Dataset Information

"The whole of humanity has lungs, doesn't it? We are not all the same sort of people": patient preferences and choices for an online, self-guided chronic breathlessness supportive intervention: SELF-BREATHE.

ABSTRACT:

Introduction

The burden of chronic breathlessness on individuals, family, society and health systems is significant and set to increase exponentially with an ageing population with complex multimorbidity, yet there is a lack of services. This has been further amplified by the coronavirus disease 2019 pandemic. Online breathlessness interventions have been proposed to fill this gap, but need development and evaluation based on patient preferences and choices. This study aimed to explore the preferences and choices of patients regarding the content of an online self-guided chronic breathlessness supportive intervention (SELF-BREATHE).

Methods

Semi-structured telephone interviews were conducted with adults living with advanced malignant and nonmalignant disease and chronic breathlessness (July to November 2020). Interviews were analysed using conventional and summative content analysis.

Results

25 patients with advanced disease and chronic breathlessness (COPD n=13, lung cancer n=8, interstitial lung disease n=3, bronchiectasis n=1; 17 male; median (range) age 70 (47-86) years; median (range) Medical Research Council dyspnoea score 3 (2-5)) were interviewed. Individuals highlighted strong preferences for focused education, methods to increase self-motivation and engagement, interventions targeting breathing and physical function, software capability to personalise the content of SELF-BREATHE to make it more meaningful to the user, and aesthetically designed content using various communication methods including written, video and audio content. Furthermore, they identified the need to address motivation as a key potential determinant of the success of SELF-BREATHE.

Conclusion

Our findings provide an essential foundation for future digital intervention development (SELF-BREATHE) and scaled research.

SUBMITTER: Reilly CC

PROVIDER: S-EPMC9271754 | biostudies-literature | 2022 Jul

REPOSITORIES: biostudies-literature

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Publications

"The whole of humanity has lungs, doesn't it? We are not all the same sort of people": patient preferences and choices for an online, self-guided chronic breathlessness supportive intervention: SELF-BREATHE.

Reilly Charles C CC Bristowe Katherine K Roach Anna A Chalder Trudie T Maddocks Matthew M Higginson Irene J IJ

ERJ open research 20220711 3

<h4>Introduction</h4>The burden of chronic breathlessness on individuals, family, society and health systems is significant and set to increase exponentially with an ageing population with complex multimorbidity, yet there is a lack of services. This has been further amplified by the coronavirus disease 2019 pandemic. Online breathlessness interventions have been proposed to fill this gap, but need development and evaluation based on patient preferences and choices. This study aimed to explore t ...[more]

PMID: 35821758

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Project description:IntroductionSELF-BREATHE is a complex, transdiagnostic, supportive, digital breathlessness intervention co-developed with patients. SELF-BREATHE seeks to build capacity and resilience within health services by improving the lives of people with chronic breathlessness using nonpharmacological, self-management approaches. This study aimed to determine whether SELF-BREATHE is feasible to deliver and acceptable to patients living with chronic breathlessness.MethodsA parallel, two-arm, single-blind, single-centre, randomised controlled, mixed-methods feasibility trial with participants allocated to 1) intervention group (SELF-BREATHE) or 2) control group (usual National Health Service (NHS) care). The setting was a large multisite NHS foundation trust in south-east London, UK. The participants were patients living with chronic breathlessness due to advanced malignant or nonmalignant disease(s). Participants were randomly allocated (1:1) to an online, self-guided, breathlessness supportive intervention (SELF-BREATHE) and usual care or usual care alone, over 6 weeks. The a priori progression criteria were ≥30% of eligible patients given an information sheet consented to participate; ≥60% of participants logged on and accessed SELF-BREATHE within 2 weeks; and ≥70% of patients reported the methodology and intervention as acceptable.ResultsBetween January 2021 and January 2022, 52 (47%) out of 110 eligible patients consented and were randomised. Of those randomised to SELF-BREATHE, 19 (73%) out of 26 logged on and used SELF-BREATHE for a mean±sd (range) 9±8 (1-33) times over 6 weeks. 36 (70%) of the 52 randomised participants completed and returned the end-of-study postal questionnaires. SELF-BREATHE users reported it to be acceptable. Post-intervention qualitative interviews demonstrated that SELF-BREATHE was acceptable and valued by users, improving breathlessness during daily life and at points of breathlessness crisis.ConclusionThese data support the feasibility of moving to a fully powered, randomised controlled efficacy trial with minor modifications to minimise missing data (i.e. multiple methods of data collection: face-to-face, telephone, video assessment and by post).

Project description:Breathlessness is highly prevalent in low and middle-income countries (LMICs). Low-cost, non-drug, breathlessness self-management interventions are effective in high-income countries. However, health beliefs influence acceptability and have not been explored in LMIC settings. Review with stakeholder engagement to co-develop explanatory programme theories for whom, if, and how breathlessness self-management might work in community settings in India. Iterative and systematic searches identified peer-reviewed articles, policy and media, and expert-identified sources. Data were extracted in terms of contribution to theory (high, medium, low), and theories developed with stakeholder groups (doctors, nurses and allied professionals, people with lived experiences, lay health workers) and an International Steering Group (RAMESES guidelines (PROSPERO42022375768)). One hundred and four data sources and 11 stakeholder workshops produced 8 initial programme theories and 3 consolidated programme theories. (1) Context: breathlessness is common due to illness, environment, and lifestyle. Cultural beliefs shape misunderstandings about breathlessness; hereditary, part of aging, linked to asthma. It is stigmatised and poorly understood as a treatable issue. People often use rest, incense, or tea, while avoiding physical activity due to fear of worsening breathlessness. Trusted voices, such as healthcare workers and community members, can help address misconceptions with clear, simple messages. (2) Breathlessness intervention applicability: nonpharmacological interventions can work across different contexts when they address unhelpful beliefs and behaviours. Introducing concepts like "too much rest leads to deconditioning" aligns with cultural norms while promoting beneficial behavioural changes, such as gradual physical activity. Acknowledging breathlessness as a medical issue is key to improving patient and family well-being. (3) Implementation: community-based healthcare workers are trusted but need simple, low-cost resources/skills integrated into existing training. Education should focus on managing acute episodes and daily breathlessness, reducing fear, and encouraging behavioural change. Evidence-based tools are vital to gain support from policymakers and expand implementation. Breathlessness management in India must integrate symptom management alongside public health and disease treatment strategies. Self-management interventions can be implemented in an LMIC setting. However, our novel methods indicate that understanding the context for implementation is essential so that unhelpful health beliefs can be addressed at the point of intervention delivery.

Dataset Information

"The whole of humanity has lungs, doesn't it? We are not all the same sort of people": patient preferences and choices for an online, self-guided chronic breathlessness supportive intervention: SELF-BREATHE.

Introduction

Methods

Results

Conclusion

Publications

"The whole of humanity has lungs, doesn't it? We are not all the same sort of people": patient preferences and choices for an online, self-guided chronic breathlessness supportive intervention: SELF-BREATHE.

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