CASE STUDY

How next-generation sequencing of non-small cell lung cancer affects patients’ decision-making

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.