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Abstract

Health-related quality of life (HRQL) is a prevalent outcome measure in clinical trials, but it is not known how best to communicate HRQL results to new patients with cancer. The purpose was to explore cancer patients' attitudes toward, and preferences for, 10 visual and written formats for communicating HRQL information. Using standardized qualitative methods, six focus groups were held (two groups in each of three cancer centres) with patients who had completed treatment for cancer at least 6 months earlier. Groups were stratified according to patients' education. To ensure consistency across centres, group moderators used the same detailed guide, training video, and props. Three investigators independently coded the resulting transcripts. Participants also rated each of the 10 presentation formats as to their perceived usefulness. Fourteen men and 19 women with a variety of cancer diagnoses participated; 13 (39%) participated in the three lower-education groups and 20 (61%) in the three higher-education groups. We found that simple formats (simple graphs or written text) were generally preferred to more complex graphical information, regardless of educational level. The same format was rated favourably by the highest proportion of participants in both the high (85%) and low (85%) education level groups. Individual patients, however, varied as to which visual format they most preferred. Patients did not wish to receive HRQL information out of context or without explanation. We conclude that cancer patients desire HRQL information, but vary in their preferences for its communication. Simple formats are generally preferred.

The applications of PROs in clinical practice: what are they, do they work, and why?

“…Patients want information about the impact of treatment options on their HRQoL when making decisions about treatment [38,39] and are capable of interpreting HRQoL data when presented in simple formats [40]. When HRQoL data are presented to them in the decision-making process, it has been shown to influence their decisions about treatment options [41].…”

Systematic evaluation of patient-reported outcome (PRO) protocol content and reporting in UK cancer clinical trials: the EPiC study protocol

“…Patients with cancer value PRO information and may use it to inform complex healthcare decisions. 9 10 For instance, PRO trial results can help patients to assess whether survival benefits of a new drug outweigh potential side effects or may assist patients and their clinicians in choosing between treatment options offering similar survival rates. 11–15 Given their importance: (1) details regarding PRO assessment should be included in the trial protocol, to ensure appropriate data collection and management; 16 17 and (2) PRO results should be fully reported in arising trial publications, to enable timely access by patients, clinicians and policymakers and facilitate integration of findings into clinical practice.…”

Inconsistencies in Quality of Life Data Collection in Clinical Trials: A Potential Source of Bias? Interviews with Research Nurses and Trialists

“…Patients value information on their HRQL [2,3] and may use it to inform complex healthcare decisions [4], for example, choosing between treatments offering similar survival rates [5], or selecting an intervention with the most acceptable side-effect profile [6]. HRQL trial results may inform decision-making in the clinical setting [7], support pharmaceutical labeling claims [8] and influence healthcare policy [9].…”