Contraceptive Methods and the Impact of Menstruation on Daily Functioning in Women With Sickle Cell Disease

Melissa E. Day, BS; Sarah-Jo Stimpson, MD; Mark Rodeghier, PhD; Djamila Ghafuri, MBBS; Michael Callaghan, MD; Ahmar Urooj Zaidi, MD; Bryan Hannan, MS; Adetola Kassim, MD, MS; Andra H. James, MD, MPH; Michael R. DeBaun, MD, MPH; Deva Sharma, MD, MS

Disclosures

South Med J. 2019;112(3):174-179. 

In This Article

Results

Response Rate

A total of 107 women were approached for the study at Vanderbilt University Medical Center and Wayne State University Medical Center. One person was excluded because of menopause and another declined to participate before informed consent was obtained. Two participants did not complete the surveys after informed consent was obtained. The final response rate, defined as the number of participants who completed surveys of those approached, was 96% (103/107). A total of 93/103 (90.3%) were recruited from Vanderbilt University Medical Center. All of the patients who were approached at Wayne State University consented to participate in the study (10/10).

Participant Characteristics

We surveyed 103 women—76 adults and 27 adolescents (Table 2). The median (interquartile range) age was 24 (16) years. The majority of the participants had the HbSS phenotype (66.0%, 68/103), and smaller proportions of women had HbSC or other phenotypes. Approximately half of the participants were receiving hydroxyurea therapy (49.5%, 51/103), and approximately one-third were receiving regular blood transfusion therapy (31.1%, 32/103).

Approximately 12.7% (13/102) experienced an average duration of menstruation of >7 days (Table 2). Approximately half (48.0%, 49/103) experienced menstruation for 5 to 7 days. Most women used three to four menstrual products per day of menstruation, with a smaller proportion requiring more than four products per day (Table 2). HbSS phenotype was not associated with the duration of menstruation (P = 0.12).

A total of 63.1% (65/103) met the criteria for dysmenorrhea (95% confidence interval [CI] 0.54–0.73). Specifically, 59.2% (61/103) of the entire cohort met criteria for primary dysmenorrhea, whereas 3.9% (4/103) met the criteria for secondary dysmenorrhea, based on an underlying diagnosis of endometriosis (n = 2) or fibroids (n = 2). Sickle cell phenotype was not associated with dysmenorrhea (P = 0.79).

Approximately half (49/102) of the surveyed women reported that they were sexually active. A little more than half (51.5%, 53/103) were using at least one form of contraception (Table 2), and 65.3% (32/49) who were sexually active reported using some form of contraception. Approximately 67.9% (36/53) who reported using contraception identified as using a hormone-based form. The frequencies of the usage of contraceptive methods are detailed in Figure 1. The use of hormonal contraception was not associated with duration of menses (P = 0.62), dysmenorrhea (P = 0.58), number of days with acute vaso-occlusive pain during menstruation (P = 0.49), number of nights with sleep disturbance (P = 0.37), or number of days with difficulties taking care of self (P = 0.13). The use of progesterone intrauterine devices (n = 11) was not associated with prolonged menstrual bleeding (P = 1.00).

Figure 1.

Contraceptive methods used in women with sickle cell disease (n = 53).

A total of 6.9% of women (7/102) met the criteria for both dysmenorrhea and prolonged menstrual bleeding (95% CI 1.9%–11.8%), and 30.1% (31/103) did not meet the criteria for either dysmenorrhea or prolonged menstrual bleeding. Two of 31 women without dysmenorrhea or prolonged menstrual bleeding did not answer the mSCPBI-Y survey regarding QOL measures. The median (interquartile range) total score on the mSCPBI-Y survey for women with both dysmenorrhea and prolonged menstrual bleeding was 13 (4.5), compared with 1 (6) in those with neither.

Approximately 57% (4/7) of those with both dysmenorrhea and prolonged menstrual bleeding indicated sleep difficulties on many days or every day of menstruation (95% CI 0.18–0.90), compared with 6.9% (2/29) with neither (95% CI 00%–0.23%, P = 0.008). When asked how many days during their menstrual period women experienced an inability to do things they previously enjoyed, 42.9% (3/7) with both dysmenorrhea and prolonged menstrual bleeding experienced this inability many days or every day of their last menstrual cycle (95% CI 0.10–0.82), compared with 3.6% (1/28) with neither (95% CI 0.00–0.18, P = 0.003). Differences also were found in those with both dysmenorrhea and prolonged menstrual bleeding and those with neither in terms of the number of days they felt sad, mad, or upset as a result of vaso-occlusive pain occurring with menstruation (P = 0.001). These results are summarized in Figure 2.

Figure 2.

Modified Sickle Cell Disease Pain Burden Interview-Youth survey results regarding quality of life metrics in (a) women with both dysmenorrhea and prolonged menstrual bleeding (n = 7) compared with (b) women with neither dysmenorrhea nor prolonged menstrual bleeding (n = 29), referring to 0 to 7 days before or during their last menstrual period.

Even when not menstruating during the last 30 days, women with both dysmenorrhea and prolonged menstrual bleeding experienced an inability to do things they enjoyed many days or every day (71.4%, 5/7; 95% CI 0.29–0.96), compared with those with neither (13.8%, 4/29; 95% CI 0.04–0.32, P = 0.006).

Independent of prolonged menstrual bleeding, women with dysmenorrhea also experienced more days with poor QOL during their menstrual period compared with those without dysmenorrhea. Of the women with dysmenorrhea, 29.0% (18/62) experienced sleep disturbances many days or every day (95% CI 0.18–0.40), compared with 5.7% (2/35) of women without dysmenorrhea (95% CI 0.00–0.13, P = 0.006), and 22.6% (14/62) of women with dysmenorrhea experienced periods of time when they were unable to do things they enjoyed many days or every day (95% CI 0.12–0.33), compared with 2.9% (1/34) of women without dysmenorrhea (95% CI 0.00–0.09, P = 0.011).

Regardless of dysmenorrhea status, women with prolonged menstrual bleeding did not have significant differences in number of days with sleep disturbance (P = 0.07) or inability to do things they enjoyed (P = 0.40) during their last menstrual period compared with women without prolonged menstrual bleeding.

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