Identifying patient preferences for communicating risk estimates: A descriptive pilot study

Abstract

BackgroundPatients increasingly seek more active involvement in health care decisions, but little is known about how to communicate complex risk information to patients. The objective of this study was to elicit patient preferences for the presentation and framing of complex risk information.MethodTo accomplish this, eight focus group discussions and 15 one-on-one interviews were conducted, where women were presented with risk data in a variety of different graphical formats, metrics, and time horizons. Risk data were based on a hypothetical woman's risk for coronary heart disease, hip fracture, and breast cancer, with and without hormone replacement therapy. Participants' preferences were assessed using likert scales, ranking, and abstractions of focus group discussions.ResultsForty peri- and postmenopausal women were recruited through hospital fliers (n = 25) and a community health fair (n = 15). Mean age was 51 years, 50% were non-Caucasian, and all had completed high school. Bar graphs were preferred by 83% of participants over line graphs, thermometer graphs, 100 representative faces, and survival curves. Lifetime risk estimates were preferred over 10 or 20-year horizons, and absolute risks were preferred over relative risks and number needed to treat.ConclusionAlthough there are many different formats for presenting and framing risk information, simple bar charts depicting absolute lifetime risk were rated and ranked highest overall for patient preferences for format.

Lifetime Risk of ESRD

“…22 A study with the objective to elicit patient preferences for the presentation and framing of risk information concluded that patients preferred health risks to be framed in absolute terms and lifetime estimates with a scale of x of 100. 23 The benefits of reporting lifetime risk estimates have also been observed. The widely publicized lifetime risk of breast cancer, estimated to be one in eight (12.6%) for women in the United States, 11 is believed to have contributed to the increase in screening mammogram for early disease detection.…”

Lifetime risk of diabetes among First Nations and non–First Nations people

“…Indeed, one study found that patients preferred their health risks to be presented in absolute terms and that their lifetime estimate of risk be given in an "X in 100" format. 51 In addition, merits of reporting lifetime risk estimates have been observed. For instance, the widely publicized lifetime risk of breast cancer among American women (estimated to be 1 in 8 [12.6%]) 52 is believed to have influenced the increase in screening mammography for early disease detection.…”

Type 2 diabetes: lifetime risk of advancing from prediabetes

“…There has been great interest in patients being involved in decision making, and a number of studies have explored patient preferences for presentation and framing of risk information. 3 These have shown that lifetime risk estimates are preferred over 10 or 20 year risk estimates, and absolute risk estimates are preferred over relative risks. 3 There is therefore now a move from using 10-20% risk thresholds towards using lifetime risk, which measures the cumulative risk of developing a disease during the remainder of an individual's life.…”

“…3 These have shown that lifetime risk estimates are preferred over 10 or 20 year risk estimates, and absolute risk estimates are preferred over relative risks. 3 There is therefore now a move from using 10-20% risk thresholds towards using lifetime risk, which measures the cumulative risk of developing a disease during the remainder of an individual's life. 4 In a linked article published today, Ligthart and colleagues use data from the prospective Rotterdam Study based in the Netherlands (N=10,050; up to 14.7 years follow-up) to alert us to the high burden of absolute lifetime risk at population level of developing pre-diabetes or progressing from pre-diabetes to diabetes and then onto insulin therapy.…”