Yost, Kathleen

PURPOSE Emoji are digital images or icons used to express an idea or emotion in electronic communication. The purpose of this study was to develop and evaluate the psychometric properties of two patient-reported scales that incorporate emoji. METHODS The Emoji Response Scale developed for this study has two parts: the Emoji-Ordinal and Emoji-Mood scales. A pilot study was designed to validate the ordinal nature of the Emoji-Ordinal Scale. Twenty patients were shown all possible pairs of five emoji and asked to select the most positive from each pair. The psychometric ordering was assessed using Coombs unfolding and Thurstone scaling. A separate pilot study was designed to determine which emoji to include in the Emoji-Mood Scale. Ten common feelings experienced by patients with cancer were chosen by the study team. Patients and providers were asked to select the one emoji that best represented each feeling from the selection. The most commonly selected emotions and representative emoji were chosen for the Emoji-Mood Scale. In a randomized study of 294 patients, Spearman correlations, Wilcoxon tests, and Bland-Altman analyses determined the construct validity of the scales compared with Linear Analog Scale Assessments (LASA) and Patient-Reported Outcomes Measurement Information System (PROMIS) scores. RESULTS Ninety-five percent of patients selected the same ordering among the ordinal emoji, and Thurstone scaling confirmed the ordinal nature of the response scale. The construct validity of the scales was high with correlations between the Emoji-Ordinal Scale and the LASA scale of 0.70 for emotional well-being, 0.72 for physical well-being, 0.74 for overall quality of life, and –0.81 for fatigue. Emoji-Mood Scale ratings were strongly related to PROMIS global mental, global physical, fatigue, anxiety, sleep disturbance, and social activity scales ( P < .0001). CONCLUSION This study provides evidence that scales incorporating emoji are valid for collecting patient-reported outcomes.

PURPOSE: This study assessed the long-term quality of life (QOL) of patients with aggressive lymphoma subtypes treated with autologous hematopoietic cell transplant (autoHCT) compared with those without history of transplant. METHODS: Patient-reported QOL measures were prospectively gathered from patients enrolled in the Iowa/Mayo Specialized Program of Research Excellence Molecular Epidemiology Resource cohort with aggressive lymphoma subtypes. QOL was measured using the Functional Assessment of Cancer Therapy-General (FACT-G), Functional Assessment of Chronic Illness Therapy–Fatigue Scale, State-Trait Anxiety Inventory (STAI), and Profile of Mood States instruments and with a numeric rating scale for overall QOL and spiritual QOL. The autoHCT group and no HCT groups were compared at 3 years (FU3) and 6 years (FU6) after lymphoma diagnosis. RESULTS: In total, 980 patients with lymphoma (106 autoHCT and 874 no HCT) diagnosed between 2002 and 2013 were included for analysis. The mean FACT-G total score was similar in the autoHCT and no HCT groups at FU3 (89.9 v 90.1, P = .64) and also at FU6 (91.5 v 89.6, P = .44). No differences between the autoHCT and no HCT groups were identified in the FACT subscales. The STAI identified lower anxiety in the autoHCT group by mean STAI1 (state) at FU3 (30.1 v 33.4, P < .01) and by mean STAI2 (trait) at FU6 (30.1 v 33.5, P = .02). No other clinically meaningful differences were identified between the two groups using the other QOL instruments. CONCLUSION: Patients remaining in remission at 3 and 6 years after diagnosis had a high level of QOL with no significant differences associated with history of treatment with autoHCT.

PURPOSE: Patients' concerns regarding clinical trial (CT) participation include apprehension about side effects, quality of life (QoL), financial burden, and quality of care. METHODS: We prospectively evaluated the experience of patients with multiple myeloma or lymphoma who were treated on CTs (CT group, n = 35) versus patients treated with standard approaches (non-CT group, n = 88) focusing on QoL, financial burden of care, and patients' perception of quality of care over a 1-year period. RESULTS: There were no significant differences in any of the patient-reported outcomes in CT versus non-CT groups. We observed an initial decline in overall QoL in the first 3 months across both groups, driven primarily by physical and functional well-being. QoL gradually improved and was above baseline by month 12. Patients reported highest improvement in the functional well-being subdomain. Patients in both groups reported high satisfaction with the quality of care received, and there were no differences in overall satisfaction, communication with team, or access to care. At baseline, 16%-19% of patients reported financial burden, which increased to a peak of 33% in the CT group and to 49% in the non-CT group over the course of 1 year. There was no significant difference in financial burden in the two groups overall. Most of the patients reported getting all the care that was deemed medically necessary in both groups. However, a significant proportion of patients reported having to make other kinds of financial sacrifices because of their cancer (CT group: 33% of patients at baseline and 21%-40% over 1 year; non-CT group: 19% at baseline and 25%-36% over 1 year). CONCLUSION: Patients treated on CTs reported comparable QoL and quality of care with the non-CT group. A high proportion of patients reported financial burden over time in both groups. Our findings can serve as a guide to educate patients regarding CT participation and highlight the need to address the significant financial burden experienced by patients with cancer.