Improving patients’ experience of their treatment and care is an important issue for the GLCC and its members. There is, however, little data comparing patient experience between countries.
In 2020 we therefore set out to gain insights into patient experience, working with our network of patient advocacy groups to share a multi-national online survey asking lung cancer patients around the world about their experience of treatment and care.
This uncovered a wealth of information and insight and was presented at the World Congress on Lung Cancer. However, shortly after the data was gathered, the CVID-19 pandemic struck, changing the landscape completely for patients and clinicians. That being so, there was an urgent need to better understand just how the patient experience had been impacted by the pandemic.
For this 2021 Patient Experience survey, 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 2020 survey, and we have compared 2020 and 2021 results whenever applicable. Sections 4, 5, and 6 are new so only include 2021 data.
The following National Reports on findings can be viewed and downloaded as read-only Word documents or read-only pdf.