Patients place a high value on therapies that provide a chance of durable or "tail-of-the-curve" survival, whereas physicians do not. Value frameworks should incorporate measures of tail-of-the-curve survival gains into their methodologies.

Dasatinib and nilotinib were more effective than imatinib as first-line therapy for CML in a community setting, as observed in descriptive and univariate analyses. The frequency of cytogenetic and molecular monitoring was lower than that recommended by current guidelines, including patients with no molecular or cytogenetic assessments during the 18-month follow-up. Therefore, MSH/USON is working toward improving compliance with response monitoring guidelines.

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30 Background: While numerous studies have examined the outcomes of individuals recently diagnosed with cancer, less is known about the well-being of long-term (LT) cancer survivors. Methods: Using the Health and Retirement Study (HRS), a nationally representative survey of US residents over age 50, we defined four cohorts: US residents over age 50, individuals recently diagnosed with cancer (≤4 years from diagnosis), LT cancer survivors (>4 years from diagnosis) and individuals with a chronic condition (diabetes, heart disease, hypertension, lung disease or prior stroke). We compared well-being measures across cohorts. We imputed total medical spending using the Medical Expenditure Panel Survey and the Medicare Current Beneficiary Survey. Results: We identified 22,034 US residents over age 50; 754 individuals recently diagnosed with cancer; 1,764 LT survivors; and 12,874 individuals with chronic illness. Over the biannual survey waves from 2004-2012, this amounted to 22,034; 3,880; 8,480; and 57,363 person-years, respectively. (The 50+ cohort was analyzed in 2010, the most recent year in which the HRS was nationally representative.) Given the large samples, most differences between LT survivors and other cohorts were statistically significant (p<0.05). However, LT survivors’ outcomes were often closer to those of individuals with chronic illness than to the recently diagnosed. Earnings if employed of the recently diagnosed and self-reported health of the chronically ill were not significantly different from LT survivors. Conclusions: Although cancer has a negative impact on well-being in the short term, over time cancer survivors’ well-being improves, becoming more similar to that of individuals with a chronic condition. [Table: see text]

Background: Anemia is a frequent complication of chronic kidney disease (CKD) that negatively affects patients' health-related quality of life. Methods: We conducted qualitative concept elicitation (CE) and cognitive debriefing (CD) interviews to assess the frequency, duration, and severity of symptoms and impacts associated with anemia of CKD and to facilitate the development of a new patient-reported outcome (PRO) measure. We interviewed 36 patients with CKD and hemoglobin levels ≥8.0 to <12.0 g/dL using a semi-structured interview guide developed specifically for this study until saturation was reached. We used MAXQDA to perform qualitative analysis of interview transcripts to determine the most relevant symptoms and impacts (based on the frequency of concept mentions) experienced by participants. Results: Most participants had stage 4/5 CKD (81%) and were being treated with an erythropoietin stimulating agent (69%). Spontaneously reported symptoms included feeling tired (79%), shortness of breath (39%), and weak/ lacking strength (36%). We developed the Chronic Kidney Disease and Anemia Questionnaire (CKD-AQ), which includes 23 items assessing frequency and severity of the most relevant symptoms and impacts identified by patients with anemia of CKD. The CD interviews confirmed the clarity and relevance of the concepts identified in the CE phase. Conclusion: The CKD-AQ is a novel PRO measure that captures the frequency and severity of the most relevant symptoms and impacts associated with anemia of CKD. Future studies will evaluate its psychometric properties and its potential utility in anemia management.