Harrison 2023 PDF: Adolescent Sexual And Reproductive Health Counseling For Epilepsy

Epilepsy & Behavior 145 (2023) 109321 Contents lists available at ScienceDirect Epilepsy & Behavi...

Epilepsy & Behavior 145 (2023) 109321 Contents lists available at ScienceDirect Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh A retrospective textual analysis of sexual and reproductive health counseling for adolescent and young adult people with epilepsy of gestational capacity Elizabeth I Harrison a,⇑, Laura A Kirkpatrick a, Harry S Hochheiser b, Yoshimi Sogawa a, Traci M Kazmerski a,c a UPMC Children’s Hospital of Pittsburgh, 4401 Penn Avenue, Pittsburgh, PA 15224, United States b Department of Biomedical Informatics, University of Pittsburgh School of Medicine, 5607 Baum Boulevard, Pittsburgh, PA 15206, United States c Center for Innovative Research on Gender Health Equity, University of Pittsburgh, 230 McKee Place, Pittsburgh, PA 15213, United States a r t i c l e i n f o a b s t r a c t Article history: Rationale Received 9 March 2023 The American Academy of Neurology (AAN) recommends annual sexual and reproductive health (SRH) Revised 20 May 2023 counseling for all people with epilepsy of gestational capacity (PWEGC). Child neurologists report dis- Accepted 8 June 2023 cussing SRH concerns infrequently with adolescents. Limited research exists regarding documentation Available online 20 June 2023 of such counseling. Methods: We retrospectively studied clinical notes using natural language processing to investigate child Keywords: neurologists’ documentation of SRH counseling for adolescent and young adult PWEGC. We segmented Child neurology Natural language processing notes into sentences and evaluated for references to menstruation, sexual activity, contraception, folic Machine learning acid, teratogens, and pregnancy. We developed training sets in a labeling application and used machine Menstruation learning to identify additional counseling instances. We repeated this iteratively until we identified no Folic acid new relevant sentences. We validated results using external reviewers; after removing sentences review- Contraception ers 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 menstru- ation 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 asso- ciated 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. Ó 2023 Elsevier Inc. All rights reserved. 1. Introduction Adolescent and young adult PWEGC face disease-specific health risks, including adverse drug interactions between antiseizure ⇑ Corresponding author at: Department of Pediatrics, UPMC Children’s Hospital of medications and contraceptives, teratogenic and neurodevelop- Pittsburgh, 4401 Penn Avenue, Pittsburgh PA, United States. mental effects from antiseizure medications, and unintended preg- E-mail addresses: [email protected] (E. I Harrison), laura.kirkpatrick2@chp. nancy [1–4]. Prior research has suggested that child neurologists edu (L.A Kirkpatrick), [email protected] (H.S Hochheiser), [email protected] provide variable and at times suboptimal sexual and reproductive (Y. Sogawa), [email protected] (T.M Kazmerski). https://doi.org/10.1016/j.yebeh.2023.109321 1525-5050/Ó 2023 Elsevier Inc. All rights reserved. E. I Harrison, Laura A Kirkpatrick, Harry S Hochheiser et al. Epilepsy & Behavior 145 (2023) 109321 health (SRH) counseling to this population [5,6]. In a recent single- 2.3. Natural language processing methodology center retrospective chart review of 219 visits among 89 adoles- cent PWEGC over two years, discussions regarding SRH topics Initial data included 3663 clinic notes from outpatient child occurred between only 4% of the time (for sexual activity) and neurology encounters. In Python, we used spaCy and scispaCy 58% of the time (for menstruation). Further, large-scale survey libraries to clean and segment these notes into 388,019 sentences, results have established a pattern of child neurology provider dis- removing unwanted components and repetitions. We then comfort with SRH discussions during clinic visits. evaluated each sentence for references to SRH counseling across The American Academy of Neurology (AAN) has provided clear the aforementioned six categories. We developed training sets in recommendations for annual SRH counseling to all people of child- a text annotation application called Watchful, using regular bearing potential with epilepsy regardless of age. However, expressions to manually label sentences in a binary manner as rel- there continues to be limited evidence regarding how frequently evant or irrelevant to each SRH category; any sentence that indi- these guidelines are followed in practice, particularly within child cated counseling for multiple SRH categories was labeled as neurology. Given that prior research has demonstrated poor SRH relevant for all of those categories. We then built an initial classi- knowledge in adolescents with epilepsy , SRH counseling is fier for each category and trained these machine learning models of critical importance for this group. An improved understanding using the spaCy natural language processing toolkit. With of deficiencies in practice will allow for more targeted interven- each trained model, we classified unlabeled sentences, sorted the tions to improve care and may help reduce the risk of adverse predictions, and identified additional counseling instances. We reproductive health outcomes. repeated this process iteratively, continually improving each mod- Past analysis of documentation of SRH counseling for adoles- el’s performance by incorporating new relevant examples and cent PWEGC relied on manual chart review for data extraction. refining regular expressions, until no new relevant sentences were Given the time-intensive nature of manual review, this analysis identified. Finally, we recombined all labeled sentences to recon- was restricted to fewer than 100 patients over a limited time per- struct the original full text of the clinical notes for analysis. Further iod. In our study, we apply a methodology using natural lan- details regarding this methodology are described elsewhere. guage processing techniques to accelerate the process of unstructured data extraction, enabling the analysis of a large num- 2.4. Natural language processing methodology validation ber of adolescent and young adult PWEGC. Our study builds upon prior research by enriching our understanding of how providers’ We validated our methodology with two external reviewers SRH counseling behaviors may vary at different centers and pro- who manually labeled a balanced validation sample of 400 sen- vides a wider lens by including data for a larger set of patients over tences. We then compared the labels for all sentences on which a ten-year period. they agreed (n = 387) to the labels provided by our model. Cohen’s kappa values were over 0.98 for all categories (menstruation: 1, sexual activity: 1, contraception: 0.9885, folic acid: 1, teratogens: 0.9841, pregnancy: 0.9871). 2. Material and methods 2.5. Statistical analysis 2.1. Study design We evaluated aggregated labeled texts for each patient per cal- We retrospectively studied outpatient child neurology notes endar year (n = 2277 patient-years), defined as the aggregated data using natural language processing to investigate documentation from all encounters for a given patient in any one calendar year of epilepsy-specific SRH counseling. SRH categories explored (January 1 through December 31). Analyses included univariate included menstruation, sexual activity, contraception, folic acid, descriptive statistics and logistic regression regarding the fre- teratogens, and pregnancy. Additional data collected for analysis quency of counseling for each SRH category. In regression analyses, included demographics (race and ethnicity, age at time of encoun- we adjusted for age, use of antiseizure medications that have a ter) and prescriptions for teratogenic antiseizure medications. For higher risk of teratogenic effects, and race/ethnicity. We addition- the purposes of this manuscript, we use the term ‘‘teratogenic” ally evaluated the data on the patient level for any instances of to describe antiseizure medications with documentation of higher documented SRH counseling. Our primary focus was on counseling risk of major congenital malformations, including carbamazepine, given per patient-year, which most closely reflects current AAN phenobarbital, phenytoin, primidone, topiramate, and valproate and Child Neurology Foundation (CNF) recommendations that neu-. rologists should provide at least annual SRH counseling to PWEGC The University of Pittsburgh Institutional Review Board deemed [9,14]. We were concerned that more detailed evaluations at the this research exempt from review. patient or encounter level might skew our results, particularly given that some patients with refractory epilepsy are seen as fre- quently as bi-monthly in our institution and that more regular 2.2. Data follow-ups are appropriately focused on seizure control. Due to the relative racial homogeneity of our study population, reflecting Using a clinical data provisioning service, we collected data the demographics of the region where our institution is located, we from the electronic health record for child neurology encounters evaluated race/ethnicity in a binary manner: White and Non- conducted at a single academic tertiary-care children’s hospital Hispanic versus Black, Indigenous, People of Color, and/or Hispanic. located in an urban area with a large suburban and rural catchment We also evaluated teratogenic antiseizure medication use in a bin- area. We restricted data to notes filed between January 2011 and ary manner based on whether a patient had been prescribed any January 2021. The study cohort (n = 971) included all patients antiseizure medications with documentation of higher risk of assigned as female at birth, age 13–21 years at the time of service, major congenital malformations (including carbamazepine, pheno- with a diagnosis code (ICD-9 or ICD-10) consistent with epilepsy barbital, phenytoin, primidone, topiramate, and/or valproate ) (345 or G40, respectively, or R56) and a prescription for antiseizure within a given year. We conducted all statistical analyses using medication within the study period (included medications shown Python packages (NumPy and SciPy ) within a Jupyter in Fig. 1). Notebook. 2 E. I Harrison, Laura A Kirkpatrick, Harry S Hochheiser et al. Epilepsy & Behavior 145 (2023) 109321 Fig. 1. List of antiseizure medications. A comprehensive list of 35 antiseizure medications included for the purposes of our analysis. 3. Results never received documented SRH counseling, 36.8% (n = 136) had only one visit during the study period. However, 23.0% (n = 85) 3.1. Sample Characteristics of these patients had four or more visits during the study period. The median age within the group of patients who never received Our final sample consisted of 3663 encounters with 971 PWEGC documented SRH counseling was 15 years, whereas the median meeting eligibility criteria during the study period. Most of these age within the group of patients who did was 16 years. However, patients were White (86%), were not Hispanic or Latino (95%), were as comparisons between those who never received counseling not prescribed teratogenic antiseizure medications during the and those who received counseling on any SRH topic at least once study period (63%), were prescribed a mean of 1–2 maintenance failed to reveal significant differences in racial/ethnic background antiseizure medications annually (71%), and typically had only or prescription patterns, the remainder of our results reflect analy- one outpatient child neurology visit per year (55%). Detailed ses completed on all individuals from both groups combined. Out patient characteristics are displayed in Table 1. of 2277 patient-years, 49.1% had no mention of SRH counseling (n = 1117). Documentation was present regarding menstruation in 26.7% of patient-years (n = 609), folic acid in 25.0% of patient- 3.2. Prevalence of SRH counseling years (n = 569), contraception in 21.9% of patient-years (n = 499), pregnancy in 3.5% of patient-years (n = 80), teratogens in 3.0% of During the 10-year study period, 38.0% (n = 369) of 971 PWEGC patient-years (n = 69), and sexual activity in 1.8% of patient- never had SRH counseling documented. Of the 369 PWEGC who years (n = 42). 3.3. Factors associated with increased SRH counseling Table 1 Characteristics of PWEGC included in Study. Patients who were prescribed a teratogenic antiseizure medica- Patient Characteristics tion in any given year were more likely to have counseling regard- Total Patients N = 971 ing menstruation and contraception documented at one of their Race N (%) visits (OR = 1.27, p = 0.020, 95% CI = [1.04,1.54]; OR = 1.27, White 832 (86) p = 0.027, 95% CI = [1.03,1.58]). Patients identifying as White and Black 117 (12) Non-Hispanic were less likely to have discussions regarding sexual American Indian 2 (