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

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 SCArelated 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.

Economic evaluation of regular transfusions for cerebral infarct recurrence in the Silent Cerebral Infarct Transfusion Trial

“…Similarly, for symptomatic avascular necrosis of the femoral head, the incidence rate ratio was 0.22 (P=0.02) with an incidence rate of 0.49 and 2.25 events per 100 patient-years, respectively. A significantly lower incidence rate of priapism and symptomatic avascular necrosis would lead to high additional cost savings over time [39][40][41][42][43][44] , resulting in regular blood transfusions being more cost-effective if they were included in the analysis. Since we did not include these costs, our cost-effectiveness model for transfusion therapy is conservative.…”

Epidemiology and treatment of priapism in sickle cell disease

“…23 Men with SCD ben e fit from sec ond ary pre ven tion to fore stall cat a strophic com pli ca tions asso ci ated with priapism, such as erec tile dys func tion, penile scar ring, and men tal health mor bid ity. 8 There is cur rently no evi dencebased treat ment strat egy for pre vent ing priapism recur rence. However, the 3 clas ses of drugs already tried in this patient pop u la tion have some anec dotal clin i cal ben e fits.…”

“…Priapism is asso ci ated with a high rate of unrec og nized men tal health chal lenges, includ ing suicidality, depres sion, and anx i ety. 1,8 These fac tors heighten the poor qual ity of life asso ci ated with priapism and could pre clude patients from seek ing med i cal inter ven tion. 1,8 In our clin i cal case, the patient presented with depres sion and sui cidal ide a tion, which warranted refer ral to a psy chi a trist and treat ment with a tri cy clic anti de pres sant (imip ra mine).…”

“…1,4 Priapism is asso ci ated with men tal health mor bid ity, includ ing anx i ety and depres sion. 1,8 An indi vid ual ' s inad e quate knowl edge of priapism, in addi tion to the shame and embar rass ment, may con trib ute to about 50 % of affected indi vid u als fail ing to seek med i cal inter ven tion or even dis cuss the com pli ca tion with their cli ni cians and rel a tives. 1,8,9 Thus, the lack of knowl edge of priapism may add to the underrecognition of the bur den in a clin i cal set ting.…”

“…1,8 An indi vid ual ' s inad e quate knowl edge of priapism, in addi tion to the shame and embar rass ment, may con trib ute to about 50 % of affected indi vid u als fail ing to seek med i cal inter ven tion or even dis cuss the com pli ca tion with their cli ni cians and rel a tives. 1,8,9 Thus, the lack of knowl edge of priapism may add to the underrecognition of the bur den in a clin i cal set ting. 9,10 We review the epi de mi ol ogy and patho bi ol ogy of priapism, along with mech a nis tic ther a peu tic approaches for sec ond ary pre ven tion of priapism in SCD.…”