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.