Visualizing Health Related Quality of Life (HRQoL): understanding comprehension of HRQoL graphs in the allogeneic hematopoietic cell transplant setting.

PURPOSE: As survival improves for allogeneic hematopoietic cell transplant (alloHCT) recipients, discussions about health-related quality of life (HRQoL) become increasingly important. Previous research has suggested best practices for sharing HRQoL data graphically, but not in the alloHCT setting. This study aimed to evaluate comprehension of graphical displays of HRQoL among stakeholders in alloHCT and to make recommendations for displaying clinically concerning HRQoL. METHODS: An online survey assessed comprehension of HRQoL graphs among alloHCT recipients, their caregivers, and care team members. Participants were randomized to see 8 of 32 unique graphs, which varied in how clinically concerning scores were indicated (primary comparison), HRQoL domain, and score pattern. Four comprehension questions followed each graph. Open-ended questions queried for graph design preferences. Qualitative interviews with care team members assessed priorities for using HRQoL graphs in clinical settings. RESULTS: 190 patients, 38 caregivers, and 18 care team members completed surveys. Median comprehension score was 31/32 across all groups, with wider ranges among patients (5-32) and caregivers (6-32) than care team members (22-32). Threshold line graphs were more likely to be interpreted correctly by adult patients than red circle graphs (OR, 6.07; 95% CI 2.34, 15.8. 78% of participants preferred the threshold design. Qualitative interviews with seven care team members revealed four implementation-related themes: a need for clear guidance, improved communication, integration with existing systems, and impact to patients. CONCLUSIONS: Comprehension of HRQoL graphs was high among all alloHCT stakeholder groups, providing confidence for their use in clinical settings. IMPLICATIONS FOR CANCER SURVIVORS: The findings of this study suggest that HRQoL graphs are comprehensible among key alloHCT stakeholder groups, regardless of health literacy level. Results also show that threshold lines are a preferred and universally understood method for distinguishing clinically concerning HRQoL and that care team members are motivated to use HRQoL graphs with patients.

Duke Scholars

Author Kathryn Eve Flynn Population Health Sciences