A patient-derived conceptual framework of lung cancer care priorities.

Abstract

206 Background: Patient-centric healthcare delivery, where patients are the ultimate decision-makers, warrants care evaluated based on patient priorities. A heterogeneous lung cancer patient population fosters variation in care priorities. This study identified care concept domains in a wholly patient-driven manner. Methods: Group concept mapping was used to assess priorities among patients invited from the PatientsLikeMe online community aged ≥18, US residents, and self-reporting lung cancer. In Phase I, 26 patients generated ideas based on the focus prompt: “ What do you want to achieve when it comes to the treatment you are receiving or are considering receiving for your lung cancer?”. 78 ideas were generated over 2 weeks. Supplementation from literature, editing for relatability, independence, and consistency yielded 78 concepts. In Phase II 67 patients used CSGlobalMax® (Concept Systems, 2018) to rate the concepts for importance (1 = not important to 5 = very important); 64 of which grouped and named the ideas into categories of unrestricted size. Multidimensional scaling and hierarchical cluster analysis generated visual maps, average importance, and categorized concept domains. Domains were compared across all patients and by treatment experience (≤1 or > 1 systemic regimens) and stage at diagnosis. Results: Patients were female (78%), white (93%), and mean age of 62 (SD 8.9). 93% reported non-small cell lung cancer, 70% reported Stage III or IV diagnosis, and 58% were classified as early in treatment experience. 11 unique domains were visually represented. In order of average importance the domains were: managing lifestyle (4.52), care team quality, active participation in treatment, treatment goals, treatment options, side effects, social well-being, physical well-being, future options, fulfillment in daily living, and supportive environment (4.01). There was strong correlation between treatment subgroups (r = 0.89), although relative importance of domains shifted. Generalizability is limited. Conclusions: In this patient-driven research approach, patients developed the focus prompt, generated ideas, and structured concepts. The unique domains may help evaluate care value in patient-centric healthcare delivery.