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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