Factors that influence unproven stem cell intervention seeking behavior: A qualitative analysis of U.S. patients considering or having undertaken unproven stem cell interventions

Chronic disease patients seeking information about unproven stem cell interventions (SCIs) routinely encounter misinformation. Identifying differences among patients with little interest in unproven SCIs (low seekers) from those with high interest (high seekers) would help in developing patient communication interventions. This study characterizes patient knowledge, information sources, attitudes, and emotion of 36 patients and carers through in-depth interviews and reports three themes: knowledge; attitudes about safety, efficacy and expectations; and desperation. Both cohorts had low health and science literacy on stem cells and clinical translation. Low seekers reported significant risks whereas high seekers tended to be unaware or dismissive of risks of unproven SCIs and expressed modest to high benefits. Stress, abandonment, and hopelessness were the emotions expressed by patients who were desperate for an unproven SCI. Knowing the factors that influence diverse attitudes surrounding the intent to undergo unproven SCIs will inform the design of behavioral interventions.