Study protocol for FUTURES: Testing a web-based reproductive health education program for adolescent and young adult males with sickle cell disease

Abstract

Individuals with sickle cell disease are increasingly surviving into adulthood, many of whom have interest in future biological parenthood. Reproductive health knowledge is low among adolescent and young adult males and their caregivers. Their understanding of these topics is needed to optimize their reproductive health outcomes. As such, through collaboration with a community advisory board (adolescents and young adults with sickle cell disease and mothers of adolescent and young adult males with sickle cell disease) and digital design team, we developed a web-based sickle cell disease-focused reproductive health program entitled FUTURES to address these knowledge gaps. For phase I of this two phase feasibility and acceptability study, adolescent and young adult males and their caregivers will complete a pre- and post-program reproductive health knowledge and attitudes questionnaire to assess change in knowledge. In phase II, after learning about fertility testing as part of the FUTURES curriculum, adolescent and young adult male participants are given the option to pursue testing. The two-phase study aims to: 1) develop and test the feasibility, acceptability, and efficacy of a reproductive health web-based educational program at increasing reproductive health knowledge in male adolescent and young adult males with sickle cell disease and their caregivers, and 2) assess feasibility of fertility testing. The long-term goal is to improve reproductive and psychosocial outcomes among adolescent and young adult males with sickle cell disease.

FUTURES: efficacy and acceptability of a novel reproductive health education program for adolescent males with sickle cell disease

“…Despite calls for the integration of reproductive health education into SCD clinics, 11 , 12 to the best of our knowledge, there are no educational tools for male AYAs with SCD that address the genetic inheritance of SCD, methods to prevent unplanned pregnancy and sexually transmitted infections, and potential fertility impacts of SCD and its treatments. Thus, we developed a web-based reproductive health education program entitled Fertility edUcation To Understand ReproductivE health in Sickle cell disease (FUTURES) 13 that is specific for male AYAs with SCD and their caregivers. 10 The aims of this pilot study were to examine the program’s preliminary efficacy in achieving high reproductive health knowledge (RHK) and assess acceptability among male AYAs with SCD and their caregivers.…”

“…AYAs who were ineligible had received a bone marrow transplant (because a fertility consult is a routine part of this procedure) or participated in a community advisory board that informed FUTURES’ development. After obtaining informed consent (and assent if patients were aged <18 years), participants electronically (via the provided tablet or a personal device) completed the following: (1) initial surveys assessing sociodemographics, RHK (using a survey developed by the research team), 10 and the Newest Vital Signs screening 14 ; (2) FUTURES (2023; a ∼10-minute, self-administered education program) 13 ; and (3) follow-up surveys assessing RHK and attitudes and satisfaction with FUTURES, administered to all participants immediately after completion of FUTURES. Medical information (eg, genotype and treatment history) was extracted from electronic medical records.…”