗（）。这种方法被称为“观察与等待”（W&W）、观察或主动监测，需要在设定的时间间隔内与临床团队进行定期检查，以监测疾病及其进展，并在认为治疗更有效时提供治疗（）。虽然这些术语的确切定义可能因癌症类型和方案而异，但本综述使用W&W作为涵盖所有非干预性、基于监测的管理方法的统称。W&W方法的优势在于避免某些治疗相关的显著发病率和死亡风险，同时维持生活质量（）。然而，患者往往对这种干预感到困惑，从而担心没有接受立即治疗（）。

W&W方法可能会恶化接受癌症治疗患者的心理健康。癌症对患者的心理影响相当大，据报道存在情绪障碍和焦虑，以及社会和职业方面的负面影响（；；；）。接受癌症治疗的人出现心理健康困难的几率是常人的三倍（），而这些困难往往未被报告，因为在癌症情况下被视为正常（）。此外，最近的一项元综合研究发现，处于W&W路径中的患者需要更多信息以及同伴和情感支持（），因为与更广泛的癌症人群相比，他们经历心理健康困难的风险更大（）。

关于W&W患者体验的现有证据表明，对肿瘤生长、复发以及可能手术的焦虑会带来情感负担（）。患者报告强调，在理解W&W过程和获得 reassurance 方面存在未满足的需求，而这两者对于决策都至关重要（）。Davies及其同事（）发现，对于甲状腺癌患者，对W&W的担忧会随时间减少，并且报告对该方法的总体满意度较高。然而，关于患者体验的定性研究往往聚焦于特定类型的癌症，限制了研究结果的普适性，使其难以推广。

迫切需要记录不同类型癌症患者接受W&W路径的经历，以充分了解他们的需求并确定支持他们的最佳方式。每种类型的癌症都带来独特的挑战，W&W的情感和心理影响可能差异很大。通过收集关于患者体验的全面数据，我们可以识别出在聚焦单一类型癌症时可能不明显的共同主题和独特关切。此类全面报告至关重要，因为它们可以为制定心理干预指导原则提供依据，以量身定制支持W&W路径上的患者。这些干预措施可以解决未满足的需求、减轻焦虑并提供 reassurance，最终改善这些患者的生活质量和心理健康结局。

在本综述中，我们旨在探讨不同癌症类型中W&W的总体患者体验。我们将分析和报告可能影响患者体验的共同因素，如情感负担、信息需求和满意度水平。通过识别这些共性，我们希望提供有价值的见解，以塑造支持性照护策略并增强患者和医疗保健提供者的决策过程。

方法

综述设计

本研究设计为一项定性系统综述和主题综合，针对已发表的定性研究，探讨在观察等待、主动监测、观察或等效监测路径下生活的成人癌症患者的体验。为保持一致，本综述通篇使用W&W这一术语作为总称，指代这些非干预性、基于监测的方法。本综述已在PROSPERO注册（注册号529161）。

检索策略

进行了系统检索，以识别探讨接受W&W方法的癌症患者体验的同行评审定性研究。检索策略以综合目标为依据，由一位高级信息专家与研究团队合作制定。检索了以下数据库：MEDLINE、通过Ovid访问的APA PsycInfo，以及通过EBSCOhost访问的CINAHL Plus。检索策略结合了截词、布尔运算符和数据库特定主题词，以识别与癌症、W&W或等效监测方法、心理或体验结局以及定性方法相关的研究。每个数据库的完整检索词见附录1。

纳入标准

符合以下条件的研究有资格纳入：

• 纳入年龄18岁或以上的成人参与者；

• 聚焦于被正式诊断患有任何类型癌症的参与者；

• 考察了 W&W、主动监测、观察、主动监控或等效的基于监测路径的经历；

• 呈现了原创的一手定性数据；以及

• 探讨了患者在 W&W 方式下生活的心理、情感、社会或体验方面的反应。

若研究未聚焦于成人癌症患者、未包含 W&W 或等效的基于监测路径、未报告一手定性发现，或未以可与其他参与者群体区分的方式呈现患者体验，则被排除。若研究未以英文发表，也被排除。当研究纳入临床医生、伴侣、照护者或混合参与者群体时，仅当与在 W&W 下生活的患者相关的发现被明确报告或可区分时，才予以保留。

研究筛选

检索结果经去重后导出至 Rayyan，这是一个基于网络的平台，旨在支持系统评价中记录的组织与筛选。标题和摘要根据纳入标准进行筛选，随后对可能相关的文章进行全文审查。未使用 Rayyan 内的人工智能辅助筛选功能；纳入决定由研究团队成员做出。关于纳入标准的分歧或不确定之处通过研究团队内部讨论解决。研究筛选过程见 PRISMA 流程图（图 1）。

图 1

质量评价

所有纳入研究均使用批判性评价技能计划（CASP）（）定性清单进行方法学质量评价。进行评价是为了描述纳入研究的质量和报告情况，而非排除研究或对其在综合中的贡献进行加权。由于纳入研究的质量大致相似，所有研究在分析中被同等整合。完整的质量评价见附录 2。

数据提取

数据采用定性发现包容性提取方法进行提取。这涉及提取每项纳入研究的全部发现，包括参与者叙述和作者解释。选择该方法是为了保留一手定性研究的丰富性和解释深度，并能够跨不同癌症类型和 W&W 情境进行综合。

数据分析与综合

为确保全面而细致的综合，采用定性发现包容性提取方法（）来提取数据。该方法涉及纳入每项纳入研究的全部发现，包括参与者叙述和作者解释。这确保了全面而细致的综合。

Subsequently, the extracted findings were uploaded into NVivo, qualitative data-management software used to organize, code and retrieve textual data, and were analysed using the thematic synthesis methodology outlined by . No artificial intelligence-assisted functions within NVivo were used in the analysis. Coding, organization of codes, and the development of descriptive and analytical themes were undertaken by the research team. An inductive process was adopted, beginning with line-by-line coding of extracted text in NVivo to capture meaning and content. Codes were then iteratively organized into descriptive themes by translating concepts across studies, identifying similarities and differences, and constructing a hierarchical framework. Finally, we developed analytical themes that moved beyond the content of the primary studies, using the descriptive themes as a foundation to generate higher-order insights. The synthesis therefore integrates patient narratives with interpretive layers from the original authors, while also providing new interpretations that extend beyond the primary material.

结果

共识别出474项独特研究。经过标题和摘要筛选后，保留84篇文章进行全文审查。其中，25篇符合纳入标准并被纳入综合（见图1）。

纳入的研究发表于2007年至2025年间；这一范围反映了符合纳入标准的研究的发表时间，而非预先设定的日期限制（研究特征见表1）。其中，九项（36.0%）在英国进行，七项（28.0%）在美国进行，其余来自荷兰、加拿大、希腊、澳大利亚和爱尔兰。数据收集方法包括访谈（92.0%）、焦点小组（8.0%）。虽然几乎所有研究都仅关注目标人群，但有几项研究也纳入了患者的伴侣（n = 1）和临床医生（n = 1）；然而，这些研究被保留，因为关于目标人群的研究结果报告清晰或可区分。

表1

所选文章及特征。

研究识别出五个总体主题，捕捉了接受W&W的患者的真实生活体验（表2）。第一，情绪与心理反应突显了恐惧、焦虑、接受与身份挣扎的波动状态，这些状态随时间塑造了患者的调适过程。第二，对W&W的理解与决策揭示了选择如何受到风险感知、对临床医生的信任以及与积极治疗的比较的影响。第三，关系与社会体验涵盖了被误解、隐瞒的感受，以及家人、同伴和医疗专业人员在提供支持中的关键作用。第四，与不确定性共处反映了安慰与失控之间的持续张力，尤其是在监测安排和有限信息方面。最后，应对、控制与生活调整说明了个人如何重新定义优先事项、进行生活方式改变，并将癌症重新构建为一种可管理的状况，以恢复自主感和生活质量。这些主题共同描绘了W&W复杂且不断演变的社会心理图景，强调需要超越临床监测的整体性支持。

表2

主题与子主题。

每个主题/子主题的示例引文见表3。

表3

示例性引语。

FO，一阶（参与者直接引语）；SO，二阶。

有些概念，例如对临床医生的信任，出现在不止一个主题中；出现这种情况时，主题根据该概念的分析作用加以区分，例如主题2中的决策与主题4中持续的不确定性管理。

主题1：对W&W的情绪和心理反应

患者描述了对W&W广泛的一系列情绪和心理反应。一些人在确诊后经历了深切的恐惧和震惊，而另一些人则报告了持续存在的对疾病进展的焦虑、身份认同方面的挣扎，或试图培养接纳。没有症状或没有积极治疗，常常加剧了这些感受，使患者夹在不确定性与适应之间。这一动态过程通过五个子主题加以探讨：最初的震惊与难以置信，持续存在的焦虑以及对进展或复发的恐惧，身份挣扎与冒名顶替感，随时间推移的接纳与情绪适应，以及通过否认和回避来应对。

最初的震惊与难以置信

确诊常常被体验为一种深刻的断裂，伴随着震惊、恐惧和难以置信。没有症状加剧了这种不真实感，因为患者难以将原本健康的自己与突然被贴上“癌症”标签这一事实调和起来。这个词本身带有与死亡和痛苦紧密相连的沉重联想，使一些人尽管被告知风险很低，仍“吓得僵住了”。另一些人则描述自己毫无准备、不堪重负且孤立无援，把这段经历比作情绪的“过山车”。这个具有破坏性的早期阶段，常常塑造了患者在W&W早期阶段对待它的方式。

持续存在的焦虑以及对进展或复发的恐惧

除了最初的震惊之外，许多人报告了一种持续的背景性担忧，担心癌症“在自己体内生长”。日常的疼痛不适常被解读为进展的迹象，而监测的周期性又放大了恐惧；等待结果带来强烈的焦虑，而 reassurance 往往只是暂时的。对一些人来说，生活在不可预测之中感觉就像带着一颗“定时炸弹”。尽管焦虑时起时伏，却很少消失，影响着日常生活质量，并凸显出持续心理支持的必要性。

身份挣扎与冒名顶替感

疾病的无形性在患者如何理解和表达自己作为癌症患者的身份时制造了张力。许多人因为缺乏症状或未接受积极治疗而觉得自己是“骗子”或“戏精”，这使他们更难获得社会支持。这种“冒名顶替”的体验有时导致他们隐瞒诊断，而那些公开诊断的人则常常感到被误解或被轻视。即使默默地带癌生活，也扰乱了自我认知，因为患者难以将“生病”的概念与外表正常的生活调和起来。这些身份张力凸显了W&W独特的社会心理负担——癌症既被最小化，又无法逃避。

随时间推移的接纳与情绪适应

对一些人来说，反复经历的稳定状态促成了逐渐走向接纳的转变。这一过程并不均衡，但得到了临床医生的 reassurance、将W&W重新定义为积极治疗的可管理替代方案，以及专注于日常生活等个人应对策略的支持。患者谈到学会“与癌共存”，将其融入自我认知，而不让它主导自己的身份。对一些人来说，这种接纳得益于对医疗专业人员的信任，而另一些人则强调个人应对策略，如专注于日常生活或从经历中汲取意义。然而，接纳并不意味着完全解决；焦虑和脆弱的时刻仍会不断浮现。

通过否认和回避来应对

最后一种模式涉及刻意淡化或回避疾病。患者淡化诊断的严重性，或避免思考癌症，以保护自己的正常感。虽然这些策略提供了短期缓解，但当监测或医疗讨论迫使患者面对疾病现实时，有时会制造张力。因此，否认和回避如同双刃剑——帮助患者应对当下，却限制了长期适应。

主题2：对W&W的理解与决策

患者关于W&W的决定反映了临床信息、个人价值观和社会影响之间的相互作用。这一主题具体关注患者如何将W&W理解为一种管理选项，如何将其与积极治疗进行权衡，以及如何做出或重新审视关于自身照护的决定。对一些人来说，W&W提供了一种理性的、低风险的替代方案，保住了生活质量；对另一些人来说，它感觉违反直觉，甚至像被忽视。此处对临床医生的信任主要与决策相关：患者是否感到获得了充分的信息、 reassurance和支持，从而接受监测而非立即治疗。决定并非一成不变，一些患者后来因焦虑、疾病进展或情况变化而重新评估或放弃W&W。四个子主题说明了这一过程：选择W&W而非积极治疗、临床医生的影响、家人、同伴和第二意见、对W&W的反直觉认知，以及后悔、重新评估或转向积极治疗。选择W&W而非积极治疗。

许多人将W&W描述为对风险与获益的审慎权衡。对于低级别疾病或高龄患者，它被视为一种合乎逻辑、干扰较小的手术或化疗替代方案。积极治疗往往被认为比癌症本身更具威胁，对并发症、漫长恢复期或生活质量下降的担忧使天平倾向于W&W。一些人还看重其灵活性，使他们能够推迟治疗而不关闭未来的选择。然而，即便对于接受W&W的人而言，这一选择也并非简单明了；它需要将避免治疗或“什么都不做”所带来的安心与与癌症共存的不安加以调和。

临床医生、家人、同伴及第二诊疗意见对决策的影响在这一子主题中，对临床医生的信任至关重要，因为它决定了患者是否感到能够将W&W作为一种可信且合适的管理策略加以接受。获得清晰解释和连续性照护的患者往往感到安心，将W&W视为共同决策。相比之下，仓促或轻慢的互动则会削弱信心。家人和同伴也影响选择：伴侣有时出于担忧而敦促积极治疗，而朋友或熟人的癌症经历则提供了现实世界的比较，可能左右决策。一些患者寻求第二诊疗意见以减少不确定性并做出“正确”的决定，凸显了在做出如此重大选择时的不确定感和对肯定的需求。

对W&W的反直觉认知

对一些人而言，W&W最初被认为与癌症照护的理念本身相矛盾。患者描述说，面对有诊断却不进行积极治疗的想法，他们感到困惑或沮丧，有几人将W&W等同于对自身疾病的忽视或轻描淡写。当症状不存在时，这种矛盾感尤为强烈，导致他们不相信癌症真的存在。其他人则反思了自己如何难以接受W&W，因为它与将癌症视为需要积极“抗击”之物的文化或个人期望相悖。然而，随着时间推移，一些患者逐渐将W&W视为不那么被动的等待，而更是一种与其价值观和健康状况相符的主动选择。

后悔、重新评估或转向积极治疗

围绕W&W的决策往往会演变。一些患者表达了后悔，怀疑自己是否选择正确，尤其是在焦虑加剧或看到他人接受治疗时。其他人最终停止了W&W，原因是疾病进展、临床建议，或通过切除癌症来“掌控局面”的个人愿望。对一些人来说，W&W事后被视为仅仅是在拖延不可避免之事；对另一些人来说，它仍有价值，提供了免于治疗副作用的时光。这些各异的经历凸显了W&W决策的流动性，它会随着医疗、情感和社会情境的变化而不断被重新评估。

主题3：关系与社会体验

W&W 不仅受到患者内在应对方式的影响，也受到其社会世界的影响。没有症状或治疗往往导致误解、轻视和隐形感。有些人隐瞒自己的诊断以避免污名或被轻视，而另一些人则从家人、朋友或癌症同伴中寻求支持。这些人际关系动态强烈影响了情绪健康以及管理不确定性的策略。四个子主题捕捉了这些体验：感到被误解或孤立、被他人轻视、不披露与隐瞒，以及同伴和家庭支持。

感到被误解或孤立

患者经常描述一种被误解的感觉，既来自医疗专业人员，也来自个人生活中的人。由于他们没有接受积极治疗，他们的挣扎往往被忽视，使他们感到隐形或不被承认。文化期望也发挥了作用，一些人描述了“继续过日子”或隐藏脆弱性的压力，这导致了孤立。独居或缺乏强大支持网络加剧了这些挑战，使患者只能私下应对担忧、不确定性和实际负担。这种社会孤立不仅在情绪上令人疲惫，还强化了与其他癌症患者“不同”的感觉。

被他人轻视

缺乏症状和没有治疗往往导致他人（包括临床医生、家人和朋友）轻视诊断的严重性。患者回忆被告知他们“幸运”，或者他们的癌症“没什么可担心的”，虽然有时是出于安慰，但往往让人感到被轻视和否定。媒体将癌症描绘为戏剧性和危及生命的疾病，进一步促成了W&W癌症不是“真正的癌症”的看法。这种轻视对许多人来说是痛苦的，因为它否定了与癌症共存的心理负担，并使他们感到被排除在更广泛的癌症社区之外。对一些人来说，这种缺乏认可成为沮丧和怨恨的来源。

不披露与社会隐瞒

面对误解和轻视，一些患者选择不向他人披露自己的诊断。隐瞒被描述为一种保护家人免受担忧、避免污名或不想要的同情的方式。对于没有症状的人来说，更容易让癌症保持隐形，将其视为私事而非共享之事。然而，不披露也带来了情绪代价，往往加深了孤独感，并剥夺了患者潜在的支持。这样，隐瞒既可以作为一种应对机制，也可以成为社会联系的障碍。

同伴和家庭支持

尽管存在这些挑战，许多患者仍强调来自家人、朋友和同伴支持的重要性。家庭支持可能是一把双刃剑：有时提供安慰和实际帮助，但有时又会变得过度保护，或成为要求患者追求积极治疗的压力来源。同伴支持，尤其是通过与其他接受W&W的患者建立联系，常被描述为具有独特价值，因为它提供了理解、认可和分享应对策略的机会。与同伴的接触，无论是在候诊室里的非正式交流，还是通过有组织的团体，都帮助患者感到不那么孤单，也更有能力应对W&W的不确定性。这些发现强调，虽然人际关系可能加剧隐形感，但它们也为应对和调整提供了关键资源。

主题4：与不确定性共存

不确定性是W&W生活的决定性特征，在做出监测的初步决定后，它既塑造了日常生活，也影响了长期前景。本主题聚焦于患者如何应对等待、监测和不知情所带来的持续心理负担。患者描述了在安心与恐惧之间来回摇摆，试图在正常生活与对癌症的警觉之间取得平衡。在本主题中，临床医生沟通和监测被视为与持续的不确定性管理相关，而非与治疗决策相关。监测可以通过定期检查提供安慰，但也会引发焦虑，尤其是在延迟或间隔很久时。四个子主题说明了这些动态：缺乏控制感与平静和恐惧之间的摇摆、生活在疾病与健康之间、监测程序和结果带来的急性焦虑，以及监测的心理循环。

缺乏控制感，在平静与恐惧之间摇摆

患者经常将不确定性描述为安心时刻与恐惧时期之间的挣扎。在这里，临床医生沟通之所以重要，是因为它塑造了患者忍受持续不确定性的能力，而不是因为它决定了最初选择W&W的决定。一些患者认为，当临床医生沟通清晰时，他们更有能力管理不确定性；而另一些患者则在信息有限或不一致时感到沮丧。对自身健康失去控制的感觉十分突出，患者有时会进行仪式或调整生活方式，试图重新获得掌控感。然而，这些策略往往与癌症不可预测的本质相冲突，形成安心之后又再度担忧的循环。这种摇摆凸显了患者试图在接受与焦虑之间维持的脆弱平衡。

生活在疾病与健康之间

W&W将患者置于一个中间地带，既非完全患病，也非完全健康。许多人恢复了日常作息、工作和社会活动，强调尽管有诊断，他们仍能过“正常”生活。然而，癌症的存在以微妙但持续的方式扰乱了这种正常状态：疲劳、对身体状况的觉察或生活方式限制（例如难以获得保险）都提醒着他们自己的疾病。对一些人来说，W&W强化了癌症是一种慢性、可控疾病的看法；而对另一些人来说，症状的不可见模糊了健康与疾病之间的界限。这种模糊状态既为韧性提供了机会，也对身份认同构成了挑战。

监测程序和结果带来的急性焦虑

监测被描述为既是安心的来源，也是焦虑的触发因素。对检查结果的预期常常引发更强烈的恐惧，一些患者将监测预约比作“重新经历诊断”。虽然清晰或稳定的结果能带来暂时的宽慰，但这种安心是脆弱的，往往只能持续到下一次检查到期。延迟或取消会加剧痛苦，使患者感到被医疗系统忽视或抛弃。然而，另一些人则将监测描述为例行公事，是他们认为必要且接受的过程的一部分，甚至因为提供了结构和一种警觉感而令人安心。应对策略各不相同，有些人倾向于减少检查频率以减轻焦虑，而另一些人则寻求更频繁的检查以维持控制感。

监测的心理循环

W&W 的首要挑战是等待的持久重负。患者将 W&W 描述为一种长期的悬而未决状态，其特征是对疾病进展、未来治疗和预期寿命的不确定性。信息的缺乏（尤其是在诊断时）加剧了这一负担，使一些人感到被蒙在鼓里，难以规划未来。对另一些人来说，将癌症“放在心底”的感觉无法避免，即使生活表面上看似未变，也塑造着日常思绪。这种等待的负担有时被体验为比癌症本身更难以承受，凸显了长期不确定性带来的心理代价。

Theme 5: coping, control, and life adjustments

Patients adopted a range of strategies to cope with W&W and regain control in the face of uncertainty. These included lifestyle changes, reframing cancer to foster acceptance, seeking information or planning, and reprioritising life goals and identity. Coping approaches varied in effectiveness, revealing both resilience and vulnerability in how patients adapted over time.

Lifestyle adjustments and health behaviors

Many patients responded to their diagnosis by adopting lifestyle changes they believed could positively influence their prognosis or give them a sense of control. These included changes in diet, exercise, stress management, or complementary therapies. While evidence for these strategies was sometimes uncertain, patients described them as empowering and a way of “doing something” in the face of watchful waiting. For some, these adjustments reduced anxiety and provided a sense of agency, whereas for others they became sources of guilt or pressure when goals were difficult to sustain.

Reframing cancer and cultivating acceptance

Reframing cancer as indolent, chronic, or even as a condition that could be “lived with” was a central coping strategy. Patients described efforts to shift their mindset away from fear and toward acceptance, sometimes by emphasizing the benign nature of their disease or comparing themselves favorably to others with more aggressive cancers. Acceptance was often supported by clinician reassurance and time, as stability reinforced the idea that W&W was safe. However, reframing was not always stable; moments of fear or reminders of illness could unravel this sense of acceptance.

Seeking agency through information or planning

Some patients coped by actively seeking information, researching treatment options, or planning for future contingencies. This forward planning provided comfort and reduced the sense of passivity associated with W&W. Others, however, found that too much information heightened anxiety, preferring instead to rely on clinicians’ expertise. Information-seeking was therefore both a tool for agency and a potential source of distress, highlighting the individual variability in how patients sought to regain control.

Reprioritising life and identity

W&W often prompted patients to reassess priorities and reconfigure their sense of self. For some, the diagnosis served as a “wake-up call” that encouraged them to focus more on family, relationships, or meaningful activities. Others described a shift in identity, moving from viewing themselves primarily as patients to reclaiming roles as partners, workers, or community members. This reprioritisation was not always easy, particularly for those who continued to feel overshadowed by cancer, but for many it represented a key step in adaptation, enabling them to live more fully despite uncertainty.

Discussion

Findings in relation to previous research

This review synthesized qualitative evidence on the lived experience of patients undergoing W&W across cancer types. Five overarching themes captured the multifaceted psychosocial impact of W&W. Patients reported a spectrum of emotional responses, from initial shock and anxiety to identity struggles, acceptance, and avoidance. Decision-making was shaped by trust in clinicians, family and peer influence, and shifting perceptions of risk, with some revisiting choices over time. Social relationships were central: many experienced minimisation or misunderstanding, sometimes concealing their diagnosis, yet also drew strength from family and peer support. Uncertainty was a defining challenge, marked by oscillations between reassurance and fear, the liminal experience of being neither fully ill nor well, and the burden of monitoring and waiting. Finally, patients sought to regain control through coping strategies such as lifestyle changes, reframing cancer as manageable, and reprioritising life goals. Taken together, these findings highlight that W&W is not a passive state of “doing nothing,” but an active psychosocial process requiring continuous adaptation.

The contribution of this synthesis does not lie in claiming that each individual theme is wholly new to psycho-oncology. Rather, its contribution is in bringing together qualitative evidence across cancer types and W&W pathways to show that these experiences may form a broader cross-cancer psychosocial pattern. Anxiety, uncertainty, identity disruption, social misunderstanding, and reliance on clinician reassurance have each been described in specific cancer contexts, but this review demonstrates that they recur across different forms of monitored, untreated, or deferred-treatment cancer care. This suggests that W&W is not only a disease-specific clinical pathway, but also a shared psychosocial condition in which patients must live with cancer while being asked to wait, monitor, and adapt. This cross-cancer synthesis provides a basis for developing broader supportive-care principles, including clearer communication, validation of uncertainty, peer support, and psychological interventions that can be adapted across cancer pathways. Our findings reinforce and extend previous work demonstrating that W&W can be experienced as both a relief and a burden. Prior reviews have identified heightened risks of anxiety and depression among hematological patients managed under W&W compared to other cancer populations (). Similarly, prostate cancer studies have highlighted unmet informational needs, the importance of trust in clinicians, and ambivalence around decision-making (). By synthesizing across diverse cancer types, this review uniquely demonstrates that these psychosocial challenges are not confined to a single diagnostic group but are fundamental to the W&W experience itself. This finding strongly suggests that cross-cancer supportive interventions are both feasible and necessary. Patients across conditions report oscillating between reassurance and fear, struggles with being seen as “real” cancer patients, the ongoing psychological weight of waiting, and the challenge of adapting life in the absence of active treatment.

In addition, this synthesis adds nuance by emphasizing coping and life adjustments as an integral part of the W&W experience. While previous studies have noted the role of acceptance and adaptation (), these findings demonstrate the breadth of strategies patients employ ranging from lifestyle changes to meaning-making and reprioritisation of values. These adjustments align with findings in survivorship literature, where cancer prompts re-evaluation of identity and life goals (). However, unlike traditional survivorship, patients on W&W remain under the shadow of active disease, complicating their efforts to construct stable narratives of health and identity.

Strength and limitations

A strength of this review is its broad scope, integrating qualitative findings across cancer types to provide a comprehensive picture of the W&W experience. This allowed us to identify commonalities (such as anxiety about progression, struggles with identity, and lifestyle adaptation) that transcend diagnostic boundaries. The use of rigorous thematic synthesis methods also enabled the development of analytic themes that extend beyond the descriptive findings of individual studies.

However, several limitations should be acknowledged. Most included studies were conducted in high-income countries, limiting transferability to different cultural, socioeconomic and healthcare contexts. Although the broad themes identified in this review may be recognizable across settings, their form, intensity and practical consequences are likely to differ according to healthcare infrastructure, financial burden, family involvement, informal support, stigma and access to specialist oncology and psychosocial care. This is consistent with wider psycho-oncology literature showing that unmet psychosocial needs are shaped by access barriers and unequal availability of supportive care (), and with evidence that cancer care can impose substantial financial toxicity in low- and middle-income countries (). Future research should therefore examine W&W experiences across more diverse geographical and socioeconomic contexts. Additionally, while synthesis allows for the identification of overarching patterns, nuances specific to individual cancer pathways may have been diluted.

Clinical and research implications

These findings carry important implications for clinical practice. First, clinicians should be mindful that recommending W&W is not a neutral intervention but one that carries psychological consequences. Patients benefit when W&W is framed as an active, evidence-based choice rather than passive inaction. Clinician reassurance, continuity of care, and opportunities to ask questions repeatedly over time appear central to promoting acceptance and reducing anxiety.

Second, relational and social dimensions warrant greater attention. Structured peer support groups, either diagnosis-specific or cross-diagnostic, could provide validation and reduce feelings of invisibility. Incorporating family members into decision-making discussions may also mitigate tensions between patients’ preferences and relatives’ anxieties.

Third, psychological interventions tailored to W&W patients are needed. Our finding that patients often engage in denial or avoidance to manage distress provides a clear therapeutic target - interventions like Acceptance and Commitment Therapy (ACT) are designed to help patients by reducing unhelpful experiential avoidance and increasing psychological flexibility (the ability to draw on a broader and more workable repertoire of coping responses) (; ; ; ). In addition, clinicians may wish to support patients’ efforts to regain control through lifestyle adjustments and future planning, recognizing these strategies as active coping rather than trivial lifestyle choices.

From a research perspective, future work should investigate longitudinal experiences of W&W, examining how psychological and social adjustment evolves over years rather than months. Greater attention is also required to diverse cancer types and underrepresented populations, as much of the existing literature is concentrated in prostate and hematological cancers. Additionally, evaluating psychosocial interventions specifically designed for W&W patients would provide evidence for targeted supportive care.

Conclusion

This review demonstrates that W&W, while medically appropriate and often protective of quality of life, carries a distinctive psychosocial burden. Patients grapple with fluctuating anxiety, disrupted identity, relational misunderstandings, the enduring weight of uncertainty, and the challenge of reconstructing agency and meaning in daily life. Yet, many also adapt over time, reframing W&W as a manageable, even empowering, approach. To support this adaptation, clinicians and services must move beyond a biomedical framing of W&W to address its psychological and social dimensions. Tailored interventions, enhanced communication, and structured peer support represent promising avenues to improve the lived experience of patients on W&W pathways.

Statements

Author contributions

CB: Writing – review & editing, Writing – original draft, Methodology, Formal analysis. MC: Project administration, Visualization, Validation, Data curation, Writing – review & editing. AK: Validation, Project administration, Methodology, Writing – review & editing. AN: Writing – review & editing, Validation, Formal analysis, Methodology. NT: Validation, Data curation, Investigation, Writing – review & editing. NM: Methodology, Investigation, Validation, Writing – review & editing, Supervision.

Funding

The author(s) declared that financial support was not received for this work and/or its publication.

Conflict of interest

The author(s) declared that this work was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Generative AI statement

The author(s) declared that Generative AI was not used in the creation of this manuscript.

Any alternative text (alt text) provided alongside figures in this article has been generated by Frontiers with the support of artificial intelligence and reasonable efforts have been made to ensure accuracy, including review by the authors wherever possible. If you identify any issues, please contact us.

Publisher’s note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Supplementary material

The Supplementary material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fpsyg.2026.1830770/full#supplementary-material

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Keywords

cancer treatment, psycho oncology, qualitative synthesis, thematic analysis, watching wait

Citation

Boutry C, Covington M, Kochar A, Nicholson A, Thorpe N and Moghaddam N (2026) Living with Cancer under watch and wait: a qualitative systematic review and thematic synthesis. Front. Psychol. 17:1830770. doi: 10.3389/fpsyg.2026.1830770

Received

14 March 2026

Revised

29 August 2026

Accepted

31 August 2026

Published

05 October 2026

Volume

17 - 2026

Updates

Copyright

© 2026 Boutry, Covington, Kochar, Nicholson, Thorpe and Moghaddam.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: Clement Boutry, clem.derby@gmail.com

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