UC Irvine

Background Pain among young adult patients with sickle cell disease (PWSCD) is a highly significant public health problem associated with reduced quality of life. Due to issues uniquely affecting PWSCD, including distrust of research, challenging life situations, debilitating pain, stigma, and logistical challenges (e.g., child or elder care and transportation), SCD researchers often find it challenging to meet sample size and enrollment targets. To our knowledge, all known SCD studies have solely recruited participants in person (e.g., clinics and local organizations) and utilized lengthy interventions with suboptimal recruitment and retention results. Newer recruitment methods, such as online recruitment, need to be explored for research among PWSCD. In this pilot project, we sought to address these challenges by investigating: 1) a novel method of using online outreach to recruit/enroll young PWSCD and 2) a novel, brief online mindfulness intervention adapted from Mindfulness-Oriented Recovery Enhancement (MORE): Mini-MORE designed to treat pain among PWSCD.  Methods Participants (N = 32) were recruited online (e.g., paid advertisements on Facebook and NextDoor; free advertisements on Facebook groups and Reddit) and screened by phone from October 25 to November 8, 2022. Participants watched an online Mini-MORE video. Immediately before and after watching the video, participants rated their pain intensity and unpleasantness on an 11-point numeric rating scale (NRS). Afterward, participants were emailed an individualized link to additional audio recordings for ongoing practice. Immediately before and after accessing the additional recordings, participants rated their pain intensity, anxiety, and depression on an 11-point NRS. T-tests were used to examine the impact of Mini MORE on outcomes at two-time points. Results A total of 84 participants completed the self-screening. The majority of self-screeners resulted from free posts in Facebook groups (77%), Reddit (1%), and Craigslist (6%). Thirty-two (32) eligible participants agreed to join a Zoom meeting to watch the video. The entire Mini-MORE video was viewed by 31 of 32 participants (97%). Pain intensity decreased by 1.7 points (p<0.001, Cohen's d=2.19), and pain unpleasantness decreased by 2.1 points (p<0.001, Cohen's d=2.20). Listening to the supplemental recordings was associated with significant, immediate decreases in pain intensity by 1.3 points (p=0.015, Cohen's d=2.05), anxiety by 1.8 points (p=0.022, Cohen's d=3.10), and depression by 1.74 points (p=0.019, Cohen's d=2.94). Conclusions Results suggest that online methods are feasible in recruiting and enrolling young PWSCD, and the online Mini-MORE intervention is acceptable among PWSCD. Future research is needed to assess whether Mini-MORE is associated with decreased pain symptomology in young PWSCD.