In 2020 the GLCC and its network of patient advocacy groups ran a global online survey, asking lung cancer patients around the world about their experience of their treatment and care. This survey uncovered a wealth of information and insight and was presented at the World Congress on Lung Cancer.
For that survey, a global report, and national reports for each participating country, are available here.
Soon after the 2020 survey closed, the COVID-19 pandemic hit.
The pandemic had – and continues to have – a profound impact on healthcare systems around the world. Systems, services and teams had to change drastically to sustain levels of support for patients.
Many of the healthcare professionals who would use their respiratory expertise to support lung cancer patients were deployed to care for patients with COVID. Our member organisations had to change too, supporting lung cancer patients with questions around their risk of COVID, how they could protect themselves, and how their access to treatment might change with the pressures on services.
In this context, we wanted to understand how the care that people have received for their lung cancer has been affected by the crisis; therefore, we ran a fresh survey, with data collected during the early months of 2021.
The 2021 Global Patient Experience Survey
We repeated questions that we asked before so we could look for emerging trends. But we also added new questions about people’s contact with their treatment team during the pandemic, how living with lung cancer has affected their physical and mental health, and how they would like to receive information and support.
We have compared findings from the two surveys wherever applicable. We have also included lessons we have learned from running the survey and suggestions for areas that could be explored in future studies.
We are grateful to every patient and carer who took the time to respond to the surveys and tell us about their experience. We hope the findings will be useful to policymakers as they plan how lung cancer services can be supported to recover from the pandemic, as well as campaigners in their advocacy efforts to keep lung cancer patients’ needs front of mind.
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The GLCC established a multi-national steering group including patients, healthcare professionals and advocates to develop the survey questions. The survey was translated so that people could complete it in their native language. It was distributed by members’ networks and promoted through social media.
The survey was sent out in 20 different countries: Argentina, Australia, Brazil, Bulgaria, Canada, Denmark, Greece, Iceland, Ireland, Israel, Italy, Mexico, the Netherlands, Portugal, South Africa, Spain, Sweden, Taiwan, the UK, and the USA. In total, 1,291 lung cancer patients or their carers completed the survey between February and April 2021.
The questions for the survey were split into the following themes:
- Demographics and diagnosis – used for identifying patient populations by gender, age at diagnosis, type of lung cancer, and time since diagnosis
- Interventions – to understand what testing and treatments people have had since their diagnosis
- Experiences – to assess how involved people feel in decision-making about their care, whether they felt treated with dignity and respect, and how they describe themselves in the light of their experience (for example as a patient or a survivor)
- Emotional and physical impacts of lung cancer diagnosis – to determine how people have been affected emotionally and physically by their diagnosis, and who they seek support from when they need help
- Impact of COVID-19 – to assess experiences during the pandemic, in particular its impact on mental and physical wellbeing and how people interacted with their treatment team
- Seeking information – to find out how people living with lung cancer want to receive information
Sections 1, 2, and 3 listed above were included in the first survey, and, as stated earlier, we have compared 2020 and 2021 results whenever applicable. Sections 4, 5, and 6 are new so only include 2021 data.
National reports on findings will be included below as they become available. They can be viewed and downloaded as Word documents or pdf.