Content and quality of websites supporting self-management of chronic breathlessness in advanced illness: a systematic review

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.

Assessing the Methods, Tools, and Statistical Approaches in Google Trends Research: Systematic Review

“…Many studies have employed Google Trends for visualizing the changes in online interest or discussing peaks and spikes [ 60 , 62 , 123 , 124 ]. Brigo and Trinka [ 40 ] and Brigo et al [ 39 ] have studied the search volumes for related terms, Chaves et al [ 109 ] and Luckett et al [ 128 ] have explored terms related to the studied topic, and Davis et al [ 110 ] have examined related internet searches. Other approaches include the reporting of the polynomial trend lines [ 46 ] and investigation of statistically significant differences in yearly increases [ 119 ].…”

Exploring the Experience of Breathlessness with the Common-Sense Model of Self-Regulation (CSM)

“…This is understandable as (a) healthcare encounters with doctors are oriented around a diagnosis [ 50 , 51 ], and (b) health information resources for people living with breathlessness are often associated with a specific diagnosis. For example, a systematic review of websites providing self-management advice for people with chronic breathlessness identified 91 webpages from 44 websites with 61% ( n = 21) of these websites specifically targeted at people with COPD [ 52 ]. Such overlapping information sources may establish and reinforce cognitive representations (beliefs) about “cause”, “prognosis”, and “timeline” of breathlessness that are anchored in physiological, environmental, or past actions, and outside of their control ( Table 3 , Table 4 and Table 5 ).…”

The most cited articles on the topic of health behaviors in Google Trends research: a systematic review

“…Many studies have employed Google Trends for visualizing the changes of interest or discussing peaks and spikes, [44][45][46][47] such as the search volumes for related terms, terms related to the studied topic, [48,49] and the related internet searches. [50] Others include the reporting of the polynomial trend lines and the investigating of statistically significant differences in yearly increases.…”