Challenges and Strategies: Nationwide Data Collection for an Internet-based Guided Relaxation Intervention in Sickle
Muntaha Ali1, Halle Jonassaint1, Aleah Bedrosian1
1Department of Biobehavioral Nursing Science, College of Nursing, University of Florida, Gainesville, FL.
Summary
This study explored challenges in recruiting and retaining sickle cell disease (SCD) patients for a relaxation intervention. Targeted strategies improved participation and data collection for this vulnerable population.
Area of Science:
- Medical Research
- Clinical Trials
- Patient Engagement
Background:
- Sickle cell disease (SCD) pain is stressful, increasing opioid needs.
- Relaxation interventions may reduce pain and opioid use in SCD outpatients.
- Limited data exists on challenges in SCD studies.
Purpose of the Study:
- Examine recruitment, retention, and data collection challenges.
- Develop strategies for an internet-based relaxation intervention study.
- Improve study success in adult SCD outpatients.
Main Methods:
- Qualitative analysis of an ongoing 6-month RCT.
- 122 adult SCD outpatients (mean age 33.4) participated.
- Data collected on challenges via research specialists.
Main Results:
- 53% of participants reported 126 challenges.
- Common issues included internet/technical problems (33%) and adherence (17%).
- Hospitalization (31%) and pain (16%) also impacted data collection.
Conclusions:
- Findings highlight recruitment, retention, and data collection challenges in SCD studies.
- Targeted strategies like team training and active engagement are crucial.
- Enhancing recruitment sites can improve study outcomes in this population.
