Introduction: Studies focusing on sexual health in relation to sickle cell disease are rare, with a PubMed search producing only 70 results, and research in this area focusing specifically on incomplete data is severely limited. The objective of this analysis is to uncover differences between completed surveys and incomplete surveys among adult survey participants with sickle cell disease to reveal a more comprehensive picture of the sexual health concerns of patients with sickle cell disease.

Methods: A study targeting sexual health concerns among adults aged 18 years old and older with a sickle cell disease diagnosis was conducted between August 2019 and August 2020 at Duke's Adult Comprehensive Sickle Cell Center. Survey questions consisted of demographic questions as well as categories of sexual health concerns for both male and female participants. Study participation was not compensated and was completely voluntary. Patients were approached and consented by clinic staff following appointment check-in. Surveys were then aggregated into an Excel sheet and underwent data analysis. Incomplete surveys were sorted out on the basis of one or more incomplete questions and/or demographic responses. Incomplete and complete surveys were further analyzed in Microsoft Excel.

Results: The demographic breakdown of completed surveys and incomplete surveys showed significant differences. Completed surveys consisted of 48% (N=48) female and 52% (N=51) male responses. Incomplete surveys consisted of more female responses with a 59% (N=32) female and 41% (N=22) male. Chiefly, the analysis of incomplete surveys revealed that male participants were more concerned about relationship changes with an intimate partner than female participants, with 9% of males and 6% of females reporting this concern. This presents a contrast to the completed survey group in which 6% of males and 8% percent of females were concerned about relationship changes with an intimate partner. Though female respondents had more incomplete surveys, male respondents expressed fewer concerns as compared to the completed surveys group. A full analysis of incomplete surveys revealed that the concerns of scrotal tenderness, penile tenderness, pain and discomfort with masturbation, pelvic pain, and difficulty achieving a comfortable position for intercourse were completely missing from male respondents with incomplete surveys. However, these same categories had a reporting percent in the completed surveys category among male respondents, with each category having 2% to 10% of male respondents reporting it as a concern. For female respondents, only one category, pain or discomfort with masturbation was absent from the analysis of incomplete surveys and had a 2% reporting rate among completed surveys.

Conclusion: Overall, our results show that there are discrepancies in survey results that may disproportionately affect the measurement of sexual health concerns among adults with sickle-cell disease. Female participants were shown to comprise 59% percent of incomplete surveys versus 48% percent of complete surveys, indicating that there is an area of improvement to encourage more female responses. Additionally, male participants with incomplete surveys had many more concerns unreported, indicating there may be discomfort with addressing these concerns. Cliniciansshould be encouraged to takethe opportunity to allow more open discussions of such topics with male patients. In conclusion, incomplete surveys offer additional insight into the pressing issues of the sexual health concerns of adult patients with sickle cell disease that may be under-reported otherwise in this understudied demographic.

No relevant conflicts of interest to declare.

Author notes

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Asterisk with author names denotes non-ASH members.

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