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“重新参与”试点研究方案:一项由护士主导的电子健康干预措施,旨在让儿童癌症幸存者重新参与、接受教育并获得赋能。

'Re-engage' pilot study protocol: a nurse-led eHealth intervention to re-engage, educate and empower childhood cancer survivors.

作者信息

Signorelli Christina, Wakefield Claire E, Johnston Karen A, Fardell Joanna E, Brierley Mary-Ellen E, Thornton-Benko Elysia, Foreman Tali, Webber Kate, Wallace W Hamish, Cohn Richard J

机构信息

Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.

School of Women's and Children's Health, University of New South Wales, Sydney, New South Wales, Australia.

出版信息

BMJ Open. 2018 Apr 12;8(4):e022269. doi: 10.1136/bmjopen-2018-022269.

Abstract

INTRODUCTION

Many childhood cancer survivors are disengaged from cancer-related follow-up care despite being at high risk of treatment-related late effects. Innovative models of long-term follow-up (LTFU) care to manage ongoing treatment-related complications are needed. 'Re-engage' is a nurse-led eHealth intervention designed to improve survivors' health-related self-efficacy, targeted at survivors disengaged from follow-up. Re-engage aims to overcome survivor- and parent-reported barriers to care and ensure survivors receive the care most appropriate to their risk level.

METHODS AND ANALYSIS

This study will recruit 30 Australian childhood cancer survivors who are not receiving any cancer-related care. Participation involves two online/telephone consultations with a survivorship nurse for medical assessment, a case review, risk stratification and creation of a care plan by a multidisciplinary team of specialists. We will assess the feasibility of implementing 'Re-engage' and its acceptability to participants and health professionals involved. The primary outcome will be survivors' health-related self-efficacy, measured at baseline and 1 and 6 months postintervention. Secondary outcomes will include the effect of 'Re-engage' on survivors' health behaviours and beliefs, engagement in healthcare, information needs and emotional well-being. We will also document the cost per patient to deliver 'Re-engage'. If Re-engage is acceptable, feasible and demonstrates early efficacy, it may have the potential to empower survivors in coordinating their complex care, improving survivors' long-term engagement and satisfaction with care. Ideally, it will be implemented into clinical practice to recall survivors lost to follow-up and reduce the ongoing burden of treatment for childhood cancer.

ETHICS AND DISSEMINATION

The study protocol has been approved by the South Eastern Sydney Local Health District Human Research Ethics Committee (reference number: 16/366). The results will be disseminated in peer-reviewed journals and at scientific conferences. A lay summary will be published on the Behavioural Sciences Unit website.

TRIAL REGISTRATION NUMBER

ACTRN12618000194268.

摘要

引言

许多儿童癌症幸存者尽管面临与治疗相关的晚期效应的高风险,但却不再参与癌症相关的后续护理。需要创新的长期随访(LTFU)护理模式来管理持续的治疗相关并发症。“重新参与”是一项由护士主导的电子健康干预措施,旨在提高幸存者与健康相关的自我效能感,目标是那些不再参与随访的幸存者。“重新参与”旨在克服幸存者及其父母报告的护理障碍,并确保幸存者获得与其风险水平最相适应的护理。

方法与分析

本研究将招募30名未接受任何癌症相关护理的澳大利亚儿童癌症幸存者。参与包括与一名幸存者护理护士进行两次在线/电话咨询,以进行医学评估、病例审查、风险分层以及由多学科专家团队制定护理计划。我们将评估实施“重新参与”的可行性及其对参与者和相关健康专业人员的可接受性。主要结局将是幸存者与健康相关的自我效能感,在基线以及干预后1个月和6个月进行测量。次要结局将包括“重新参与”对幸存者健康行为和信念、医疗保健参与度、信息需求以及情绪健康的影响。我们还将记录提供“重新参与”的每位患者的成本。如果“重新参与”是可接受的、可行的并且显示出早期疗效,它可能有潜力使幸存者能够协调其复杂的护理,提高幸存者的长期参与度和对护理的满意度。理想情况下,它将被应用于临床实践中,以召回失访的幸存者并减轻儿童癌症持续的治疗负担。

伦理与传播

该研究方案已获得悉尼东南部地方卫生区人类研究伦理委员会的批准(参考编号:16/366)。研究结果将在同行评审期刊和科学会议上发表。一份通俗易懂的总结将发布在行为科学部门的网站上。

试验注册号

ACTRN12618000194268。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3e2a/5898358/69befdaac443/bmjopen-2018-022269f01.jpg

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