What do patients with non-small cell lung cancer understand about next-generation sequencing?
To help answer this question for a medical team at a major pharmaceutical corporation, Inspire conducted 30-minute surveys and 60-minute virtual interviews with patients and caregivers affected by non-small cell lung cancer (NSCLC).
Project focus: Patient awareness of NSCLC mutations and treatments
The focus of the partnership was to gauge patient awareness and understanding of next-generation sequencing (NGS) as it applies to NSCLC treatments. Most of the survey and interview questions focused on patients’ understanding of their specific cancer mutation and how that information drives treatment decisions.
Inspire solution: Gauging patient awareness of NGS through surveys and interviews
Inspire partnered with the client to create survey and interview questions that would obtain information about:
- Types of biomarker mutations identified by NGS
- Number of patients who had NGS
- When NGS took place during the patient journey
- Wait times for NGS results, including how healthcare providers managed expectations during this time
- Impact of the test results on patients’ treatment decisions
- Extent of patient and caregiver interest and involvement in clinical trial research
- Types of resources patients or caregivers used to research clinical trials
- Impact of the COVID-19 pandemic on a patient’s cancer care
Benefit to the client: Understanding how patients use NGS information to guide decisions
Together with Inspire, the client was able to determine that:
Only 36% of the respondents knew they had undergone NGS even though almost all respondents could name their cancer mutation (an indication that all respondents had had NGS).
For about half of those who knew they had NGS, the testing took place before treatments started.
The average wait time for sequencing results was two to four weeks (however, some people waited six or more weeks). Some respondents experienced life-disrupting anxiety during the wait period.
Most people believed their mutation information determined their treatment.
Half of the respondents used their mutation information to search for information about clinical trials and treatments.
When searching for clinical trials, patients turned to media resources and patient organizations for information—not pharmaceutical company websites.
The pandemic affected patients’ ability to have in-person visits with their doctors. Most respondents said they preferred in-person visits to telemedicine and felt their providers could have been more proactive at providing care instructions during the pandemic.