Keys to Recruiting and Retaining Seriously Ill African Americans With Sickle Cell Disease in Longitudinal Studies: Respectful Engagement and Persistence.

Marie L SuarezJudith M SchlaegerVeronica AnguloDavid A ShueyJesus CarrascoKeesha L RoachMiriam O EzenwaYingwei YaoZaijie Jim WangRobert E MolokieDiana J Wilkie

Published in: The American journal of hospice & palliative care (2019)

Patients' struggles with illness, chronic pain, and their life situations resulted in many challenges to recruitment and completion of study visits. Important to overcoming challenges was gaining the trust of patients with SCD and a participant-centered approach. Early identification of potential problems allowed strategies to be instituted proactively, leading to success.

Keyphrases

chronic pain
end stage renal disease
newly diagnosed
ejection fraction
chronic kidney disease
social media
prognostic factors
pain management
patient reported outcomes
risk assessment