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Clinical Trial
. 2022 Jan 1;44(1):19-27.
doi: 10.1097/MPH.0000000000002056.

Psychometric Impact of Priapism on Lives of Adolescents and Adults With Sickle Cell Anemia: A Sequential Independent Mixed-Methods Design

Ibrahim M Idris  1 , Kemberlee Bonnet  2 , David Schlundt  2 , Akib Abba  1 , Jamil Galadanci  3 , Arthur L Burnett  4 , Michael R DeBaun  5
Affiliations
Clinical Trial

Psychometric Impact of Priapism on Lives of Adolescents and Adults With Sickle Cell Anemia: A Sequential Independent Mixed-Methods Design

Ibrahim M Idris et al. J Pediatr Hematol Oncol. .

Abstract

Despite priapism being one of the most frequent complications of sickle cell anemia (SCA) in male individuals, little has been reported about the impact of priapism in this population. The authors used a sequential independent mixed-methods design, which used both international multicenter focus group discussions (n=35) and a quantitative patient-reported outcome measure (n=131) to determine the impact of priapism on men with SCA in Nigeria and the United States. The authors analyzed data from focus groups using an iterative inductive-deductive approach. Comparison of the Priapism Impact Profile data was done using the Kruskal-Wallis H test. Our result showed that priapism, across cultures, is associated with shame and embarrassment. These emotions interfere with timely clinical and family communication about priapism symptoms and complications. Participants were dissatisfied with the quality of care at emergency facilities. The quality of life and physical wellness of men with SCA-related priapism were significantly different for the 3 groups: (1) priapism condition getting better, (2) priapism condition getting worse, and (3) priapism condition remain the same (P=0.002 and P=0.019, respectively). Psychological, sexual, and physical wellbeing are all adversely affected by priapism. Evidence-based methods are necessary for adequate medical, educational, and psychological treatment for recurrent priapism.

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Conflict of interest statement

M.R.D. and his institution are the sponsors of 2 externally funded research investigator-initiated projects. Global Blood Therapeutics (GBT) will provide funding for the cost of the clinical studies. GBT will not be a cosponsor of either study. M.R.D. is not receiving any compensation for the conduct of these 2 investigator-initiated observational studies. Also, M.R.D. is a member of the GBT advisory board for a proposed randomized controlled trial for which he receives compensation. M.R.D. is the Chair of the steering committee for an industry-supported phase II trial (SPARTAN) to prevent priapism in men. The remaining authors declare no conflict of interest.

References

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