Abstract
Chronic breathlessness is a common, burdensome and distressing symptom in many advanced chronic illnesses. Self-management strategies are essential to optimise treatment, daily functioning and emotional coping. People with chronic illness commonly search the internet for advice on self-management. A review was undertaken in June 2015 to describe the content and quality of online advice on breathlessness self-management, to highlight under-served areas and to identify any unsafe content. Google was searched from Sydney, Australia, using the five most common search terms for breathlessness identified by Google Trends. We also hand-searched the websites of national associations. Websites were included if they were freely available in English and provided practical advice on self-management. Website quality was assessed using the American Medical Association Benchmarks. Readability was assessed using the Flesch–Kincaid grades, with grade 8 considered the maximum acceptable for enabling access. Ninety-one web pages from 44 websites met the inclusion criteria, including 14 national association websites not returned by Google searches. Most websites were generated in the USA (n=28, 64%) and focused on breathing techniques (n=38, 86%) and chronic obstructive pulmonary disease (n=27, 61%). No websites were found to offer unsafe advice. Adherence to quality benchmarks ranged from 9% for disclosure to 77% for currency. Fifteen (54%) of 28 written websites required grade ⩾9 reading level. Future development should focus on advice and tools to support goal setting, problem solving and monitoring of breathlessness. National associations are encouraged to improve website visibility and comply with standards for quality and readability.
Highlights
Chronic breathlessness is a common, burdensome and distressing symptom in people with advanced chronic illness, including chronic obstructive pulmonary disease (COPD), heart failure, cancer and neurological diseases.[1]The experience of breathlessness is individual and multidimensional, involving ‘sensory-perceptual’, ‘affective’ and ‘impact’ components.[2]
When reviewed against the American Medical Association (AMA) Benchmarks,[18 24] (54%) web pages were found to give no information on authorship, 34 (77%) failed to attribute the advice they offered and 10 (23%) gave no dates of authorship of review
A consumer-developed YouTube video on using common dietary ingredients to manage breathlessness that lacked evidence for Breathlessness self-management websites identified by this review were most commonly generated in the USA and focused predominantly on COPD and breathing techniques
Summary
Chronic breathlessness is a common, burdensome and distressing symptom in people with advanced chronic illness, including chronic obstructive pulmonary disease (COPD), heart failure, cancer (especially lung) and neurological diseases.[1]The experience of breathlessness is individual and multidimensional, involving ‘sensory-perceptual’, ‘affective’ and ‘impact’ components.[2]. Management of chronic breathlessness focuses on optimising treatment for underlying pathologies, managing reversible causes, reducing the frequency and severity of crises and minimising adverse impacts on quality of life.[3] Self-management is essential for implementing pharmacological and non-pharmacological treatments and sustaining everyday functioning and emotional coping.[11] Self-management interventions have been defined as those ‘focused on increasing a patient’s knowledge and understanding of actions they can take to manage breathlessness, including education plus strategies to improve coping skills or reduce anxiety or depression, cognitive behavioural/behavioural or psycho-educational interventions; psychosocial interventions; problem-solving interventions with or without goal setting and action plans; stress management; symptom coaching and breathing techniques’[12] (pp 3–4)
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