Development of the ‘ACT now & check-it-out’ intervention to support patient-initiated follow up for Head and Neck cancer patients

Lauren Matheson; Colin Greaves; Joan L Duda; Mary Wells; Denis Secher; Pat Rhodes; Ava Lorenc; Marcus Jepson; Gozde Ozakinci; Eila Watson; Tessa Fulton-Lieuw; Saloni Mittal; Barry Main; Paul Nankivell; Hisham Mehanna; Jo Brett

doi:10.1016/j.pec.2023.108033

Development of the ‘ACT now & check-it-out’ intervention to support patient-initiated follow up for Head and Neck cancer patients

Lauren Matheson^*, Colin Greaves, Joan L Duda, Mary Wells, Denis Secher, Pat Rhodes, Ava Lorenc, Marcus Jepson, Gozde Ozakinci, Eila Watson, Tessa Fulton-Lieuw, Saloni Mittal, Barry Main, Paul Nankivell, Hisham Mehanna, Jo Brett

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

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Abstract

Objective: Current Head and Neck cancer (HNC) follow-up models are considered sub-optimal at detecting recurrences. We describe the development of a patient-initiated follow up (PIFU) trial intervention support package, to support HNC patients to engage in PIFU self-care behaviors.

Methods: An intervention mapping approach, informed by evidence synthesis, theory and stakeholder consultation, guided intervention development. Data sources included a patient survey (n=144), patient interviews (n=30), 7 workshops with patients (n=25) and caregivers (n=3) and 5 workshops with health professionals (n=21).

Results: The intervention (‘ACT now & check-it-out’) comprises an education and support session with a health professional and an app and/or a booklet for patients. The main targets for change in patient self-care behaviors were: assessing what is normal for them; regularly checking for symptom changes; prompt help-seeking for persistent/new symptoms; self-management of fear of recurrence; engaging with the intervention over time.

Conclusions: We have developed an evidence, person and theory-based intervention to support PIFU self-care behaviors in HNC patients.

Practice Implications: A trial is underway to assess the effectiveness and cost-effectiveness of the intervention. If successful, this intervention could be adapted for patients with other cancers or diseases, which is important given the recent shift towards PIFU pathways.

Original language	English
Article number	108033
Number of pages	10
Journal	Patient Education and Counseling
Volume	119
Early online date	4 Nov 2023
DOIs	https://doi.org/10.1016/j.pec.2023.108033
Publication status	Published - Feb 2024

Bibliographical note

Funding:
This study/project is funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (NIHR200861). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. Professor Mehanna is a National Institute for Health Research (NIHR) Senior Investigator. The NIHR funding body was not involved in the study design; in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the article for publication.

For the purpose of open access, the author has applied [a Creative Commons Attribution (CC BY) licence] [an ‘Open Government Licence’] (or where permitted by the National Institute for Health Research) [a Creative Commons Attribution No-derivatives (CC BY-ND) licence] to any Author Accepted Manuscript version arising.

Keywords

head and neck cancer
intervention development
co-design
behavior change
patient-initiated follow-up
intervention mapping

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1016/j.pec.2023.108033Licence: Creative Commons: Attribution-NonCommercial-NoDerivs (CC BY-NC-ND)

MathesonL2023DevelopmentFinal published version, 3.53 MBLicence: Creative Commons: Attribution-NonCommercial-NoDerivs (CC BY-NC-ND)

PET-CT guided, symptom-based, patient-initiated surveillance versus clinical follow-up in advanced head and neck cancer
Nankivell, P., Gkoutos, G., Mehanna, H., Calvert, M., Gaunt, P., Moore, D., Greaves, C. & Duda, J.
NIHR CENTRAL COMMISSIONING FACILITY
30/11/20 → 29/11/26
Project: Other Government Departments

Cite this

Matheson, L., Greaves, C., Duda, J. L., Wells, M., Secher, D., Rhodes, P., Lorenc, A., Jepson, M., Ozakinci, G., Watson, E., Fulton-Lieuw, T., Mittal, S., Main, B., Nankivell, P., Mehanna, H., & Brett, J. (2024). Development of the ‘ACT now & check-it-out’ intervention to support patient-initiated follow up for Head and Neck cancer patients. Patient Education and Counseling, 119, Article 108033. https://doi.org/10.1016/j.pec.2023.108033

@article{548b6f7656594b66a71710d75b5c0d1e,

title = "Development of the {\textquoteleft}ACT now & check-it-out{\textquoteright} intervention to support patient-initiated follow up for Head and Neck cancer patients",

abstract = "Objective: Current Head and Neck cancer (HNC) follow-up models are considered sub-optimal at detecting recurrences. We describe the development of a patient-initiated follow up (PIFU) trial intervention support package, to support HNC patients to engage in PIFU self-care behaviors. Methods: An intervention mapping approach, informed by evidence synthesis, theory and stakeholder consultation, guided intervention development. Data sources included a patient survey (n=144), patient interviews (n=30), 7 workshops with patients (n=25) and caregivers (n=3) and 5 workshops with health professionals (n=21). Results: The intervention ({\textquoteleft}ACT now & check-it-out{\textquoteright}) comprises an education and support session with a health professional and an app and/or a booklet for patients. The main targets for change in patient self-care behaviors were: assessing what is normal for them; regularly checking for symptom changes; prompt help-seeking for persistent/new symptoms; self-management of fear of recurrence; engaging with the intervention over time. Conclusions: We have developed an evidence, person and theory-based intervention to support PIFU self-care behaviors in HNC patients. Practice Implications: A trial is underway to assess the effectiveness and cost-effectiveness of the intervention. If successful, this intervention could be adapted for patients with other cancers or diseases, which is important given the recent shift towards PIFU pathways.",

keywords = "head and neck cancer, intervention development, co-design, behavior change, patient-initiated follow-up, intervention mapping",

author = "Lauren Matheson and Colin Greaves and Duda, {Joan L} and Mary Wells and Denis Secher and Pat Rhodes and Ava Lorenc and Marcus Jepson and Gozde Ozakinci and Eila Watson and Tessa Fulton-Lieuw and Saloni Mittal and Barry Main and Paul Nankivell and Hisham Mehanna and Jo Brett",

note = "Funding: This study/project is funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (NIHR200861). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. Professor Mehanna is a National Institute for Health Research (NIHR) Senior Investigator. The NIHR funding body was not involved in the study design; in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the article for publication. For the purpose of open access, the author has applied [a Creative Commons Attribution (CC BY) licence] [an {\textquoteleft}Open Government Licence{\textquoteright}] (or where permitted by the National Institute for Health Research) [a Creative Commons Attribution No-derivatives (CC BY-ND) licence] to any Author Accepted Manuscript version arising.",

year = "2024",

month = feb,

doi = "10.1016/j.pec.2023.108033",

language = "English",

volume = "119",

journal = "Patient Education and Counseling",

issn = "0738-3991",

publisher = "Elsevier",

}

Matheson, L, Greaves, C , Duda, JL, Wells, M, Secher, D, Rhodes, P, Lorenc, A, Jepson, M, Ozakinci, G, Watson, E, Fulton-Lieuw, T, Mittal, S, Main, B, Nankivell, P , Mehanna, H & Brett, J 2024, 'Development of the ‘ACT now & check-it-out’ intervention to support patient-initiated follow up for Head and Neck cancer patients', Patient Education and Counseling, vol. 119, 108033. https://doi.org/10.1016/j.pec.2023.108033

TY - JOUR

T1 - Development of the ‘ACT now & check-it-out’ intervention to support patient-initiated follow up for Head and Neck cancer patients

AU - Matheson, Lauren

AU - Greaves, Colin

AU - Duda, Joan L

AU - Wells, Mary

AU - Secher, Denis

AU - Rhodes, Pat

AU - Lorenc, Ava

AU - Jepson, Marcus

AU - Ozakinci, Gozde

AU - Watson, Eila

AU - Fulton-Lieuw, Tessa

AU - Mittal, Saloni

AU - Main, Barry

AU - Nankivell, Paul

AU - Mehanna, Hisham

AU - Brett, Jo

N1 - Funding: This study/project is funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (NIHR200861). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. Professor Mehanna is a National Institute for Health Research (NIHR) Senior Investigator. The NIHR funding body was not involved in the study design; in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the article for publication. For the purpose of open access, the author has applied [a Creative Commons Attribution (CC BY) licence] [an ‘Open Government Licence’] (or where permitted by the National Institute for Health Research) [a Creative Commons Attribution No-derivatives (CC BY-ND) licence] to any Author Accepted Manuscript version arising.

PY - 2024/2

Y1 - 2024/2

N2 - Objective: Current Head and Neck cancer (HNC) follow-up models are considered sub-optimal at detecting recurrences. We describe the development of a patient-initiated follow up (PIFU) trial intervention support package, to support HNC patients to engage in PIFU self-care behaviors. Methods: An intervention mapping approach, informed by evidence synthesis, theory and stakeholder consultation, guided intervention development. Data sources included a patient survey (n=144), patient interviews (n=30), 7 workshops with patients (n=25) and caregivers (n=3) and 5 workshops with health professionals (n=21). Results: The intervention (‘ACT now & check-it-out’) comprises an education and support session with a health professional and an app and/or a booklet for patients. The main targets for change in patient self-care behaviors were: assessing what is normal for them; regularly checking for symptom changes; prompt help-seeking for persistent/new symptoms; self-management of fear of recurrence; engaging with the intervention over time. Conclusions: We have developed an evidence, person and theory-based intervention to support PIFU self-care behaviors in HNC patients. Practice Implications: A trial is underway to assess the effectiveness and cost-effectiveness of the intervention. If successful, this intervention could be adapted for patients with other cancers or diseases, which is important given the recent shift towards PIFU pathways.

AB - Objective: Current Head and Neck cancer (HNC) follow-up models are considered sub-optimal at detecting recurrences. We describe the development of a patient-initiated follow up (PIFU) trial intervention support package, to support HNC patients to engage in PIFU self-care behaviors. Methods: An intervention mapping approach, informed by evidence synthesis, theory and stakeholder consultation, guided intervention development. Data sources included a patient survey (n=144), patient interviews (n=30), 7 workshops with patients (n=25) and caregivers (n=3) and 5 workshops with health professionals (n=21). Results: The intervention (‘ACT now & check-it-out’) comprises an education and support session with a health professional and an app and/or a booklet for patients. The main targets for change in patient self-care behaviors were: assessing what is normal for them; regularly checking for symptom changes; prompt help-seeking for persistent/new symptoms; self-management of fear of recurrence; engaging with the intervention over time. Conclusions: We have developed an evidence, person and theory-based intervention to support PIFU self-care behaviors in HNC patients. Practice Implications: A trial is underway to assess the effectiveness and cost-effectiveness of the intervention. If successful, this intervention could be adapted for patients with other cancers or diseases, which is important given the recent shift towards PIFU pathways.

KW - head and neck cancer

KW - intervention development

KW - co-design

KW - behavior change

KW - patient-initiated follow-up

KW - intervention mapping

U2 - 10.1016/j.pec.2023.108033

DO - 10.1016/j.pec.2023.108033

M3 - Article

SN - 0738-3991

VL - 119

JO - Patient Education and Counseling

JF - Patient Education and Counseling

M1 - 108033

ER -

Development of the ‘ACT now & check-it-out’ intervention to support patient-initiated follow up for Head and Neck cancer patients

Abstract

Bibliographical note

Keywords

UN SDGs

Access to Document

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Projects

PET-CT guided, symptom-based, patient-initiated surveillance versus clinical follow-up in advanced head and neck cancer

Cite this