Citations

Fatigue is the problematic symptom identified by patients with cancer. However, fatigue has not been widely examined in caregivers of patients with cancer. In this study, 131 caregivers of patients diagnosed with advanced stage cancer and actively receiving radiotherapy reported experiencing the most difficulties with fatigue (mean 46.9; on a 0-100 scale, with a 10-point difference having clinical meaning) at baseline and at a 6-month follow-up (mean 48.3). This is in sharp contrast to other domains of quality of life and functioning being rated in the 60s, 70s and 80s by the caregivers of patients with cancer. Given the level of fatigue reported by the caregivers of patients with cancer, if confirmed by other investigators in larger and more diverse samples, interventions targeting caregiver fatigue should be explored.

Background Socioeconomic status (SES) is an important determinant of health, but SES measures are frequently unavailable in commonly used datasets. Area-level SES measures are used as proxy measures of individual SES when the individual measures are lacking. Little is known about the agreement between individual-level versus area-level SES measures in mixed urban–rural settings. Methods We identified SES agreement by comparing information from telephone self-reported SES levels and SES calculated from area-level SES measures. We assessed the impact of this agreement on reported associations between SES and rates of childhood obesity, low birth weight <2500 g and smoking within the household in a mixed urban–rural setting. Results 750 households were surveyed with a response rate of 62%: 51% male, 89% Caucasian; mean child age 9.5 years. Individual-level self-reported income was more strongly associated with all three childhood health outcomes compared to area-level SES. We found significant disagreement rates of 22–31%. The weighted Cohen's κ indices ranged from 0.15 to 0.22, suggesting poor agreement between individual-level and area-level measures. Conclusion In a mixed urban–rural setting comprised of both rural and urbanised areas, area-level SES proxy measures significantly disagree with individual SES measures, and have different patterns of association with health outcomes from individual-level SES measures. Area-level SES may be an unsuitable proxy for SES when individual rather than community characteristics are of primary concern.

Examining the patient's subjective experience in prospective clinical comparative effectiveness research (CER) of oncology treatments or process interventions is essential for informing decision making. Patient-reported outcome (PRO) measures are the standard tools for directly eliciting the patient experience. There are currently no widely accepted standards for developing or implementing PRO measures in CER. Recommendations for the design and implementation of PRO measures in CER were developed via a standardized process including multistakeholder interviews, a technical working group, and public comments. Key recommendations are to include assessment of patient-reported symptoms as well as health-related quality of life in all prospective clinical CER studies in adult oncology; to identify symptoms relevant to a particular study population and context based on literature review and/or qualitative and quantitative methods; to assure that PRO measures used are valid, reliable, and sensitive in a comparable population (measures particularly recommended include EORTC QLQ-C30, FACT, MDASI, PRO-CTCAE, and PROMIS); to collect PRO data electronically whenever possible; to employ methods that minimize missing patient reports and include a plan for analyzing and reporting missing PRO data; to report the proportion of responders and cumulative distribution of responses in addition to mean changes in scores; and to publish results of PRO analyses simultaneously with other clinical outcomes. Twelve core symptoms are recommended for consideration in studies in advanced or metastatic cancers. Adherence to methodologic standards for the selection, implementation, and analysis/reporting of PRO measures will lead to an understanding of the patient experience that informs better decisions by patients, providers, regulators, and payers.