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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.

全文翻譯（僅供參考）

       癌癥患者和癌癥以外的人數(shù)正在迅速增加。隨著早期發(fā)現(xiàn)和更好的治療，許多人在被診斷出癌癥后還能活好幾年。醫(yī)療保健系統(tǒng)需要適應(yīng)管理這種需求并更好地滿(mǎn)足不斷增長(zhǎng)的人口的需求。

       1癌癥及其治療的后果很常見(jiàn)，可能在任何時(shí)候出現(xiàn)，并且可能持續(xù)很長(zhǎng)時(shí)間。2它們會(huì)對(duì)日常生活產(chǎn)生重大影響，包括一系列身體癥狀和后期影響，例如疼痛、疲勞、腸功能障礙；心理問(wèn)題，例如焦慮、抑郁和害怕復(fù)發(fā)；和社會(huì)影響，包括對(duì)以前喜歡的活動(dòng)、工作能力和人際關(guān)系的破壞。3生活方式的改變和降低復(fù)發(fā)風(fēng)險(xiǎn)的長(zhǎng)期藥物治療、醫(yī)院預(yù)約、常規(guī)監(jiān)測(cè)和監(jiān)測(cè)潛在疾病進(jìn)展的跡象可能會(huì)造成額外的負(fù)擔(dān)。人們可能缺乏信心，難以應(yīng)對(duì)對(duì)日常生活的影響，從而擾亂了生活和未來(lái)。4這會(huì)加劇抑郁和焦慮等心理健康問(wèn)題。自我管理信心低下和抑郁癥與診斷后長(zhǎng)達(dá) 2 年的健康狀況和幸福感較差有關(guān)。5此外，由于大多數(shù)人在晚年被診斷出患有癌癥，因此許多人還患有長(zhǎng)期疾病，這可能會(huì)進(jìn)一步加劇問(wèn)題。6了解如何最好地支持人們管理癌癥及其治療的后果以減少健康危機(jī)和生活質(zhì)量是全球關(guān)注的問(wèn)題。

       好消息是，適當(dāng)?shù)闹С挚梢詼p少健康危機(jī)，增強(qiáng)管理和改善心理健康、生活質(zhì)量和其他結(jié)果的信心。8 9國(guó)家衛(wèi)生服務(wù) (NHS) 長(zhǎng)期計(jì)劃10指出，到 2021 年，“在適當(dāng)?shù)那闆r下，每個(gè)被診斷患有癌癥的人都將獲得個(gè)性化的護(hù)理，包括需求評(píng)估、護(hù)理計(jì)劃以及健康和福祉信息和支持” （第 61 頁(yè)）。在診斷后盡快根據(jù)需要量身定制支持和護(hù)理，這為增強(qiáng)信心以管理癌癥的后果、心理健康和治療期間的生活質(zhì)量結(jié)果提供了機(jī)會(huì)。11這種支持應(yīng)該在治療后繼續(xù)存在，因?yàn)橹委煹暮蠊赡軙?huì)隨著時(shí)間的推移而持續(xù)存在，可能會(huì)出現(xiàn)需要自我管理的后期影響，并且通常需要長(zhǎng)期改變生活方式以降低復(fù)發(fā)的風(fēng)險(xiǎn)。正在開(kāi)發(fā)和測(cè)試新的護(hù)理模式以支持治療后的人們，并且證據(jù)基礎(chǔ)正在增長(zhǎng)。

       自我管理是一個(gè)術(shù)語(yǔ)，用于描述患有長(zhǎng)期疾病的人為管理自己的疾病所做的事情。它包括“個(gè)人管理慢性病所固有的癥狀、治療、身體和心理社會(huì)后果以及生活方式改變的能力”（第 177 頁(yè)）。15自我管理最近被應(yīng)用于癌癥的背景下，此外還包括常規(guī)監(jiān)測(cè)和自我監(jiān)測(cè)疾病進(jìn)展的跡象，以降低復(fù)發(fā)的風(fēng)險(xiǎn)。成功的自我管理的好處包括減少涉及緊急入院的危機(jī)、提高生活質(zhì)量和更有信心管理癌癥對(duì)日常生活的影響，盡管具有挑戰(zhàn)性的后果和相關(guān)的破壞。

       雖然人們認(rèn)識(shí)到人們需要支持來(lái)管理對(duì)他們?nèi)粘Ｉ畹膹V泛影響，但在癌癥護(hù)理中提供的自我管理支持并不一致。7最近的全球行動(dòng)呼吁強(qiáng)調(diào)需要提高自我管理支持的質(zhì)量，以使人們能夠發(fā)展最佳自我管理所需的知識(shí)、信心和技能。7如果沒(méi)有足夠的自我管理支持，癌癥患者和幸存者可能難以管理癌癥和治療對(duì)他們?nèi)粘Ｉ畹挠绊?，從而?dǎo)致更差的健康和福祉以及更差的生存質(zhì)量。

       有證據(jù)表明，在正確的時(shí)間提供正確的自我管理支持使人們能夠在治療期間及以后管理癌癥的后果。8 12 13 Howell等人 18證明，在實(shí)施自我管理支持之前，需要考慮組織和臨床醫(yī)生的障礙和促成因素，以便為癌癥護(hù)理中的具體實(shí)施策略提供信息。Howell等人的18 項(xiàng)研究中的三個(gè)癌癥中心各自確定了實(shí)施的障礙和促成因素，以及對(duì)變革的準(zhǔn)備情況，這需要不同的方法來(lái)支持實(shí)施。豪厄爾等人 18根據(jù)他們?cè)谏婕敖Y(jié)直腸癌、肺癌和淋巴瘤患者的門(mén)診癌癥護(hù)理方面的經(jīng)驗(yàn)，強(qiáng)調(diào)在癌癥護(hù)理中實(shí)施自我管理支持之前需要承認(rèn)和計(jì)劃的關(guān)鍵考慮因素。首先，醫(yī)療保健專(zhuān)業(yè)人員和他們工作的組織需要支持，才能從家長(zhǎng)式文化轉(zhuǎn)變?yōu)樽尰颊咦鳛樗麄兊淖o(hù)理合作伙伴的文化。其次，醫(yī)療保健專(zhuān)業(yè)人員和行政和管理人員需要了解自我管理支持是什么，它涉及什么，以及對(duì)癌癥患者和癌癥患者的益處。第三，認(rèn)識(shí)到醫(yī)療保健專(zhuān)業(yè)人員需要支持、工具和技能來(lái)加強(qiáng)他們的自我管理支持實(shí)踐。

       豪威爾等人的18研究的重點(diǎn)是在處理設(shè)定preimplementation相。我們還可以從英國(guó)的一項(xiàng)研究中學(xué)習(xí)，該研究評(píng)估了將支持性自我管理引入后續(xù)護(hù)理途徑的情況。所有患者都進(jìn)行常規(guī)隨訪預(yù)約和定期監(jiān)測(cè)的傳統(tǒng)隨訪護(hù)理方法不能充分滿(mǎn)足患者的需求，并且鑒于癌癥幸存者人數(shù)的增加是不可持續(xù)的。19 TrueNTH UK 支持的自我管理和隨訪護(hù)理途徑（TrueNTH UK 途徑）被引入 NHS 的部分內(nèi)容，用于接受原發(fā)性前列腺癌治療并適 合自我管理隨訪的男性。20TrueNTH UK 途徑包括一名 4 級(jí)支持人員，他是治療后男性聯(lián)系和支持的關(guān)鍵點(diǎn)；一個(gè) 4 小時(shí)的研討會(huì)，提供信息并支持男性發(fā)展自我管理技能和信心；僅當(dāng)檢測(cè)結(jié)果表明需要進(jìn)一步調(diào)查時(shí)，才可通過(guò)醫(yī)院預(yù)約進(jìn)行遠(yuǎn)程監(jiān)控；通過(guò)在線門(mén)戶(hù)訪問(wèn)測(cè)試結(jié)果；通過(guò)與支持人員聯(lián)系進(jìn)行的整體需求評(píng)估。這種新的護(hù)理模式已被證明比傳統(tǒng)的隨訪更有效、更具成本效益，并且為患者所接受。12它也適用于結(jié)直腸癌和乳腺癌患者。已經(jīng)制作了一個(gè)支持實(shí)施支持的自我管理后續(xù)行動(dòng)的工具包。20

       Howell等人的18研究結(jié)果和 TrueNTH UK 途徑與國(guó)際研究人員和醫(yī)療保健專(zhuān)業(yè)人員團(tuán)體（癌癥自我管理全球合作伙伴）最近的行動(dòng)呼吁相一致，該組織關(guān)于勞動(dòng)力發(fā)展和醫(yī)療保健提供者準(zhǔn)備成功的自我管理支持。7其中包括：

必要的文化轉(zhuǎn)變

       Howell等人 18強(qiáng)調(diào)醫(yī)療保健專(zhuān)業(yè)人員和他們工作的組織需要從家長(zhǎng)式文化轉(zhuǎn)變?yōu)榛颊吆歪t(yī)療保健專(zhuān)業(yè)人員一起工作的伙伴關(guān)系安排。這種伙伴關(guān)系將讓患者參與他們的護(hù)理和康復(fù)，以確定對(duì)他們來(lái)說(shuō)重要的事情，而不是他們的問(wèn)題，并支持他們成為具備所需技能的有效和自信的自我管理者。

       為了實(shí)現(xiàn)這一目標(biāo)，Howell等人 18強(qiáng)調(diào)需要醫(yī)療保健專(zhuān)業(yè)人員以及醫(yī)療保健組織的管理者和管理者參與新的自我管理計(jì)劃的設(shè)計(jì)。這將有助于全面了解實(shí)施自我管理支持的顧慮、障礙和促成因素。隨后的實(shí)施策略將涉及對(duì)自我管理支持是什么、為什么重要的專(zhuān)業(yè)和組織理解，并試圖克服這種理解產(chǎn)生的障礙。

       實(shí)施 TrueNTH UK 途徑的早期障礙包括缺乏臨床醫(yī)生的支持；對(duì)患者安全的擔(dān)憂；擔(dān)心衛(wèi)生專(zhuān)業(yè)人員與治療后表現(xiàn)良好的患者接觸有限；擔(dān)心引入該途徑可能導(dǎo)致資金減少；對(duì)新途徑的組成部分缺乏了解；必須駕馭多個(gè)管理系統(tǒng)的挑戰(zhàn)；實(shí)施和集成信息技術(shù) (IT) 系統(tǒng)的挑戰(zhàn)。這些障礙在實(shí)施的早期階段就已經(jīng)確定，在克服這些挑戰(zhàn)的地方，成功引入了該途徑，患者可以接受并降低了成本。12豪厄爾等人的研究表明，這些障礙，無(wú)論是在醫(yī)療保健專(zhuān)業(yè)人員和組織變革準(zhǔn)備方面，都可以在早期階段確定，并制定戰(zhàn)略，以便在實(shí)施之前更順利地采用。

       支持實(shí)施 TrueNTH UK 途徑所需的文化轉(zhuǎn)變的推動(dòng)因素包括確定臨床線索以支持與包括專(zhuān)員、臨床治理和服務(wù)改進(jìn)線索在內(nèi)的廣泛利益相關(guān)者的早期接觸、支持將自我管理支持整合到數(shù)字系統(tǒng)中的 IT 以及行政支持，以克服多個(gè)行政系統(tǒng)帶來(lái)的復(fù)雜性。由醫(yī)療保健專(zhuān)業(yè)人員（例如，泌尿科醫(yī)生、腫瘤科醫(yī)生、臨床護(hù)士專(zhuān)家）領(lǐng)導(dǎo)的工作組負(fù)責(zé)實(shí)施 TrueNTH UK 途徑并就制定臨床指南和治理協(xié)議做出決定，支持實(shí)施和提供安全有效的后續(xù)治療起來(lái)照顧。該小組還支持團(tuán)隊(duì)最大限度地了解新途徑及其含義，

準(zhǔn)備勞動(dòng)力

       Howell等人 18強(qiáng)調(diào)，為了成功實(shí)施，對(duì)癌癥護(hù)理中的自我管理意味著什么、為什么它很重要以及良好的自我管理支持是什么樣的達(dá)成共識(shí)是必要的起點(diǎn)。醫(yī)療保健專(zhuān)業(yè)人員需要獲得支持，以獲取使患者能夠有效地自我管理所需的知識(shí)和技能，并同意核心課程來(lái)支持這一點(diǎn)。

       TrueNTH UK 還強(qiáng)調(diào)了廣泛的利益相關(guān)者參與的重要性，以在整個(gè)過(guò)程中確定不同利益相關(guān)者的關(guān)注和需求，以形成共識(shí)并確定當(dāng)?shù)匦枨蟛⒐膭?lì)支持。幫助推動(dòng)這一進(jìn)程的當(dāng)?shù)嘏R床冠軍有助于支持負(fù)責(zé)實(shí)施的臨床團(tuán)隊(duì)了解需要什么，并讓他們參與早期討論以制定途徑、指導(dǎo)和相關(guān)協(xié)議。

核心結(jié)果測(cè)量集

       Howell等人 18和 TrueNTH UK 都強(qiáng)調(diào)了數(shù)據(jù)的重要性，以證明支持自我管理的好處，例如減少緊急入院。為了確定自我管理支持是否有效，還需要就預(yù)期結(jié)果達(dá)成共識(shí)。還需要一套商定的核心患者報(bào)告結(jié)果措施。有證據(jù)表明，管理癌癥及其治療后果的自我效能感應(yīng)作為成功自我管理的一項(xiàng)指標(biāo)，因?yàn)樗纫子诟深A(yù)，又是健康和福祉結(jié)果的關(guān)鍵預(yù)測(cè)指標(biāo)。

擴(kuò)大范圍并獲得自我管理支持

       SMARTCare (Howell et al 18 ) 和 TrueNTH UK 途徑都被設(shè)計(jì)成常規(guī)護(hù)理的一部分。TrueNTH UK 途徑已被整合到常規(guī)護(hù)理中，因此不是可選的額外措施：所有符合條件的患者都被安排在該途徑上。支持患者了解自我管理支持是什么以及如何參與。相比之下，自選項(xiàng)目往往會(huì)吸引受過(guò)良好教育、自我管理良好的患者。22因此，那些實(shí)施自我管理支持的人需要考慮服務(wù)人群中需求的多樣性，以便那些最需要的人成為關(guān)注的焦點(diǎn)。需要在代表性不足的人的參與下評(píng)估所服務(wù)人群的需求。發(fā)現(xiàn)需求的有意義的患者參與應(yīng)該有助于自我管理支持的發(fā)展。自我管理支持需要以多種形式出現(xiàn)，包括研討會(huì)、數(shù)字支持和一對(duì)一的臨床對(duì)話，這些形式具有文化敏感性，并包含健康素養(yǎng)較低的人。

結(jié)論

       為了使自我管理支持取得成功，我們需要預(yù)測(cè)、發(fā)現(xiàn)和克服組織和醫(yī)療保健專(zhuān)業(yè)實(shí)施的障礙，清楚地了解好的情況，就如何證明成功的自我管理支持和收集證據(jù)達(dá)成一致好的做法，以便可以共享、復(fù)制和酌情調(diào)整。需要全球組織的擁護(hù)者帶頭提供高質(zhì)量和一致的自我管理支持，以改善癌癥患者和癌癥患者的生活。

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