Barriers and facilitators to SRH care in SCD
When asked about what limits SRH discussions with their AYA female patients, 73% of respondents cited lack of time, 47% presence of parents in the room, 46% cited lack of SRH knowledge, 28% patient discomfort, and 21% lack of rapport. Half of adult providers and 17% of pediatric providers reported lack of rapport limited SRH discussions (p=.02). No significant differences between provider types existed for other barriers.
When asked about facilitators to SRH discussions with their AYA female patients, 77% endorsed training curricula or modules, 66% endorsed guidelines from the Foundation for SCD Research (FSCDR), 39% endorsed small group discussions at the SCD Association of America (SCDAA) conference, 74% of respondents believed a standardized partnership with SRH specialists would improve this aspect of care. Related to type of educational resources, 83% preferred online resources, 77% pamphlets or books, 72% a mobile device application with information and resources, and 44% video-based educational modules.
DISCUSSION
This survey explored the attitudes and practices of SCD providers related to SRH of their AYA female patients. The majority of respondents agreed that SRH is an important topic for discussion with AYA women with SCD, SCD provider should be the ones discussing SRH with their patients, and such discussions should be standard practice within SCD clinics. However, there were discrepancies as to the timing, content, and approach of such discussions with this population. The majority of respondents agreed that SRH discussions should happen after menarche in early adolescence\sout. There was wide variation in frequency of discussion of contraception, pregnancy, and teratogenic medications, though providers largely did discuss these at least once. There was a wide variety in providers’ comfort level with use of estrogen-containing CHC, with most preferring these methods and instead opting for progestin-only methods.
Patients, especially AYA, with chronic diseases including SCD, cystic fibrosis, and epilepsy have been shown to have gaps in their SRH knowledge and access.22,24,25 Ownership of SRH discussion is often lacking when a PCP is seen infrequently, especially if an adult subspecialist takes over a pediatric subspecialist’s care of a chronic illness originating in childhood. Discussion of SRH is often complicated by multiple subspecialists. Subspecialists often discuss issues of interest or those more medically specific to the chronic illness to the parents and thus find it uncomfortable or time-consuming to have private discussions with the patients, which has been shown in studies of other providers of patients with chronic illness22,24,25 This may require a larger shift to incentivize or standardize time alone with the AYA to address important SRH concerns.
Our results demonstrate a wide discrepancy in SCD provider attitudes toward forms of contraception that are preferred and acceptable for use by AYA women. We found that providers we surveyed prefer DMPA over other methods, which is supported in the literature.11,15,17,26 There is less evidence for use of hormonal IUDs, but were equally preferred to DMPA by providers in our study, likely due to both having associated benefits of lighter menses and high efficacy.27 There was a substantial proportion of respondents that preferred the copper IUD, which has the adverse effect of worsening dysmenorrhea and menorrhagia, but avoids the reported risks of estrogen.28 When recommending restrictions, the CDC and WHO must balance the risk of pregnancy against the risk of CHC in SCD, where there is limited data.14,29 It is interesting that pediatric providers are more likely to agree with CHC prescription barring other contraindications, indicating that adult providers may assess the risk of CHC more cautiously. This may be due to the greater incidence of thrombosis in adult SCD patients and the long-term sequelae as added risk factors to their CHC use.30,31 Providers of pediatric patients may be more sensitive to the other risks of adolescent unplanned pregnancy.
Similar to providers, women with SCD also lack clarity in contraceptive choice. Finding reliable SRH information is a challenge for any AYA, and AYA women with SCD have particular gaps in knowledge in contraception, puberty, fertility, and pregnancy-related health outcomes.32 Standardizing or incentivizing visits alone with AYA, such as in teen or transition clinics, can help facilitate SRH discussions and, thus, improve patient knowledge.
Strengths of this study include that it is a geographically diverse sample and novel in the SCD population. Limitations include selection bias, as providers who are interested in SRH may have been more likely to complete the survey. Additionally, the survey primarily represented pediatric trained physicians, and therefore, is not representative of all providers of SCD, particularly adult SCD providers. Comparisons shine a light on potential differences across provider types, but should be interpreted cautiously due to our small sample size of adult providers. Recruitment of adult providers as a whole was difficult due to lack of a targeted listserv. The response rate of ASPHO listserv members was limited by email recruitment, and because of the nature of the recruitment strategy, response rate of adult providers was difficult to calculate.
Providers and AYA with SCD would benefit from further evidence-based guidance regarding SRH, especially contraception. Data about contraceptive choice, especially in women with SCD, is a necessary next step to create best practices. Future research in this area could track adverse events following different contraceptive choices in this population. Understanding these choices and patient preferences is essential for providers to adequately counsel patients and give recommendations. Additional data on the use of CHC and levonorgestrel IUDs in this population is also necessary to guide decision-making and prescribing practices. Second, these finding suggest the need that providers of SCD (with others thought leaders in reproductive health) develop some type of consensus on how SRH can be addressed consistently with this population of patients. Respondents endorsed online educational modules and resources, as well as clinical partnerships with SRH providers, would improve their ability to provide SRH care for this population. Some programs have already initiated these partnerships, and this study indicates a need for improvement and standardization.33 This study may be able to help build future programs in education and interventions to improve SRH knowledge and access for patients with SCD.
Overall, this study supports that there is no standardization, wide variety, and clear barriers to SRH discussions for patients with SCD. There is a need for ongoing studies to examine the safety of various methods and training of providers to address reproductive health. Future research related to this study may include patient perspectives on SRH, as well as dissemination of existing SRH information to improve communication and SRH outcomes.
ACKNOWLEDGEMENTS
Thank you to Tracy Imburgia for her expertise and assistance in statistical analysis.
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