癌症护理中需要高质量的自我管理支持

癌症晚期也要关注生活质量：舒适护理和疼痛管理同等重要。 #生活知识# #科技生活# #健康生活技巧# #癌症#

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The number of people living with and beyond cancer is rising rapidly. With earlier detection and better treatments many people are living for years following a diagnosis of cancer. Healthcare systems need to adapt to manage this demand and better meet the needs of this growing population.1

The consequences of cancer and its treatment are common, can arise at any point and may be long lasting.2 They can have a significant impact on daily life and include a range of physical symptoms and late effects such as pain, fatigue, bowel dysfunction; psychological concerns such as anxiety, depression and fear of recurrence; and social impacts including disruption to previously enjoyed activities, ability to work and relationships.3 Lifestyle changes and long-term medications to reduce the risk of recurrence, hospital appointments, routine surveillance and monitoring for signs of potential disease progression can create additional burden. People may lack confidence and struggle to manage the impact on their daily lives resulting in disrupted lives and futures.4 This can exacerbate mental health problems such as depression and anxiety. Low confidence to self-manage and depression have been associated with worse health and well-being outcomes up to 2 years after diagnosis.5 In addition, as most people are diagnosed with cancer in later life, many are also living with long-term conditions which can exacerbate problems further.6 Understanding how best to support people to manage the consequences of cancer and its treatment to reduce health crises and quality of life is a global concern.7

The good news is that appropriate support can reduce health crises, enhance confidence to manage and improve mental health, quality of life and other outcomes.8 9 The National Health Service (NHS) Long Term Plan10 states that by 2021 ‘where appropriate every person diagnosed with cancer will have access to personalized care, including needs assessment, a care plan, and health and well-being information and support’ (p 61). Tailoring support and care according to need as soon as possible following diagnosis presents an opportunity to enhance confidence to manage consequences of cancer, mental health and quality of life outcomes during treatment.11 This support should continue beyond treatment because the consequences of treatment may persist over time, late effects may emerge which require self-management and long-term lifestyle changes are usually required to reduce the risk of recurrence. New models of care are being developed and tested to support people after treatment and the evidence base is growing.12–14

Self-management is a term used to describe what people living with long-term conditions do to manage their condition. It includes ‘the individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition’ (p 177).15 Self-management has more recently been applied in the context of cancer and additionally includes routine surveillance and self-monitoring for signs of disease progression to reduce the risk of recurrence. The benefits of successful self-management include reduced crises involving emergency admissions to hospital, improved quality of life and greater confidence to manage the impact of cancer on everyday life in spite of challenging consequences and the associated disruption.16 17

While it is recognised that people need support to manage the wide-ranging impact on their everyday lives, self-management support is inconsistently delivered in cancer care.7 A recent global call to action has highlighted the need for improved quality of self-management support to enable people to develop the knowledge, confidence and skills they need for optimal self-management.7 Without adequate self-management support, patients with cancer and survivors may struggle to manage the impact of cancer and treatment in their daily lives resulting in poorer health and well-being and poorer quality of survival.4

There is evidence that the right self-management support at the right time enables people to manage consequences of cancer during treatment and beyond.8 12 13 Howell et al 18 demonstrate that both organisational and clinician barriers and enablers need to be considered in advance of implementation of self-management support to inform specific strategies for implementation within cancer care. The three cancer centres in Howell et al’s18 study each identified barriers and enablers to implementation and readiness to change which require different approaches to support implementation. Howell et al 18 highlight key considerations, based on their experience in ambulatory cancer care involving patients with colorectal, lung and lymphoma cancer, that need to be acknowledged and planned for prior to implementation of self-management support in cancer care. First, healthcare professionals and the organisations in which they work need support in shifting from a paternalistic culture to one that engages patients as partners in their care. Second, healthcare professionals and those in administration and management need to understand what self-management support is, what it involves and what the benefits could be for people living with and beyond cancer. Third, recognition that healthcare professionals need support, tools and skills to enhance their practice of self-management support.

Howell et al’s18 study focuses on the preimplementation phase in a treatment setting. We can also learn from a UK study which assessed the introduction of supported self-management to the follow-up care pathway. The traditional approach to follow-up care where all patients have routine follow-up appointments and regular surveillance does not adequately address patients’ needs and is not sustainable given the growing number of cancer survivors.19 The TrueNTH UK Supported Self-management and Follow-up Care Pathway (TrueNTH UK pathway) was introduced into parts of the NHS for men who have had primary prostate cancer treatment and are suitable for self-managed follow-up.20 The TrueNTH UK pathway includes a Band 4 support worker who is the key point of contact and support for men after treatment; a 4-hour workshop which provides information and supports the development of men’s skills and confidence to self-manage; remote monitoring with hospital appointments only when test results indicate further investigation is necessary; access to test results through an online portal; and holistic needs assessment made through contact with the support worker. This new model of care has been shown to be more efficient and cost-effective than traditional follow-up and is acceptable to patients.12 It has also been adapted for patients with colorectal and breast cancer. A toolkit to support implementation of supported self-managed follow-up has been produced.20

The findings from Howell et al’s18 study and the TrueNTH UK pathway align with a recent call to action from an international group of researchers and healthcare professionals—the Global Partners for Self-Management in Cancer—regarding workforce development and readying healthcare providers for successful self-management support.7 These include:

A necessary cultural shift

Howell et al 18 highlight the need for healthcare professionals and the organisations in which they work to shift from a paternalistic culture to a partnership arrangement where patients and healthcare professionals work together. This partnership will engage patients in their care and recovery to identify what matters to them, rather than what is the matter with them, and support them to be effective and confident self-managers equipped with the skills they need.7 8

To achieve this, Howell et al 18 emphasise the need for healthcare professionals as well as healthcare organisation administrators and managers to be involved in the design of new self-management programmes. This will allow a full understanding of concerns, barriers and enablers for the implementation of self-management support. Subsequent implementation strategies will engage with professional and organisational understanding of what self-management support is, why it matters, and attempt to overcome barriers arising from this understanding.

Early barriers experienced in implementing the TrueNTH UK pathway included lack of buy-in from clinicians; concerns about patient safety; concern that health professionals would have limited contact with those patients doing well after treatment; concern that introduction of the pathway could result in reduced funding; lack of understanding of the components of the new pathway; challenges of having to navigate multiple administrative systems; and challenges implementing and integrating the information technology (IT) system. These barriers were identified in the early stages of implementation and where these challenges were overcome, the pathway was successfully introduced, was acceptable to patients and reduced costs.12 Howell et al’s study suggests that these barriers, both in terms of healthcare professional and organisational readiness to change, could have been identified at an earlier stage and strategies developed to inform smoother uptake prior to implementation.

Enablers to support the cultural shift needed to implement the TrueNTH UK pathway included identifying clinical leads to support early engagement with a wide range of stakeholders including commissioners, clinical governance and service improvement leads, IT to support integration of self-management support into digital systems and administrative support to overcome the complexity brought about by multiple administrative systems. A working group led by a healthcare professional (eg, urologist, oncologist, clinical nurse specialist) responsible for implementation of the TrueNTH UK pathway and taking decisions on the development of clinical guidelines and governance protocols supported the implementation and delivery of safe and effective follow-up care. This group also supported teams to maximise understanding of the new pathway and what it entails, as well as collection of data to support accurate cost modelling.

Preparing the workforce

Howell et al 18 emphasise that for successful implementation, a common understanding of what self-management in cancer care means, why it is important and what good self-management support looks like is a necessary starting point. Healthcare professionals need support to acquire the knowledge and skills required to enable patients to self-manage effectively and agree core curricula to support this.7

TrueNTH UK also emphasised the importance of wide stakeholder engagement to identify concerns and needs of different stakeholders throughout this process to develop a common understanding and identify local need and encourage buy-in. A local clinical champion to help drive this forward is beneficial to support clinical teams responsible for implementation to understand what is required and involve them in early discussions to shape the pathways, guidance and associated protocols.20

Core set of outcome measures

Both Howell et al 18 and TrueNTH UK highlighted the importance of data to demonstrate the benefits of supported self-management, such as reduced emergency admissions. In order to determine whether or not self-management support is effective, consensus as to desired outcomes also needs to be established. An agreed core set of patient-reported outcome measures is also required. Evidence suggests that self-efficacy to manage the consequences of cancer and its treatment should be included as one indicator of successful self-management as it is both amenable to intervention and is a key predictor of health and well-being outcomes.5 21

Expand reach and access to self-management support

Both SMARTCare (Howell et al 18) and TrueNTH UK pathway are designed to form part of routine care. The TrueNTH UK pathway has been integrated into routine care and is therefore not an optional extra: all eligible patients are placed on the pathway. Patients are supported to understand what self-management support is and how to engage with it. In contrast, optional programmes tend to attract well-educated patients who already self-manage well.22 Consequently, those implementing self-management support need to consider the diversity of need within the population served so that those with greatest need are the focus of attention. The needs of the population served need to be assessed with involvement of those typically under-represented. Meaningful patient engagement to uncover needs should feed into the development of self-management support. Self-management support needs to come in a number of forms including workshops, digital support and one-to-one clinical conversations that are culturally sensitive and inclusive of those with low health literacy.

Conclusion

For self-management support to be a success, we need to anticipate, uncover and overcome organisational and healthcare professional barriers to implementation, have a clear understanding of what good looks like, have agreement regarding how to evidence successful self-management support and gather evidence of good practice so that this can be shared, replicated and adapted as appropriate. Champions in organisations across the globe are needed to lead the way in high-quality and consistent self-management support to improve the lives of those living with and beyond cancer.

全文翻译（仅供参考）

       癌症患者和癌症以外的人数正在迅速增加。随着早期发现和更好的治疗，许多人在被诊断出癌症后还能活好几年。医疗保健系统需要适应管理这种需求并更好地满足不断增长的人口的需求。

       1癌症及其治疗的后果很常见，可能在任何时候出现，并且可能持续很长时间。2它们会对日常生活产生重大影响，包括一系列身体症状和后期影响，例如疼痛、疲劳、肠功能障碍；心理问题，例如焦虑、抑郁和害怕复发；和社会影响，包括对以前喜欢的活动、工作能力和人际关系的破坏。3生活方式的改变和降低复发风险的长期药物治疗、医院预约、常规监测和监测潜在疾病进展的迹象可能会造成额外的负担。人们可能缺乏信心，难以应对对日常生活的影响，从而扰乱了生活和未来。4这会加剧抑郁和焦虑等心理健康问题。自我管理信心低下和抑郁症与诊断后长达 2 年的健康状况和幸福感较差有关。5此外，由于大多数人在晚年被诊断出患有癌症，因此许多人还患有长期疾病，这可能会进一步加剧问题。6了解如何最好地支持人们管理癌症及其治疗的后果以减少健康危机和生活质量是全球关注的问题。

       好消息是，适当的支持可以减少健康危机，增强管理和改善心理健康、生活质量和其他结果的信心。8 9国家卫生服务 (NHS) 长期计划10指出，到 2021 年，“在适当的情况下，每个被诊断患有癌症的人都将获得个性化的护理，包括需求评估、护理计划以及健康和福祉信息和支持” （第 61 页）。在诊断后尽快根据需要量身定制支持和护理，这为增强信心以管理癌症的后果、心理健康和治疗期间的生活质量结果提供了机会。11这种支持应该在治疗后继续存在，因为治疗的后果可能会随着时间的推移而持续存在，可能会出现需要自我管理的后期影响，并且通常需要长期改变生活方式以降低复发的风险。正在开发和测试新的护理模式以支持治疗后的人们，并且证据基础正在增长。

       自我管理是一个术语，用于描述患有长期疾病的人为管理自己的疾病所做的事情。它包括“个人管理慢性病所固有的症状、治疗、身体和心理社会后果以及生活方式改变的能力”（第 177 页）。15自我管理最近被应用于癌症的背景下，此外还包括常规监测和自我监测疾病进展的迹象，以降低复发的风险。成功的自我管理的好处包括减少涉及紧急入院的危机、提高生活质量和更有信心管理癌症对日常生活的影响，尽管具有挑战性的后果和相关的破坏。

       虽然人们认识到人们需要支持来管理对他们日常生活的广泛影响，但在癌症护理中提供的自我管理支持并不一致。7最近的全球行动呼吁强调需要提高自我管理支持的质量，以使人们能够发展最佳自我管理所需的知识、信心和技能。7如果没有足够的自我管理支持，癌症患者和幸存者可能难以管理癌症和治疗对他们日常生活的影响，从而导致更差的健康和福祉以及更差的生存质量。

       有证据表明，在正确的时间提供正确的自我管理支持使人们能够在治疗期间及以后管理癌症的后果。8 12 13 Howell等人 18证明，在实施自我管理支持之前，需要考虑组织和临床医生的障碍和促成因素，以便为癌症护理中的具体实施策略提供信息。Howell等人的18 项研究中的三个癌症中心各自确定了实施的障碍和促成因素，以及对变革的准备情况，这需要不同的方法来支持实施。豪厄尔等人 18根据他们在涉及结直肠癌、肺癌和淋巴瘤患者的门诊癌症护理方面的经验，强调在癌症护理中实施自我管理支持之前需要承认和计划的关键考虑因素。首先，医疗保健专业人员和他们工作的组织需要支持，才能从家长式文化转变为让患者作为他们的护理合作伙伴的文化。其次，医疗保健专业人员和行政和管理人员需要了解自我管理支持是什么，它涉及什么，以及对癌症患者和癌症患者的益处。第三，认识到医疗保健专业人员需要支持、工具和技能来加强他们的自我管理支持实践。

       豪威尔等人的18研究的重点是在处理设定preimplementation相。我们还可以从英国的一项研究中学习，该研究评估了将支持性自我管理引入后续护理途径的情况。所有患者都进行常规随访预约和定期监测的传统随访护理方法不能充分满足患者的需求，并且鉴于癌症幸存者人数的增加是不可持续的。19 TrueNTH UK 支持的自我管理和随访护理途径（TrueNTH UK 途径）被引入 NHS 的部分内容，用于接受原发性前列腺癌治疗并适 合自我管理随访的男性。20TrueNTH UK 途径包括一名 4 级支持人员，他是治疗后男性联系和支持的关键点；一个 4 小时的研讨会，提供信息并支持男性发展自我管理技能和信心；仅当检测结果表明需要进一步调查时，才可通过医院预约进行远程监控；通过在线门户访问测试结果；通过与支持人员联系进行的整体需求评估。这种新的护理模式已被证明比传统的随访更有效、更具成本效益，并且为患者所接受。12它也适用于结直肠癌和乳腺癌患者。已经制作了一个支持实施支持的自我管理后续行动的工具包。20

       Howell等人的18研究结果和 TrueNTH UK 途径与国际研究人员和医疗保健专业人员团体（癌症自我管理全球合作伙伴）最近的行动呼吁相一致，该组织关于劳动力发展和医疗保健提供者准备成功的自我管理支持。7其中包括：

必要的文化转变

       Howell等人 18强调医疗保健专业人员和他们工作的组织需要从家长式文化转变为患者和医疗保健专业人员一起工作的伙伴关系安排。这种伙伴关系将让患者参与他们的护理和康复，以确定对他们来说重要的事情，而不是他们的问题，并支持他们成为具备所需技能的有效和自信的自我管理者。

       为了实现这一目标，Howell等人 18强调需要医疗保健专业人员以及医疗保健组织的管理者和管理者参与新的自我管理计划的设计。这将有助于全面了解实施自我管理支持的顾虑、障碍和促成因素。随后的实施策略将涉及对自我管理支持是什么、为什么重要的专业和组织理解，并试图克服这种理解产生的障碍。

       实施 TrueNTH UK 途径的早期障碍包括缺乏临床医生的支持；对患者安全的担忧；担心卫生专业人员与治疗后表现良好的患者接触有限；担心引入该途径可能导致资金减少；对新途径的组成部分缺乏了解；必须驾驭多个管理系统的挑战；实施和集成信息技术 (IT) 系统的挑战。这些障碍在实施的早期阶段就已经确定，在克服这些挑战的地方，成功引入了该途径，患者可以接受并降低了成本。12豪厄尔等人的研究表明，这些障碍，无论是在医疗保健专业人员和组织变革准备方面，都可以在早期阶段确定，并制定战略，以便在实施之前更顺利地采用。

       支持实施 TrueNTH UK 途径所需的文化转变的推动因素包括确定临床线索以支持与包括专员、临床治理和服务改进线索在内的广泛利益相关者的早期接触、支持将自我管理支持整合到数字系统中的 IT 以及行政支持，以克服多个行政系统带来的复杂性。由医疗保健专业人员（例如，泌尿科医生、肿瘤科医生、临床护士专家）领导的工作组负责实施 TrueNTH UK 途径并就制定临床指南和治理协议做出决定，支持实施和提供安全有效的后续治疗起来照顾。该小组还支持团队最大限度地了解新途径及其含义，

准备劳动力

       Howell等人 18强调，为了成功实施，对癌症护理中的自我管理意味着什么、为什么它很重要以及良好的自我管理支持是什么样的达成共识是必要的起点。医疗保健专业人员需要获得支持，以获取使患者能够有效地自我管理所需的知识和技能，并同意核心课程来支持这一点。

       TrueNTH UK 还强调了广泛的利益相关者参与的重要性，以在整个过程中确定不同利益相关者的关注和需求，以形成共识并确定当地需求并鼓励支持。帮助推动这一进程的当地临床冠军有助于支持负责实施的临床团队了解需要什么，并让他们参与早期讨论以制定途径、指导和相关协议。

核心结果测量集

       Howell等人 18和 TrueNTH UK 都强调了数据的重要性，以证明支持自我管理的好处，例如减少紧急入院。为了确定自我管理支持是否有效，还需要就预期结果达成共识。还需要一套商定的核心患者报告结果措施。有证据表明，管理癌症及其治疗后果的自我效能感应作为成功自我管理的一项指标，因为它既易于干预，又是健康和福祉结果的关键预测指标。

扩大范围并获得自我管理支持

       SMARTCare (Howell et al 18 ) 和 TrueNTH UK 途径都被设计成常规护理的一部分。TrueNTH UK 途径已被整合到常规护理中，因此不是可选的额外措施：所有符合条件的患者都被安排在该途径上。支持患者了解自我管理支持是什么以及如何参与。相比之下，自选项目往往会吸引受过良好教育、自我管理良好的患者。22因此，那些实施自我管理支持的人需要考虑服务人群中需求的多样性，以便那些最需要的人成为关注的焦点。需要在代表性不足的人的参与下评估所服务人群的需求。发现需求的有意义的患者参与应该有助于自我管理支持的发展。自我管理支持需要以多种形式出现，包括研讨会、数字支持和一对一的临床对话，这些形式具有文化敏感性，并包含健康素养较低的人。

结论

       为了使自我管理支持取得成功，我们需要预测、发现和克服组织和医疗保健专业实施的障碍，清楚地了解好的情况，就如何证明成功的自我管理支持和收集证据达成一致好的做法，以便可以共享、复制和酌情调整。需要全球组织的拥护者带头提供高质量和一致的自我管理支持，以改善癌症患者和癌症患者的生活。

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