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Oncology
Protocol
‘Re-engage’ pilot study protocol: a nurse-led eHealth intervention to re-engage, educate and empower childhood cancer survivors
  1. Christina Signorelli1,2,
  2. Claire E Wakefield1,2,
  3. Karen A Johnston1,2,
  4. Joanna E Fardell1,2,
  5. Mary-Ellen E Brierley1,2,
  6. Elysia Thornton-Benko3,4,
  7. Tali Foreman1,2,
  8. Kate Webber5,6,
  9. W Hamish Wallace7,
  10. Richard J Cohn1,2
  1. 1 Kids Cancer Centre, Sydney Children’s Hospital, Randwick, New South Wales, Australia
  2. 2 School of Women’s and Children’s Health, University of New South Wales, Sydney, New South Wales, Australia
  3. 3 Bondi Road Doctors, Sydney, New South Wales, Australia
  4. 4 Wellac Lifestyle: Wellness After, And during Cancer, Eastgardens, New South Wales, Australia
  5. 5 Department of Medical Oncology, Prince of Wales Hospital, Randwick, New South Wales, Australia
  6. 6 National Centre for Cancer Survivorship, University of New South Wales, Kensington, New South Wales, Australia
  7. 7 Department of Hematology/Oncology, Royal Hospital for Sick Children, Edinburgh, UK
  1. Correspondence to Christina Signorelli; c.signorelli{at}student.unsw.edu.au

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.

  • paediatric oncology
  • eHealth
  • long-term follow-up
  • survivorship
  • models of care

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjopen-2018-022269

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    Footnotes

    • Contributors CS, CEW and RJC were responsible for the initial conception of the study, study design and study protocol, and KAJ, JEF, M-EEB, ET-B, TF, KW and WHW also contributed to the design and protocol. CS, CEW, KAJ, JEF, M-EEB, ET-B and RJC led the initial design of participant documents, and TF, KW and WHW helped revise and refine these. All authors (CS, CEW, KAJ, JEF, M-EEB, ET-B, TF, KW, WHW, RJC) provided feedback on drafts of this manuscript and have read and approved the final manuscript.

    • Funding The Behavioural Sciences Unit (BSU) is proudly supported by the Kids with Cancer Foundation. CS is supported by The Kids’ Cancer Project and is a Barbara Hale Scholar of 2017. This pilot study received financial support from the AFGW Barbara Hale Fellowship, The Kids’ Cancer Project and a Cancer Council NSW Program Grant (PG16-02) with the support of the Estate of the Late Harry McPaul. The BSU’s survivorship research program is also funded by the Kids Cancer Alliance. JEF is supported by The Kids’ Cancer Project. CEW is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1143767).

    • Disclaimer None of the funding bodies were involved in the study design or writing of the manuscript, nor will they be involved in the analysis and interpretation of results collected in the pilot study.

    • Competing interests None declared.

    • Patient consent Not required.

    • Ethics approval This study has been approved by the South Eastern Sydney Local Health District Human Research Ethics Committee (reference number: 16/366).

    • Provenance and peer review Not commissioned; peer reviewed for ethical and funding approval prior to submission.