A shift towards value-based care and reimbursement has highlighted challenges around how to measure “value.” This is especially salient in oncology where traditional economic measures of health technology benefits, especially quality-related life years (QALYs), may not accurately capture the heterogeneous preferences of a diverse group of patients.
To assess the treatment attributes and preferences that patients find most valuable, IVI conducted qualitative research with patients diagnosed with advanced non-small cell lung cancer (NSCLC). The findings from this research are intended to inform the development of the OSVP model focused on EGFR+ NSCLC, particularly the content and structure of the multi-criteria decision analysis portion that allows for customized decision analysis.
Using qualitative methods, IVI conducted in-depth interviews and one focus group with patients diagnosed with metastatic (Stage IV), non-squamous NSCLC residing in the United States. To facilitate data collection, IVI developed two distinct, but complementary discussion guides designed to investigate patients’ treatment decisions from the emergence of initial symptoms and the diagnostic experience through disease maintenance and monitoring. Following IRB review and approval, IVI worked with a survey vendor to recruit participants and conduct interviews and a focus group with patients. Data collection was conducted by members of the study team with graduate training in qualitative research methods, and audio recorded to ensure that the thoughts, opinions, and experiences shared by the participants were accurately captured. Audio recordings were transcribed verbatim, and thematic analysis was conducted to identify factors in treatment decision-making that patients with advanced NSCLC considered most important and to determine which aspects of care had the most value.
A total of 19 participants completed enrollment in the study. The majority (80.0%) of the sample was female, and the mean age was 53.8 (12.1). More than half the sample reported being unemployed (57.9%). With respect to race/ethnicity and education level attained, all but one participant reported White/Caucasian race, with 68.4% of the respondents reporting a college education or higher.
A number of broad themes characterizing patients’ experiences with care were identified through thematic analysis. Patients frequently emphasized the need to make frequent trade-offs in treatment decisions, for example in weighing treatments’ potential efficacy against impacts on quality of life and day-to-day functioning. Patients also highlighted the urgency created by the metastatic nature of their diseases, with a high degree of importance placed on rapid access to information on their treatment response and ability to switch therapies quickly when not responding.
In addition to these broad themes, participants identified specific determinants of value in their experience of treatment, including:
- Care personalized to individual needs and goals that was also coordinated and comprehensive. Patients sought out treatment facilities that could offer a wide range of services from genetic testing to insurance assistance to mental health support.
- Treatments and care that were affordable throughout their treatment journey. For many participants, value in care equated to affordability and treatments that were covered by their insurance with low out-of-pocket costs. Access to clinical trials and financial assistance programs were also considered key components of financial value, as they were stopgaps when treatments were not covered.
- Treatments that offered convenient administration and tolerable side effect profiles. These elements of value were associated with a preserved quality of life (QOL), which has become feasible with targeted treatments. For many participants, the “feeling” of cancer only manifested itself through treatment side effects. Among participants who experienced significant side effects, they were forced to make tradeoffs between continuing treatment or switching to something that may be more tolerable but potentially less efficacious.
How Patients are Partners in this Work
IVI is committed to involving patients and patient-focused organizations in the development and execution of its research and model development work. For this project, we involved patients in the following ways:
- Feedback on study design
- Review of interview protocols, discussion guides and survey instruments
- Review of draft findings and papers
To the greatest extent possible, IVI makes all research materials publicly available.
The following materials are currently available for download here:
- Research Protocol
- IRB Review Letter and Exemption Notice
- Research Instruments
- Eligibility Screener
- Study Information for Patients
- Discussion guidelines
- Final Report