Challenges and Strategies: Nationwide Data Collection for an Internet-based Guided Relaxation Intervention in Sickle Cell Disease

Background: The pain of sickle cell disease (SCD) is often stressful and increases the need for opioids. Relaxation and/or distraction interventions may reduce stress, pain, and opioid use in outpatients with SCD. There is limited information regarding challenges and strategies for successful recruitment, retention, and data collection for a relaxation and/or distraction study in this population. Aim: The authors examined recruitment, retention, and data collection challenges for the participants in a study of an internet-based guided relaxation intervention to devise strategies to address them. Methods: Qualitative data from an ongoing 6-month randomized controlled trial of a relaxation intervention was used. Participants (N = 122) had a mean age of 33.4 ± 10.6 years (range = 18-65), were mostly African American (93%) and female (68%), and were enrolled between March 2021 and May 2024 in collaboration with SCD clinics and communities. Participants completed baseline measures and were randomized to control or experimental groups. Research specialists documented all participant-reported challenges. Results: Of 122 participants who completed the study, 65 (53%) reported 126 occurrences of challenges: 15 (12%) reported internet issues, 27 (21%) reported technical difficulties with the web-based program or Galaxy tablet, 4 (3%) reported problems using medication devices, 21 (17%) reported trouble adhering to specific data entry time windows, 39 (31%) had missing data points due to hospitalization, and 20 (16%) reported overwhelming pain at home. Several targeted strategies were used to overcome these challenges. Conclusion: Findings provide insights into the challenges encountered in study recruitment, retention, and data collection when assessing adult outpatients with SCD. Addressing these challenges through targeted strategies, including practical team training, active engagement with participants, and efforts to add recruitment sites, can enhance recruitment, retention, and data collection in this population.