Preferences and experiences of parents/guardians of youth with epilepsy and intellectual disability on reproductive health counseling.

OBJECTIVE: To explore the experiences and preferences of parents/guardians of adolescents and young adults (AYA) of childbearing potential with co-occurring epilepsy and intellectual disability (ID) regarding counseling by neurologists on sexual and reproductive health (SRH) topics such as pregnancy, contraception, menstruation, and folic acid supplementation. METHODS: We conducted semi-structured interviews with parents/guardians of AYAs (12-28 years old) of childbearing potential with co-occurring epilepsy and ID, recruited from a tertiary-care children's hospital. We confirmed the diagnoses of epilepsy and ID with the patient's neurologist and parent/guardian. All degrees of ID (e.g. mild/moderate/severe) were eligible. We audio-recorded and transcribed interviews. Two coders performed qualitative thematic analysis. RESULTS: Twenty-five parents/guardians completed interviews. Themes included: (1) Parents/guardians believe their child to be immune from sexual abuse due to their supervision, yet desire counseling about abuse recognition and prevention, which they also report not occurring (2) A common opinion was that counseling on menstruation was more relevant to their child's life than counseling about pregnancy-related topics (3) Parents/guardians reported a lack of counseling on pregnancy-related topics such as folic acid supplementation and teratogenesis and generally also reported some degree of interest in hearing about these topics from neurologists (4) Parents/guardians also reported a lack of counseling on drug interactions between contraception and ASMs, and were highly interested in learning more about this topic (5) Parents/guardians want neurologists to initiate annual comprehensive SRH counseling at puberty about most topics, but report that they often initiate SRH discussions themselves. CONCLUSION: Parents/guardians of AYAs with epilepsy and ID prefer more frequent, neurologist-initiated, comprehensive conversations surrounding SRH particularly emphasizing menstruation and sexual abuse recognition/prevention. Findings may inform professional and patient education and health systems interventions including development of discussion guides and/or decision aides to improve SRH care for AYAs with epilepsy and ID.

Exploring Reproductive Health Decision Experiences and Preferences of Women With Pediatric-Onset Inflammatory Bowel Diseases.

Background: Women with inflammatory bowel diseases (IBDs), such as Crohn's disease or ulcerative colitis, face several disease-specific concerns related to their reproductive health decisions. This study explored the reproductive health decision-making experiences and preferences of women with IBD to discover ways to improve this aspect of comprehensive care. Methods: We recruited women ages 18-44 years with IBD to participate in individual, semistructured interviews exploring their experiences and attitudes toward parenthood, pregnancy, contraception, and family planning care. Two independent coders performed analysis using an inductive and deductive coding approach and identified key themes. Results: Twenty-one women with IBD participated in interviews (average age 24.7 ± 5.9 years, range 18-43 years; average age of diagnosis 14.1 ± 2.0 years). We identified 4 key themes: (1) Nulliparous women who do not currently desire pregnancy appear to lack reproductive health knowledge; (2) Women with IBD lack clarity regarding the role IBD plays in contraceptive choice; (3) Related to pregnancy, women are concerned about the heredity of IBD, antepartum disease activity, and the safety of their current medications; (4) Women with IBD typically default to their reproductive health provider for reproductive health care and counseling, but they expect their gastroenterologist to initiate relevant reproductive health discussions with them and to provide information in the context of their disease. Conclusions: Women have concerns about the effects of IBD on pregnancy, parenthood, and contraceptive choice; however, many have had limited or no discussion with their gastroenterologist about the topic.

A survey of child neurologists about reproductive healthcare for adolescent women with epilepsy.

OBJECTIVE: To evaluate child neurologists' knowledge, attitudes, and practices regarding sexual and reproductive health (SRH) care for adolescent and young adult women with epilepsy (WWE). METHODS: Child neurologists (including attending physicians, residents, fellows, and advanced practitioners) completed an online survey distributed through subspecialty listservs. We analyzed results using descriptive statistics, chi-square, and logistic regression. RESULTS: Two hundred eight child neurologists completed the survey. Most believed that child neurologists should counsel young WWE on: teratogenesis (99%, n = 206/207), contraception-antiseizure medication interactions (96%, n = 194/202), pregnancy (95%, n = 198/206), contraception (89%, n = 184/206) and folic acid supplementation (70%, n = 144/205). Fewer respondents felt confident with such counseling (teratogenesis: 90%, n = 188/208, drug interactions: 65%, n = 133/208, pregnancy 75%, n = 156/208, contraception: 47-64%, n = 96-134/208, p < 0.05). Ninety-five percent (n = 172/181) reported ever discussing SRH with typically developing young WWE, compared to 78% (n = 141/181) for young WWE with mild intellectual disability (p < 0.01). One third (n = 56/170) who ever discussed SRH did not do so routinely. Respondents correctly answered 87% ±â€¯5% of knowledge questions about SRH for WWE, 80% ±â€¯4% of questions about teratogenic antiseizure medications, and 61% ±â€¯7% of questions about contraception-antiseizure drug interactions. The greatest barrier to SRH care was time constraints (80%, n = 149/186). The majority (64%, n = 119/186) identified solutions including longer appointment times and co-managing SRH care with other specialties. CONCLUSIONS: Findings reveal gaps in SRH care by child neurologists for adolescent and young adult WWE, especially those with mild intellectual disability. Provider-identified barriers and solutions may serve as targets to improve SRH care for this population.

Exploring the Preferences of Women Regarding Sexual and Reproductive Health Care in the Context of Rheumatology: A Qualitative Study.

OBJECTIVE: To explore the sexual and reproductive health (SRH) care and counseling needs of young women with rheumatic diseases in the context of their rheumatology care. METHODS: Semistructured qualitative telephone interviews were conducted with female patients with rheumatic diseases ages 18-45 years (n = 30). Women were recruited from outpatient rheumatology clinics in western Pennsylvania. Interviews were audiorecorded and transcribed verbatim. A codebook was inductively developed based on the interview transcripts, and the finalized coding was used to conduct a thematic analysis. RESULTS: Four themes emerged from interviews: 1) women want rheumatologists to initiate conversations about SRH and to revisit the conversation over time; 2) women desire clear and complete information regarding fetal, pregnancy, and infertility risks associated with their diseases and disease-modifying antirheumatic drugs (DMARDs); 3) women want to be treated holistically, with SRH addressed in the context of their life circumstances and personal values in addition to their rheumatic diseases; 4) women generally feel that they are intermediaries between their rheumatologists and obstetrician-gynecologists (OB/GYNs), but preferred for providers to communicate directly with one another about their SRH. CONCLUSION: Patients strongly desired rheumatologists to play an active role in their SRH, by initiating family planning conversations, providing SRH education in the context of their diseases and DMARDs, and directly coordinating SRH care with OB/GYNs. To meet patients' SRH needs, further work is needed to clarify the specific role of rheumatologists in providing SRH care and to identify ways to better facilitate communication between rheumatologists and reproductive health care providers.