Speech and Language Therapy Department, The Royal Marsden NHS Foundation Trust, Chelsea, London, SW3 6JJ, UK.
The Point of Care Foundation, CAN Mezzanine, 7-14 Great Dover Street, London, SE1 4YR, UK.
Support Care Cancer. 2020 Feb;28(2):739-745. doi: 10.1007/s00520-019-04877-z. Epub 2019 May 28.
Recent studies have highlighted that people diagnosed with head and neck cancer (HNC) have complex information needs. They are subject to multiple clinical appointments with numerous healthcare professionals in preparation for their treatment. Speech and language therapists (SLTs) are core members of the HNC multidisciplinary team, providing assessment, prehabilitation and counselling regarding potential treatment effects on the critical functions, including swallowing and communication. We believed the purpose of the pre-treatment speech-language therapy (SLT) consultation within this pathway is not well understood by patients. Whilst the benefits of prophylactic swallowing exercise prescriptions continue to be explored, adherence is a frequently cited challenge in clinical trials. We sought to enhance pre-treatment dysphagia services for patients with head and neck cancer (HNC) undergoing chemoradiation.
A participatory action research approach called experience-based co-design (EBCD) was undertaken at a tertiary cancer hospital in the UK. People who had previous radical radiation treatment for head and neck cancer and staff members within the head and neck unit were recruited to take part in in-depth, one-to-one interviews about their experiences of the pre-treatment SLT head and neck radiation clinic. Patient interviews were video-recorded, analysed and edited down to a 30 min 'trigger' film. At a subsequent patient feedback event, the film was shown and an 'emotional mapping' exercise was undertaken. Through facilitated discussion, patient priorities for change were agreed and recorded. At a staff feedback event, key themes from the staff interviews were discussed and priority areas for change identified. The project culminated in a joint patient and staff event where the film was viewed, experiences shared and joint priorities for change agreed. Task and finish groups were developed to implement these changes.
Seven patients and seven staff members participated. All seven patients had undergone radical (chemo-) radiation for HNC. At least 2 months had elapsed since their final treatment date and all participants were within 9 months of their definitive treatment. Staff members comprised a radiation oncologist, two clinical nurse specialists, two head and neck dietitians and two speech-language therapists. Patients reported that overall, their experience of the pre-treatment clinic is positive. Patients value experienced staff, consistency of staff and the messages they provide and a team approach. Patients highlighted the need for different information methods including online/digital information resources and further information regarding the longer-term effects of treatment. Patients valued the purposes of prophylactic exercises and again advocated for supporting resources to be available in a range of online/digital media. Staff members raised the need for flexibility in appointment times and clearer messaging as to the rationale for a pre-treatment SLT appointment, including a rebranding of the SLT service. Seven key areas for improvement were identified jointly by patients and staff members including revision of patient and carer information, development of a patient experience video, information on timelines for recovery, a buddy system for patients before, during and after treatment, flexibility of appointment scheduling, seamless transfer of care between settings and SLT department rebranding. Joint patient and staff task and finish groups were initiated to work on these seven priority areas.
We have worked in partnership with patients to co-design pre-treatment dysphagia services which are accessible and meet the individuals' needs. Task and finish groups are ongoing with staff and patients are working together to address priority areas for change. This work provides a good example for other centres who may wish to engage in similar activities.
最近的研究强调，被诊断患有头颈部癌症（HNC）的患者有复杂的信息需求。他们需要多次与众多医疗保健专业人员预约，为治疗做准备。言语治疗师（SLT）是 HNC 多学科团队的核心成员，为潜在的治疗效果提供评估、预康复和咨询，包括吞咽和沟通。我们认为，患者对治疗前言语治疗（SLT）咨询的目的还没有很好的理解。虽然预防性吞咽运动处方的益处仍在不断探索中，但在临床试验中，坚持治疗是一个经常被提到的挑战。我们旨在增强接受放化疗的头颈部癌症（HNC）患者的治疗前吞咽障碍服务。
在英国的一家三级癌症医院，采用了一种名为基于经验的共同设计（EBCD）的参与式行动研究方法。曾接受过头颈部根治性放疗的患者和头颈部病房的工作人员被招募来参加深入的一对一访谈，了解他们在治疗前的 SLT 头颈部放疗诊所的经历。患者访谈进行了视频录制、分析和编辑，制作成时长 30 分钟的“触发”影片。在随后的患者反馈活动中，播放了这部影片，并进行了“情感映射”练习。通过有针对性的讨论，确定了患者希望做出改变的优先事项，并进行了记录。在工作人员的反馈活动中，讨论了工作人员访谈的主要主题，并确定了需要改变的优先领域。该项目最终在一个联合的患者和工作人员活动中达到高潮，观看了影片，分享了经验，并就共同的变革优先事项达成一致。成立了任务完成小组来实施这些变革。
有 7 名患者和 7 名工作人员参与了研究。所有 7 名患者都因 HNC 接受了根治性（化疗）放疗。至少有 2 个月过去了，他们的最后一次治疗日期，所有参与者都在他们的明确治疗后 9 个月内。工作人员包括放射肿瘤学家、2 名临床护士专家、2 名头颈部营养师和 2 名言语治疗师。患者报告说，总的来说，他们对治疗前诊所的体验是积极的。患者重视有经验的工作人员、工作人员的一致性以及他们提供的信息和团队方法。患者强调需要不同的信息方法，包括在线/数字信息资源，以及更多关于治疗长期影响的信息。患者重视预防性运动的目的，并再次倡导提供各种在线/数字媒体的支持资源。工作人员提出了调整预约时间的需求，并更明确地传达治疗前 SLT 预约的基本原理，包括对 SLT 服务进行重新命名。患者和工作人员共同确定了七个需要改进的重点领域，包括修订患者和护理人员信息、开发患者体验视频、恢复时间信息、在治疗前、治疗中和治疗后为患者提供伙伴制度、预约时间的灵活性、治疗环境之间的无缝护理转移以及 SLT 部门的重新命名。已经成立了由患者和工作人员组成的联合任务和完成小组来处理这七个优先事项。
我们与患者合作共同设计了治疗前吞咽障碍服务，这些服务是可访问的，满足了个人的需求。工作人员和患者都在开展工作，以解决变革的优先事项。这项工作为其他希望开展类似活动的中心提供了一个很好的范例。
