Outdated or complex information prevails in 11 studied countries, potentially inhibiting patients’ ability to make informed decisions about their care
AstraZeneca today presented a systematic analysis of the online lung cancer information landscape at the European Lung Cancer Congress (ELCC) 2019 in Geneva, Switzerland. The research revealed that information on lung cancer can be difficult to access for patients and caregivers, is often outdated and sometimes inaccurate. While the quality and accessibility of information varied considerably between the 11 countries studied, including the US, Japan, Canada, and across Europe, gaps in information were identified across all regions.1
The analysis of 885 websites shows that although sources of information differed between countries, globally news sources were the leading type of website (42%). The impact of news media content requires careful consideration if patients are to have balanced information. The research also shows that information on treatment options, when available, was often either too complex or too high-level and incomplete. Chemotherapy was the most frequently mentioned treatment option, included in 58% of sources, followed by radiation therapy (44%), surgery (40%), Immuno-Oncology (IO) therapies (38%) and targeted therapies (33%)
Anne-Marie Baird, PhD, Lung Cancer Europe said: “More and more people impacted by lung cancer use the internet as their primary source of information. However, this information is not necessarily accurate or accessible, and can lack context for most patients. There is a need for community stakeholders to work together to ensure clear, curated and easily understandable information is readily available for patients in their own languages.”
Paul Naish, Director, Oncology Advocacy & Government Affairs at AstraZeneca, said: “These findings confirm anecdotal evidence suggesting a considerable patient information gap. As scientific understanding in cancer continues to advance, it is critical that patients looking to learn more about their disease and potential treatment options can find the information they need.”
The research showed that high quality information is available, but action may be needed to help patients find it in the wider information landscape. Search engine optimisation of content from patient group/professional organisation/healthcare provider organisation websites was good for general search terms (e.g. “information on lung cancer” or “different types of lung cancer”). However, when the search terms were more specific, for example “biomarker testing” or “chemoradiotherapy” (added to “lung cancer”) these websites appeared much less frequently.
Further analysis also showed:
· 65% of sources provided information on differences between non-small cell and small cell lung cancer and but only 29% explained the staging of disease
· Point mutations, such as those in the epidermal growth factor receptor (EGFR) or anaplastic lymphoma kinase (ALK) genes were highlighted in only 35% of information sources, with 19% noting the availability of testing for these
· 23% of information sources mentioned IO biomarkers (including programmed cell death-1 [PD-1] or programmed death-ligand 1 [PD-L1]) and 11% cited potential testing options to identify patients eligible for these
1. Naish P, Purdy E. Information for Lung Cancer Patients and Their Caregivers: A Systematic Analysis of the Online Landscape. Abstract 202P. Presented at the European Lung Cancer Congress (ELCC 2019), 10-13 April 2019, Geneva, Switzerland.