Using the behaviour change wheel and person-based approach to develop a digital self-management intervention for patients with adrenal insufficiency: the Support AI study protocol.

Sofia Llahana; Kathleen Mulligan; Shashivadan P Hirani; Stephanie Wilson; Stephanie E Baldeweg; Ashley Grossman; Christine Norton; Philippa Sharman; Pat McBride; Stanton Newman

doi:10.3389/fendo.2023.1207715

Using the behaviour change wheel and person-based approach to develop a digital self-management intervention for patients with adrenal insufficiency: the Support AI study protocol.

Sofia Llahana, Kathleen Mulligan, Shashivadan P Hirani, Stephanie Wilson, Stephanie E Baldeweg, Ashley Grossman, Christine Norton, Philippa Sharman, Pat McBride, Stanton Newman

Care in Long Term Conditions

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Abstract

INTRODUCTION: Most patients with Adrenal insufficiency (AI) require lifelong glucocorticoid replacement. They need to increase glucocorticoids during physical illness or major stressful situations and require parenteral hydrocortisone in the event of an adrenal crisis. Patients with AI have impaired quality of life and high mortality; approximately 1 in 6-12 patients are hospitalised at least once/year from a potentially preventable adrenal crisis. Adoption of self-management behaviours are crucial; these include adherence to medication, following "sick day rules" and associated behaviours that aid prevention and treatment of adrenal crisis such as symptom monitoring, having extra tablets, carrying a medical-alert ID and injection kit, and self-injecting when necessary. Current patient education is ineffective at supporting self-management behaviour change or reducing adrenal crisis-related hospitalisations. This research study aims to gain an in-depth understanding of the barriers and enablers to self-management for patients with AI and to develop an evidence-based digital self-management behaviour change intervention.

METHODS: The study is conducted in accordance with the MRC Framework for developing complex interventions. Underpinned by the Behaviour Change Wheel (BCW), the Theoretical Domains Framework (TDF), and the Person-Based Approach, this research will be conducted in two phases: Phase 1 will involve a sequential qualitative/quantitative mixed-methods study involving focus group interviews followed by a cross-sectional survey with patients with AI recruited from patient advocacy groups and endocrine clinics in the UK. Phase 2 will develop the Support AI, a website-based digital behaviour change intervention (DBCI) informed by Phase 1 findings to support self-management for patients with AI. The most appropriate behaviour change techniques (BCTs) will be selected utilising a nominal group technique with an Expert Panel of 10-15 key stakeholders. The design of the Support AI website will be guided by the Person-Based Approach using an Agile iterative "think-aloud" technique with 12-15 participants over 3 usability testing iterations.

CONCLUSION: A theory- and evidence-based digital behaviour change intervention will be developed which will be tested in a feasibility randomised trial following completion of this study. The projected benefit includes cost-effective health care service (reduced hospitalisations and demand for specialist services) and improved health outcomes and quality of life for patients with AI.

Original language	English
Article number	1207715
Journal	Frontiers in Endocrinology
Volume	14
Early online date	30 Jun 2023
DOIs	https://doi.org/10.3389/fendo.2023.1207715
Publication status	Published - 30 Jun 2023

Keywords

Humans
Adrenal Insufficiency/therapy
Behavior Therapy/methods
Cross-Sectional Studies
Quality of Life
Self-Management

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Llahana, S., Mulligan, K., Hirani, S. P., Wilson, S., Baldeweg, S. E., Grossman, A., Norton, C., Sharman, P., McBride, P., & Newman, S. (2023). Using the behaviour change wheel and person-based approach to develop a digital self-management intervention for patients with adrenal insufficiency: the Support AI study protocol. Frontiers in Endocrinology , 14, Article 1207715. https://doi.org/10.3389/fendo.2023.1207715

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title = "Using the behaviour change wheel and person-based approach to develop a digital self-management intervention for patients with adrenal insufficiency: the Support AI study protocol.",

abstract = "INTRODUCTION: Most patients with Adrenal insufficiency (AI) require lifelong glucocorticoid replacement. They need to increase glucocorticoids during physical illness or major stressful situations and require parenteral hydrocortisone in the event of an adrenal crisis. Patients with AI have impaired quality of life and high mortality; approximately 1 in 6-12 patients are hospitalised at least once/year from a potentially preventable adrenal crisis. Adoption of self-management behaviours are crucial; these include adherence to medication, following {"}sick day rules{"} and associated behaviours that aid prevention and treatment of adrenal crisis such as symptom monitoring, having extra tablets, carrying a medical-alert ID and injection kit, and self-injecting when necessary. Current patient education is ineffective at supporting self-management behaviour change or reducing adrenal crisis-related hospitalisations. This research study aims to gain an in-depth understanding of the barriers and enablers to self-management for patients with AI and to develop an evidence-based digital self-management behaviour change intervention.METHODS: The study is conducted in accordance with the MRC Framework for developing complex interventions. Underpinned by the Behaviour Change Wheel (BCW), the Theoretical Domains Framework (TDF), and the Person-Based Approach, this research will be conducted in two phases: Phase 1 will involve a sequential qualitative/quantitative mixed-methods study involving focus group interviews followed by a cross-sectional survey with patients with AI recruited from patient advocacy groups and endocrine clinics in the UK. Phase 2 will develop the Support AI, a website-based digital behaviour change intervention (DBCI) informed by Phase 1 findings to support self-management for patients with AI. The most appropriate behaviour change techniques (BCTs) will be selected utilising a nominal group technique with an Expert Panel of 10-15 key stakeholders. The design of the Support AI website will be guided by the Person-Based Approach using an Agile iterative {"}think-aloud{"} technique with 12-15 participants over 3 usability testing iterations. CONCLUSION: A theory- and evidence-based digital behaviour change intervention will be developed which will be tested in a feasibility randomised trial following completion of this study. The projected benefit includes cost-effective health care service (reduced hospitalisations and demand for specialist services) and improved health outcomes and quality of life for patients with AI.",

keywords = "Humans, Adrenal Insufficiency/therapy, Behavior Therapy/methods, Cross-Sectional Studies, Quality of Life, Self-Management",

author = "Sofia Llahana and Kathleen Mulligan and Hirani, {Shashivadan P} and Stephanie Wilson and Baldeweg, {Stephanie E} and Ashley Grossman and Christine Norton and Philippa Sharman and Pat McBride and Stanton Newman",

note = "Funding Information: This project is funded by the National Institute for Health and Care Research (NIHR) under its HEE/NIHR ICA Clinical Lecturer Personal Development Award scheme [Grant Reference Number NIHR301286 to Sofia Llahana]. Acknowledgments Funding Information: The authors would like to thank the National Institute for Health and Care Research (NIHR) for funding this project, the Addison{\textquoteright}s Disease Self Help Group and the Pituitary Foundation as collaborators in this study, the members of the Patient Advisory Group and all future research participants who will be contributing to this study. Publisher Copyright: Copyright {\textcopyright} 2023 Llahana, Mulligan, Hirani, Wilson, Baldeweg, Grossman, Norton, Sharman, McBride and Newman.",

year = "2023",

month = jun,

day = "30",

doi = "10.3389/fendo.2023.1207715",

language = "English",

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Llahana, S, Mulligan, K, Hirani, SP, Wilson, S, Baldeweg, SE, Grossman, A, Norton, C, Sharman, P, McBride, P & Newman, S 2023, 'Using the behaviour change wheel and person-based approach to develop a digital self-management intervention for patients with adrenal insufficiency: the Support AI study protocol.', Frontiers in Endocrinology , vol. 14, 1207715. https://doi.org/10.3389/fendo.2023.1207715

Using the behaviour change wheel and person-based approach to develop a digital self-management intervention for patients with adrenal insufficiency: the Support AI study protocol. / Llahana, Sofia; Mulligan, Kathleen; Hirani, Shashivadan P et al.
In: Frontiers in Endocrinology , Vol. 14, 1207715, 30.06.2023.

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

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T1 - Using the behaviour change wheel and person-based approach to develop a digital self-management intervention for patients with adrenal insufficiency

T2 - the Support AI study protocol.

AU - Llahana, Sofia

AU - Mulligan, Kathleen

AU - Hirani, Shashivadan P

AU - Wilson, Stephanie

AU - Baldeweg, Stephanie E

AU - Grossman, Ashley

AU - Norton, Christine

AU - Sharman, Philippa

AU - McBride, Pat

AU - Newman, Stanton

N1 - Funding Information: This project is funded by the National Institute for Health and Care Research (NIHR) under its HEE/NIHR ICA Clinical Lecturer Personal Development Award scheme [Grant Reference Number NIHR301286 to Sofia Llahana]. Acknowledgments Funding Information: The authors would like to thank the National Institute for Health and Care Research (NIHR) for funding this project, the Addison’s Disease Self Help Group and the Pituitary Foundation as collaborators in this study, the members of the Patient Advisory Group and all future research participants who will be contributing to this study. Publisher Copyright: Copyright © 2023 Llahana, Mulligan, Hirani, Wilson, Baldeweg, Grossman, Norton, Sharman, McBride and Newman.

PY - 2023/6/30

Y1 - 2023/6/30

N2 - INTRODUCTION: Most patients with Adrenal insufficiency (AI) require lifelong glucocorticoid replacement. They need to increase glucocorticoids during physical illness or major stressful situations and require parenteral hydrocortisone in the event of an adrenal crisis. Patients with AI have impaired quality of life and high mortality; approximately 1 in 6-12 patients are hospitalised at least once/year from a potentially preventable adrenal crisis. Adoption of self-management behaviours are crucial; these include adherence to medication, following "sick day rules" and associated behaviours that aid prevention and treatment of adrenal crisis such as symptom monitoring, having extra tablets, carrying a medical-alert ID and injection kit, and self-injecting when necessary. Current patient education is ineffective at supporting self-management behaviour change or reducing adrenal crisis-related hospitalisations. This research study aims to gain an in-depth understanding of the barriers and enablers to self-management for patients with AI and to develop an evidence-based digital self-management behaviour change intervention.METHODS: The study is conducted in accordance with the MRC Framework for developing complex interventions. Underpinned by the Behaviour Change Wheel (BCW), the Theoretical Domains Framework (TDF), and the Person-Based Approach, this research will be conducted in two phases: Phase 1 will involve a sequential qualitative/quantitative mixed-methods study involving focus group interviews followed by a cross-sectional survey with patients with AI recruited from patient advocacy groups and endocrine clinics in the UK. Phase 2 will develop the Support AI, a website-based digital behaviour change intervention (DBCI) informed by Phase 1 findings to support self-management for patients with AI. The most appropriate behaviour change techniques (BCTs) will be selected utilising a nominal group technique with an Expert Panel of 10-15 key stakeholders. The design of the Support AI website will be guided by the Person-Based Approach using an Agile iterative "think-aloud" technique with 12-15 participants over 3 usability testing iterations. CONCLUSION: A theory- and evidence-based digital behaviour change intervention will be developed which will be tested in a feasibility randomised trial following completion of this study. The projected benefit includes cost-effective health care service (reduced hospitalisations and demand for specialist services) and improved health outcomes and quality of life for patients with AI.

AB - INTRODUCTION: Most patients with Adrenal insufficiency (AI) require lifelong glucocorticoid replacement. They need to increase glucocorticoids during physical illness or major stressful situations and require parenteral hydrocortisone in the event of an adrenal crisis. Patients with AI have impaired quality of life and high mortality; approximately 1 in 6-12 patients are hospitalised at least once/year from a potentially preventable adrenal crisis. Adoption of self-management behaviours are crucial; these include adherence to medication, following "sick day rules" and associated behaviours that aid prevention and treatment of adrenal crisis such as symptom monitoring, having extra tablets, carrying a medical-alert ID and injection kit, and self-injecting when necessary. Current patient education is ineffective at supporting self-management behaviour change or reducing adrenal crisis-related hospitalisations. This research study aims to gain an in-depth understanding of the barriers and enablers to self-management for patients with AI and to develop an evidence-based digital self-management behaviour change intervention.METHODS: The study is conducted in accordance with the MRC Framework for developing complex interventions. Underpinned by the Behaviour Change Wheel (BCW), the Theoretical Domains Framework (TDF), and the Person-Based Approach, this research will be conducted in two phases: Phase 1 will involve a sequential qualitative/quantitative mixed-methods study involving focus group interviews followed by a cross-sectional survey with patients with AI recruited from patient advocacy groups and endocrine clinics in the UK. Phase 2 will develop the Support AI, a website-based digital behaviour change intervention (DBCI) informed by Phase 1 findings to support self-management for patients with AI. The most appropriate behaviour change techniques (BCTs) will be selected utilising a nominal group technique with an Expert Panel of 10-15 key stakeholders. The design of the Support AI website will be guided by the Person-Based Approach using an Agile iterative "think-aloud" technique with 12-15 participants over 3 usability testing iterations. CONCLUSION: A theory- and evidence-based digital behaviour change intervention will be developed which will be tested in a feasibility randomised trial following completion of this study. The projected benefit includes cost-effective health care service (reduced hospitalisations and demand for specialist services) and improved health outcomes and quality of life for patients with AI.

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KW - Adrenal Insufficiency/therapy

KW - Behavior Therapy/methods

KW - Cross-Sectional Studies

KW - Quality of Life

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Using the behaviour change wheel and person-based approach to develop a digital self-management intervention for patients with adrenal insufficiency: the Support AI study protocol.

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