ATTENTION TO SOCIAL DISADVANTAGE IN CANCER-RELATED PATIENT DECISION AIDS: A CRITICAL REVIEW OF U.S. RANDOMIZED CONTROLLED TRIALS

Purpose: International standards that guide the content, development and evaluation of patient decision aids (DAs) call for the use of patient-centered approaches that promote value- and preference-sensitive shared decision-making (SDM). Despite evidence that DAs can be effective in improving SDM for certain conditions and populations, little is known about the development and evaluation of cancer-related DAs tailored for socially disadvantaged subgroups. Our purpose was to critically review published articles describing U.S. randomized controlled trials (RCTs) of cancer-related DAs for: 1) inclusion of socially disadvantaged participants, and 2) evidence that social disadvantages that may potentially influence SDM were considered in DA development or evaluation.

Method: Cancer-related RCTs from the 2014 Cochrane systematic review were identified and supplemented by an updated reviewed of RCTs published through the end of 2012. Abstractions were completed independently by three authors. We evaluated inclusion of socially disadvantaged populations based on documentation of study participants’ gender, race and/or ethnicity, education and/or health literacy, insurance status, language, nativity or religion.

Result: Published articles from 35 U.S. RCTs were identified and reviewed. Most studies were inclusive of socially disadvantaged participants based on gender, race/ethnicity or education/literacy.  Inclusion based on other criteria associated with health inequities in the U.S. was uncommon and related data were infrequently reported. Evidence of attention to social disadvantage subgroups in DA development was documented in less than 25 percent of studies. Evidence of attention to social disadvantage in DA evaluation was found in approximately one-third of studies, although little attention was given to DA features that promoted or hindered SDM in socially disadvantaged subgroups.

Conclusion: Clinicians and other users of DAs should be aware that most cancer DAs have not been developed for or evaluated in socially disadvantaged populations. More detailed information regarding the strategies used to develop and modify DAs for these subgroups would contribute to the development of cancer-related DAs that correspond with the needs, values and preferences of diverse patient populations.