Challenges and directions in epilepsy diagnostics and therapeutics: Proceedings of the 17th Epilepsy Therapies and Diagnostics Development conference.

Substantial efforts are underway toward optimizing the diagnosis, monitoring, and treatment of seizures and epilepsy. We describe preclinical programs in place for screening investigational therapeutic candidates in animal models, with particular attention to identifying and eliminating drugs that might paradoxically aggravate seizure burden. After preclinical development, we discuss challenges and solutions in the design and regulatory logistics of clinical trial execution, and efforts to develop disease biomarkers and interventions that may be not only seizure-suppressing, but also disease-modifying. As disease-modifying treatments are designed, there is clear recognition that, although seizures represent one critical therapeutic target, targeting nonseizure outcomes like cognitive development or functional outcomes requires changes to traditional designs. This reflects our increasing understanding that epilepsy is a disease with profound impact on quality of life for the patient and caregivers due to both seizures themselves and other nonseizure factors. This review examines selected key challenges and future directions in epilepsy diagnostics and therapeutics, from drug discovery to translational application.

Current state of the epilepsy drug and device pipeline.

The field of epilepsy has undergone substantial advances as we develop novel drugs and devices. Yet considerable challenges remain in developing broadly effective, well-tolerated treatments, but also precision treatments for rare epilepsies and seizure-monitoring devices. We summarize major recent and ongoing innovations in diagnostic and therapeutic products presented at the seventeenth Epilepsy Therapies & Diagnostics Development (ETDD) conference, which occurred May 31 to June 2, 2023, in Aventura, Florida. Therapeutics under development are targeting genetics, ion channels and other neurotransmitters, and many other potentially first-in-class interventions such as stem cells, glycogen metabolism, cholesterol, the gut microbiome, and novel modalities for delivering electrical neuromodulation.

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.

Lamotrigine and exogenous estrogen among females with epilepsy: A retrospective analysis of administrative claims data.

OBJECTIVE: Exogenous estrogen reduces lamotrigine serum concentrations. Little is known about whether providers adjust lamotrigine doses for addition of exogenous estrogen among people with epilepsy, despite expert recommendations. We determined the incidence of dose increases in lamotrigine following incident prescription of estrogen among females with epilepsy (FWE) in claims data. METHODS: We used Optum's de-identified Clinformatics® Data Mart Database to create a cohort of U.S. FWE prescribed lamotrigine at a stable dose, with a subsequent prescription for estrogen from 2011 to 2021. We calculated cumulative incidence functions of dose increases in lamotrigine following prescription of exogenous estrogen. We performed a Cox proportional hazards model for multiple candidate predictors of a lamotrigine dose increase. RESULTS: The cohort included 643 FWE, with median age of 31 (interquartile ratio [IQR] 20-42). The cumulative incidence of any lamotrigine increase was 28% (95% confidence interval [CI] 25%-32%). The median number of days after the first estrogen fill until the first lamotrigine adjustment was 118 (IQR 48-188). In unadjusted Cox models, older age, use of estrogen in hormone replacement therapy as opposed to contraception, and annual household income of $50,000-$99,999 (compared with <$50,000) were significant negative predictors of a dose adjustment in lamotrigine with hazard ratios (HRs) of 0.82 (95% CI 0.72-0.92), 0.63 (95% CI 0.42-0.95), and 0.62 (95% CI 0.40-0.95). In the adjusted Cox model, age and income remained significant predictors with HRs of 0.79 (95% CI 0.66-0.94) and 0.59 (95% CI 0.36-0.95). CONCLUSION: Dose increase of lamotrigine following addition of exogenous estrogen is rare among U.S. FWE, with potential disparities based on age and income level. More guidance may be needed for providers on this topic.

A retrospective textual analysis of sexual and reproductive health counseling for adolescent and young adult people with epilepsy of gestational capacity.

Rationale The American Academy of Neurology (AAN) recommends annual sexual and reproductive health (SRH) counseling for all people with epilepsy of gestational capacity (PWEGC). Child neurologists report discussing SRH concerns infrequently with adolescents. Limited research exists regarding documentation of such counseling. METHODS: We retrospectively studied clinical notes using natural language processing to investigate child neurologists' documentation of SRH counseling for adolescent and young adult PWEGC. We segmented notes into sentences and evaluated for references to menstruation, sexual activity, contraception, folic acid, teratogens, and pregnancy. We developed training sets in a labeling application and used machine learning to identify additional counseling instances. We repeated this iteratively until we identified no new relevant sentences. We validated results using external reviewers; after removing sentences reviewers disagreed on (n = 13/400), we calculated Cohen's kappa values between the model and reviewers (>0.98 for all categories). We evaluated labeled texts for each patient per calendar year with descriptive statistics and logistic regression, adjusting for race/ethnicity, age, and teratogen use. RESULTS: Data comprised 971 PWEGC age 13-21 years with 2277 patient-years and 3663 outpatient child neurology notes. Nearly half of patient-years lacked SRH counseling documentation (49.1%). Among all patients, 38.0% never had SRH counseling documented. Documentation was present regarding menstruation in 26.7% of patient-years, folic acid in 25.0%, contraception in 21.9%, pregnancy in 3.5%, teratogens in 3.0%, and sexual activity in 1.8%. Documentation regarding menstruation and contraception was associated with prescription of antiseizure medications that have a higher risk of teratogenic effects (OR = 1.27, p = 0.020, 95% CI = [1.04,1.54]; OR = 1.27, p = 0.027, 95% CI = [1.03,1.58]). Documentation regarding contraception, folic acid, and sexual activity was increased among older patients (OR = 1.28, p < 0.001, 95% CI = [1.21,1.35]; OR = 1.26, p < 0.001, 95% CI = [1.19,1.32]; OR = 1.26, p = 0.004, 95% CI = [1.08,1.47]). Documentation regarding sexual activity was decreased among patients identifying as White/Non-Hispanic (OR = 0.39, p = 0.007, 95% CI = [0.20,0.78]). CONCLUSION: Child neurologists counsel PWEGC on SRH less frequently than recommended by the AAN based on documentation.

Co-production of online educational resources for adolescent and young adult females with epilepsy.

OBJECTIVE: To develop online patient education materials about epilepsy for adolescent and young adult females with epilepsy through co-production in partnership with patients, parents or caregivers, and multi-disciplinary healthcare providers who care for this population. METHODS: We recruited participants from Western/Central Pennsylvania, comprised of females with epilepsy ages 18-26 or parents of children with epilepsy ages 12-26. Healthcare providers who participated in the study were recruited nationally from disciplines of pediatric epilepsy, adult epilepsy, women's neurology, and adolescent medicine. We held three series of meetings to create the online materials from July to August 2021. RESULTS: Five adolescent and young adult females with epilepsy (ages 18-26, median age 22) and two parents of children with epilepsy were recruited and participated in meetings. The physician group was comprised of two adolescent medicine physicians, one adult neurologist with a specialization in women's neurology, one adult epileptologist, and one pediatric epileptologist. All participants were female. Several sets of meetings were held, which involved the creation of an empathy map to evaluate the needs and desires of our participants, topic list development, and specific content and formatting recommendations. After these meetings, content was created for the online materials and published on the Center for Young Women's Health (CYWH) website. CONCLUSION: Our team utilized co-production with a diverse group of partners to create educational materials that met the interests of adolescent and young adult females with epilepsy. This is a structured and reproducible methodology that could inform future educational intervention development in epilepsy.

Preventive Approaches in Women's Neurology: Prepartum, Pregnancy, and Postpartum.

Women's neurology is the subspecialty within neurology concerned with the distinct healthcare needs of women. In this article, we review current literature and expert management strategies regarding disease-specific neurologic concerns of women, with an emphasis on issues related to contraception, pregnancy, and lactation. Health conditions that we discuss in this article include epilepsy, headache, stroke, multiple sclerosis, and Chiari I malformation. Current findings on neurologic disease in women suggest that many women with neurologic disease can safely manage their disease during pregnancy and have healthy children, though pregnancy planning is important in many conditions to mitigate risks and effective contraceptive management is important when pregnancy prevention is desired.

Preferences and experiences of women with epilepsy regarding sexual and reproductive healthcare provision.

RATIONALE: Women with epilepsy (WWE) have unique disease-specific considerations regarding their sexual and reproductive health (SRH), which impact decision-making around pregnancy and contraception. Understanding their perspectives, preferences, and experiences regarding SRH care contributes to optimizing patient-centered clinical practice. METHODS: We conducted individual semi-structured interviews with WWE aged 18-45 years, exploring their SRH care experiences and preferences. We audio-recorded and transcribed all interviews. Two coders used both inductive and deductive strategies to perform thematic analysis and identify key themes and representative quotes. RESULTS: Twenty WWE completed interviews (median age 23 years; range 18-43 years). Key themes included: 1) SRH counseling from neurologists often did not occur, was limited in scope, or contained misinformation, especially during adolescence and early adulthood. In particular, participants felt that they received poor counseling about contraception, fertility, folic acid, and teratogenic medications, which impacted their reproductive decision-making. 2) WWE report fragmented care between their neurologist and other SRH providers. 3) WWE prefer that their neurologists initiate routine comprehensive discussions about SRH. 4) Conversations about SRH should begin in adolescence and include private confidential discussions between neurologists and WWE. 5) Successful SRH conversations between neurologists and WWE involve detailed information, reassurance, and support for the patient's reproductive goals. CONCLUSION: WWE desire comprehensive, coordinated counseling and care regarding SRH and epilepsy, and often experience suboptimal SRH care. Better understanding of the SRH needs, preferences, and experiences of WWE will help inform interventions to optimize patient-centered SRH counseling and care by healthcare professionals, especially during adolescence.

Pediatric Subspecialists' Practices and Attitudes Regarding Sexual and Reproductive Healthcare for Adolescent and Young Adult Women Prescribed Teratogenic Medications.

OBJECTIVE: To evaluate pediatric subspecialists' practices and attitudes regarding sexual and reproductive healthcare for adolescent and young adult women for whom they prescribe teratogens. STUDY DESIGN: We surveyed pediatric subspecialists at 1 tertiary care pediatric hospital. Items assessed attitudes and practices related to sexual and reproductive healthcare for adolescent and young adult women prescribed teratogens, and barriers and facilitators to sexual and reproductive healthcare provision. We used descriptive statistics, χ2 tests, and logistic regression to analyze results. RESULTS: There were 200 subspecialists from 17 subspecialties who completed the survey; 77% reported prescribing teratogens to adolescent and young adult women and 18% reported caring for a patient who became pregnant while taking a teratogen. Overall, 99% indicated that it is important to address sexual and reproductive healthcare. Respondents endorsed confidence in sexual and reproductive healthcare skills, including contraceptive counseling (71%), although 29% never or rarely discuss sexual and reproductive healthcare, and one-third never speak privately to this population. Of providers who discuss sexual and reproductive healthcare, 26% never assess reproductive intentions and 36% do so less often than annually. Nearly one-half never or rarely ask about sexual activity, and 68% never or rarely assess contraceptive knowledge. Barriers to sexual and reproductive healthcare provision included available time (80%) and the presence of family or partners at clinic visits (61%). Facilitators included a quick referral process to sexual and reproductive healthcare providers (92%) and access to lists of local sexual and reproductive healthcare providers (90%). CONCLUSIONS: Pediatric subspecialists from a single institution report suboptimal sexual and reproductive healthcare provision for adolescent and young adult women prescribed teratogens. Identified barriers and facilitators may guide intervention development to improve sexual and reproductive healthcare for this population.

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.

Sexual and reproductive health concerns of women with epilepsy beginning in adolescence and young adulthood.

BACKGROUND: Women with epilepsy (WWE) have potentially unique concerns regarding their sexual and reproductive health (SRH). Prior studies of WWE have focused narrowly on pregnancy and preconception experiences, and have not addressed concerns of nulliparous adolescent and young adult women not actively seeking pregnancy. METHODS: We conducted individual semi-structured interviews with WWE 18-45 years of age. We sampled to maximize diversity of age and parity, and intentionally included many adolescent and young adult nulliparous women not actively planning pregnancy. Interviews broadly addressed participants' SRH concerns and experiences. Interviews were audio-recorded and transcribed. Two coders performed qualitative analysis using thematic analysis with deductive and inductive approaches. RESULTS: Twenty WWE (median age 23 years, range 18-43 years) completed interviews. Twelve were nulliparous, six had children, one had a history of miscarriage only, and two were currently pregnant. WWE's narratives revealed significant concerns about family planning and reproductive health in the context of epilepsy, including: 1) seizures endangering pregnancies and children 2) teratogenic effects of antiseizure medication, 3) heritability of epilepsy, 4) antiseizure medication and epilepsy impacting fertility, and 5) interactions between antiseizure medication and contraception. CONCLUSION: WWE, including nulliparous adolescent and young adult women who are not actively planning pregnancy, have significant concerns about how their epilepsy interacts with SRH. SRH counseling for WWE should begin during adolescence and be incorporated into the transition process from pediatric to adult healthcare. Insights from WWE may aid in the creation of relevant patient-facing educational resources as well as provider-facing training and tools to meaningfully support the reproductive decision-making of WWE throughout their childbearing years.

Sexual and reproductive healthcare for adolescent and young adult women with epilepsy: A qualitative study of pediatric neurologists and epileptologists.

OBJECTIVE: The objective of this study was to explore the attitudes and practices of pediatric neurologists and epileptologists regarding sexual and reproductive healthcare for adolescent and young adult women with epilepsy (WWE). BACKGROUND: Adolescent and young adult WWE have unique sexual and reproductive healthcare needs, including counseling on teratogenesis, folic acid, and interactions between contraception and antiseizure medications. There are no prior studies regarding sexual and reproductive healthcare practices of pediatric neurologists or epileptologists. DESIGN/METHODS: Individual semi-structured interviews were conducted with pediatric neurologists and epileptologists regarding their attitudes, practices, and experiences with sexual and reproductive healthcare for adolescent and young adult WWE. Interviews were audio-recorded and transcribed verbatim. Qualitative analysis was conducted using a thematic analysis approach. RESULTS: Six child neurologists and 10 epileptologists (44% male) participated. Major themes included the following: (1) Sexual and reproductive healthcare is important for adolescent WWE, and neurologists have a key role in providing this care. (2) Sexual and reproductive healthcare should be comanaged with a primary care provider or women's health provider although neurologists have significant concerns regarding comanagement. (3) There is wide variability in sexual and reproductive healthcare practice among pediatric neurologists and epileptologists. Important subthemes included parent education and differences in sexual and reproductive healthcare practices for women with intellectual disabilities. (4) Many systemic and interpersonal barriers exist to delivering sexual and reproductive healthcare to adolescent and young adult WWE. Important barriers included limited time; provider, patient, or family discomfort; and lack of necessary knowledge or expertise. (5) Providers desire standardization of sexual and reproductive healthcare for adolescent WWE along with patient and provider education. CONCLUSION: This is the first study to assess attitudes and practices of pediatric neurologists and epileptologists regarding sexual and reproductive healthcare for adolescent and young adult WWE. Our findings suggest that there is a need for development of improved systems for sexual and reproductive healthcare delivery and comanagement for adolescent and young adult WWE. Providers identified many barriers and facilitators that might serve as the basis for interventions to improve care.

Primary Care Providers' Perspectives on Prescribing Antidepressant Medication to Latino Immigrant Patients: A Preliminary Study.

Latinos in the United States are less likely to take antidepressants than non-Latino whites, and more likely to prefer depression treatment in primary care. This preliminary study comprised focus groups (2) with primary care providers (12) serving uninsured immigrant Latinos regarding their experiences prescribing and counseling patients about antidepressants. Barriers and challenges included health literacy, language barriers, and illiteracy; perceived stigma; patients' concerns about addiction, polypharmacy, and adverse effects; time constraints of office visits; and difficulty discussing comorbid posttraumatic stress disorder. Messages providers try to share with patients included allowing time for medications to work, taking medications daily as prescribed, mechanisms of action, weighing risks versus benefits, and flexible options for treatment. Providers' recommendations for improving this process included better low-literacy, culturally appropriate written materials with pictures or videos discussing depression. More research is needed to understand patients' and providers' needs in optimizing counseling about antidepressants, particularly regarding underserved and at-risk US populations.

Treatment of depression and PTSD in primary care clinics serving uninsured low-income mostly Latina/o immigrants: A naturalistic prospective evaluation.

OBJECTIVES: Uninsured immigrants to the United States are psychologically vulnerable due to limited access to mental health services. Latina/o immigrants from Central and South America are further at risk due to high levels of trauma exposure, both in their country of origin and their adopted country. Effective behavioral interventions in primary care are needed to address this services gap for common trauma-related mental disorders, including depression and posttraumatic stress disorder (PTSD). A naturalistic prospective study compared depression and PTSD outcomes for uninsured primary care patients, mostly Latina/o immigrants, in clinics with distinct models for integrating behavioral health services. One clinic had a collaborative care program, that is, a multicomponent, system-level intervention with the goals of facilitating increased screening, improving diagnostic accuracy, increasing uptake of evidence-based treatment, and utilizing measurement-based treatment to target. The other had colocated services, with an on-site therapist. METHOD: One hundred thirty-eight patients with presumptive depression were interviewed at baseline. Follow-up data were collected 8 months later. Care received between the two assessments was ascertained by chart review. RESULTS: There was a significant decrease in depression symptoms regardless of clinic. Factors associated with improved depression outcomes included absence of comorbid PTSD and lack of additional trauma exposures. Although there was overall improvement in PTSD, there was significantly more improvement in the collaborative care clinic. CONCLUSIONS: Results suggest that both models were effective for depression and PTSD; however, the collaborative care model had added benefits for those patients with PTSD. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Knowledge and Preferences Regarding Antidepressant Medication Among Depressed Latino Patients in Primary Care.

US Latinos are less likely to utilize mental health services than non-Latino whites and to take antidepressant medications. This mixed-method study followed a subset (N = 28) of a research sample of depressed Latino immigrant primary care patients, who took depression medication, with a telephone interview to study their knowledge about and experiences with antidepressant medications. Most (82%) reported taking medication for 2 months or more, and 75% reported feeling better, whereas more than half reported side effects. Most (61%) agreed that antidepressants are generally safe and helpful in treating depression (68%); however, many believed they could be addictive (39%). Fifty percent of patients who discontinued their medication did not inform their providers. Twelve of the 28 patients also participated in focus groups about interactions with providers and made suggestions for conveying information about antidepressants. Patients suggested videos as a format to disseminate medication information because they do not require written comprehension. Other patient recommendations are presented.

Communication and counseling preferences of women who chose abortion during adolescence: a qualitative study.

PURPOSE: As part of a larger study about pregnancy options counseling with adolescents, we interviewed women in the U.S. who chose abortion during adolescence about preferences and experiences regarding communication from healthcare professionals during abortion care. METHODS: We conducted individual semi-structured interviews with women ages 18-35 years old who were pregnant before age 20 years old and chose abortion. We recruited participants through social media, a research registry, and flyers in healthcare facilities. We recorded and transcribed interviews. Two investigators coded interview transcripts using thematic analysis. RESULTS: We conducted interviews with 17 U.S. women (median age 32 years old, range 20-35 years old) from 11/2020-4/2021. The median age at time of abortion was 18 years old (range 14-19 years). The sample was 58% (n=10) Caucasian and 65% (n=11) heterosexual. Themes included: 1) Participants perceived options counseling before abortion as important and necessary, but did not always feel they personally needed it. 2) Participants reported that clinicians including nurses, physicians, and other staff sometimes had poor bedside manner, which was not aligned with their perceived need for gentleness due to their adolescence. 3) Participants valued non-judgmental communication including normalization of abortion care. 4) Participants desired privacy and confidentiality throughout their clinic appointment, but clinic logistics led to concerns about limited privacy. 5) Participants appreciated medically accurate information about abortion in plain language balancing safety and risk information for reducing fear before the procedure. CONCLUSION: Responses suggested specific best practices that healthcare providers can adopt to improve care for youth considering abortion.

Provider Educational Needs and Preferences Regarding Transition from Pediatric to Adult Care in a Pediatric Health System.

INTRODUCTION: There is limited evidence on educational needs and preferences of pediatric health care professionals regarding transition from pediatric to adult health care. METHODS: We distributed an anonymous online survey to physicians and advanced practice providers at a large, free-standing children's hospital and associated primary care network to assess attitudes, practices, and educational preferences about transition. We analyzed data with descriptive statistics, chi-square, and logistic regression. RESULTS: A total of 178 providers responded (20% response rate) across 31 specialties (66% attending physicians, 19% fellows, and 15% advanced practice providers). Less than half (43%) were comfortable in their knowledge of transition, with fellows reporting significantly lower comfort than attendings ( P < .05). In total, 47% reported annually discussing transition with their patients (fellows: 17% vs. attendings: 50%, P < .05). Educational topics of greatest interest included legal (71%) and financial concerns (69%), whereas preferred educational formats included Grand Rounds/lectures (68%) and webinars (63%). Facilitators to transition included lists of local adult providers for transition (89%), parent/family educational resources (88%), and a medical summary template in the electronic health record (85%). DISCUSSION: Major gaps exist in attitudes and practices related to transition. Identified educational strategies may serve as targets to improve the transition process through educational interventions.

Health Care and Adoption Service Experiences of People Who Placed Children for Adoption During Adolescence: A Qualitative Study.

STUDY OBJECTIVE: To understand the perspectives of people who placed children for adoption during adolescence DESIGN: We conducted qualitative interviews with adults who placed children for adoption during adolescence. We recruited participants through social media and two adoption-related organizations. We audio-recorded and transcribed interviews. Using thematic analysis, 2 investigators coded the transcripts and identified themes. SETTING: Telephone interviews PARTICIPANTS: Adults ages 18-35 years old who placed children for adoption before they were 20 years old INTERVENTIONS: Semi-structured telephone interviews MAIN OUTCOME MEASURES: Qualitative data RESULTS: We conducted interviews with 18 individuals (median age of 32 years; range 21-35 years). The median age at pregnancy was 18 years (range 13-19 years). Seventeen participants identified as female and one as nonbinary. Themes included the following: (1) Negative experiences with counseling included limited empowerment to make choices about pregnancy or adoption options; (2) negative experiences with counseling included limited information about practical or financial support for pregnant adolescents; (3) negative experiences with the health care system included insensitivity or lack of awareness of the adoption plan at delivery; (4) positive experiences with counseling included comprehensive unbiased options counseling and adoption counseling emphasizing birth parent choice in openness and family placement; (5) positive experiences included longitudinal emotional support during pregnancy, particularly in ways that normalized adoption placement; and (6) participants desired therapy and/or psychological support following adoption placement. CONCLUSIONS: Individuals who chose adoption after adolescent pregnancy described positive and negative encounters with health care and adoption professionals that could serve as targets to improve the overall care experience for this population.

Preferences and Experiences Regarding Pregnancy Options Counseling in Adolescence and Young Adulthood: A Qualitative Study.

PURPOSE: Perspectives of adolescents and young adults (AYAs) experiencing pregnancy options counseling (POC) are absent from the literature. This study explores AYA experiences and preferences related to POC to inform best practice guidelines. METHODS: We conducted semistructured phone interviews in 2020-2021 among US-based individuals, 18-35 years old, who experienced a pregnancy less than 20 years of age. We performed qualitative descriptive analysis of positive and negative attributes of AYA's experiences with POC. RESULTS: Fifty participants reported 59 pregnancies (16 parenting, 19 abortions, 18 adoptions, three miscarriages) between the ages of 13 and 19 years. Positive attributes of POC experienced included: (1) provider communication that was compassionate, respectful, supportive, and attentive to nonverbal cues; (2) provider neutrality; (3) discussion of all pregnancy options; (4) asking about feelings, choice, life plans, and additional supports; (5) provision of informational materials; and (6) warm handoffs/follow-up facilitation. Negative attributes of POC experienced included: (1) judgmental, impersonal, or absent communication; (2) lack of counseling on all options and/or coercive/directive counseling; (3) insufficient time and supportive resources; and (4) confidentiality concerns. We identified no differences in these perspectives across pregnancy outcomes reported. Participants generally desired counseling about all options, with rare exceptions of ambivalence. DISCUSSION: Individuals who experienced an adolescent pregnancy described similar positive and negative attributes of POC regardless of preferred pregnancy outcome. Their perspectives highlight how crucial interpersonal communication skills are for effective POC for AYA. POC training across health care specialties should emphasize confidential, compassionate, and nonjudgmental care for AYA patients.