"They had the lunch lady coming up to assist": The experiences of menarche and menstrual management for adolescents with physical disabilities.

BACKGROUND: Menarche is a pivotal time in an adolescent's life but can be experienced differently by those with physical disabilities. Parents typically serve as the primary educators and support for their daughters during this time. Little is known about the parent's perspective of their daughter's experience preparing for menarche and learning to manage menses. OBJECTIVE: We sought to understand the parent's perspective of the experience of their daughter with a physical disability around menarche and their preferences for health care provider support. METHODS: Individual semi-structured interviews were conducted with 21 parents of a daughter with a physical disability ages 7-26. Interviews were coded by 2 reviewers using Grounded Theory, with disagreements resolved by consensus. RESULTS: Six themes emerged regarding the parent's perception of the experiences, including 1) variation in emotional responses to menarche, 2) parent's perception of their daughter's experience with menses and menstrual symptoms, 3) cross-section of disability and menstrual management, 4) menstrual management at school, 5) parental knowledge correlating to daughter's preparation for menarche, and 6) desires for health care provider support. CONCLUSIONS: All parents reported that their daughters faced challenges during menarche, ranging from emotional distress to dealing with the inaccessibility of hygiene products. Managing periods at schools was particularly burdensome. Parents who were better educated about what to expect were better able to prepare their daughters, but had difficulties finding informed, supportive providers. Health care providers should provide both anticipatory guidance and holistic, respectful, and equitable options for the management of menstrual symptoms.

Patient satisfaction with Sexual Assault Nurse Examiner services and post-assault resource utilization at a university health center and emergency department.

Objective: Describe a model for incorporating campus-based Sexual Assault Nurse Examiner (SANE) services. Describe differences in patient satisfaction and utilization of follow-up resources between patients seeking SANE services at a university health center (UHC) compared to an emergency department (ED). Participants: Patients seeking SANE services at the UHC or ED of a large Midwestern university from January 2016-April 2018. Fifty-eight participants completed a satisfaction survey, including 28 students. Twenty-eight participants completed a follow-up survey, including 15 students. Methods: A Qualtrics survey assessed: 1) satisfaction following the SANE exam and 2) use of follow-up services 4-6 weeks later. Descriptive analyses, exact logistic regressions, and OLS regressions were calculated. Results: There were no differences in satisfaction, services received, or follow-up services accessed between patients at the UHC and ED, including between students. Conclusions: Campus-based SANE services meet the expectations of survivors and do not differ significantly from services at the ED.

Development and pilot test of a pregnancy decision making tool for women with physical disabilities.

OBJECTIVE: Design and pilot test a new decision making tool for women with physical disabilities (impairment of physical function due to chronic conditions) considering pregnancy. DATA SOURCES AND STUDY SETTING: Quantitative surveys and qualitative interviews were collected from participants living in the community. STUDY DESIGN: Clinical guidelines and survey and focus group data about pregnancy informational and decisional needs guided content development. The tool was pilot tested in a 12-week trial with participants with physical disabilities considering or actively planning a pregnancy. Feasibility outcomes were acceptability, implementation, and demand (collected at end of the trial); preliminary efficacy focused on decisional conflict and readiness (baseline, 6 weeks, and end of trial). DATA COLLECTION: Survey data were collected using an online form. One-on-one interviews were conducted to learn more about experience using the tool. PRINCIPAL FINDINGS: Thirty eight participants with mild, moderate, or severe physical disabilities participated. Feasibility outcomes indicated that the tool provided participants with information, guiding questions, and helped them to consider multiple aspects of the decision about pregnancy. Most participants responded positively to the new decision making tool, finding it easy to use and the information balanced. Feedback highlighted opportunity for improvement, such as more specific information, peer stories, and the limitations of a paper format. There was significant linear effect of time, with increased decisional certainty and readiness, values clarity, and decisional support (partial η2 [90% CI] = 0.310 [0.08, 0.46], 0.435 [0.19, 0.60], 0.134 [0, 0.29], 0.178 [0.01, 0.35], respectively). Decisional certainty and readiness had high observed power (96.7% and 99.3%, respectively) with lower observed power for clarity and support (60.6% and 75.1%, respectively). CONCLUSIONS: The new tool shows promise for supporting women with physical disabilities in navigating pregnancy decision making. Future development of complementary strategies to support health care providers will help improve shared decision making and patient-centered care.

Implementation of INHERET, an Online Family History and Cancer Risk Interpretation Program for Primary Care and Specialty Clinics.

BACKGROUND: Individuals at increased risk for cancer are ascertained at low rates of 1% to 12% in primary care (PC). Underserved populations experience disparities of ascertainment, but data are lacking. INHERET is an online personal and family history tool to facilitate the identification of individuals who are eligible, according to guidelines, to be counseled on germline genetic testing and risk management. PATIENTS AND METHODS: INHERET data entry uses cancer genetics clinic questionnaires and algorithms that process patient data through NCCN Clinical Practice Guidelines in Oncology and best practice guidelines. The tool was tested in silico on simulated and retrospective patients and prospectively in a pilot implementation trial. Patients in cancer genetics and in PC clinics were invited to participate via email or a card. Informed consent was completed online. RESULTS: INHERET aimed to integrate patient data by algorithms based on professional and best practice guidelines to elicit succinct, actionable recommendations that providers can use without affecting clinic workflow or encounter length. INHERET requires a 4th-grade reading level, has simple navigation, and produces data lists and pedigree graphs. Prospective implementation testing revealed understandability of 90% to 100%, ease of use of 85%, and completion rates of 85% to 100%. Physicians using INHERET reported no added time to their encounters when patients were identified for counseling. In a specialty genetics clinic, INHERET's data were input, on average, within 72 hours compared with 4 to 6 weeks through standard care, and the queue for scheduling patients decreased from 400 to fewer than 15 in <6 months. CONCLUSIONS: INHERET was found to be accessible for all education and age levels, except patients aged >70 years, who encountered more technical difficulties. INHERET aided providers in conveying high-risk status to patients and eliciting appropriate referrals, and, in a specialty clinic, it produced improved workflows and shortened queues.

Preparing for Puberty in Girls With Special Needs: A Cohort Study of Caregiver Concerns and Patient Outcomes.

STUDY OBJECTIVE: To characterize the patient population with cognitive or physical impairments that presents for anticipatory guidance of puberty, evaluate caregiver concerns with respect to puberty, and describe chosen management strategies and outcomes following menarche. DESIGN: Retrospective cohort study SETTING: Academic tertiary care women and children's hospital PARTICIPANTS: Eligible female patients with special needs up to age 26 years presenting for anticipatory guidance from 2009 to 2018 MAIN OUTCOME MEASURES: Primary outcomes included characterization of patients presenting for anticipatory guidance and their reasons for menstrual management. Secondary outcomes were satisfaction with menstrual management and bleeding patterns. RESULTS: A total of 61 patients presented for anticipatory guidance of puberty, on average 13.5 months prior to menarche. Compared to the overall adolescent population with special needs who presented for gynecologic care, patients who had autism spectrum disorder (ASD), were nonverbal, or had attention-deficit/hyperactivity disorder (ADD/ADHD) were more likely to present for a pre-menarchal visit to discuss anticipated pubertal development (P < .001, P = .009, and P = .04, respectively). More than half of families described potential behavioral changes as their main concern. The majority of post-menarchal patients (80%) desired hormonal management of menses, including 30% of patients who had placement of a levonorgestrel intrauterine device. In all, 96% of patients were satisfied with their final menstrual bleeding pattern; 50% achieved amenorrhea or light spotting. CONCLUSIONS: This study describes the important role of pre-menarchal reproductive counseling for girls with disabilities. Anticipation of puberty causes great anxiety in families and patients, especially those with ASD, ADD/ADHD, and non-verbal status. Providers should consider initiating these conversations early in pubertal development.

Satisfaction With Hormonal Treatment for Menstrual Suppression in Adolescents and Young Women With Disabilities.

PURPOSE: To characterize the population of adolescents and young women with special needs presenting for gynecologic care, describe usage patterns of hormonal suppression methods, and evaluate outcomes of menstrual management. METHODS: This retrospective cohort study included females with special needs up to age 26 years presenting for menstrual management from 2009 to 2018. Demographic, social, and medical histories were collected to investigate effects on bleeding pattern and satisfaction with menstrual management. RESULTS: Of 262 patients who presented for menstrual complaints, final methods of treatment included combined hormonal contraceptives (30.9%), oral progestins (19.8%), depot medroxyprogesterone acetate (8.0%), etonogestrel implant (1.9%), and levonorgestrel intrauterine device (16.8%). Eighty-five percent of patients were satisfied with their final bleeding pattern. Patients with amenorrhea or light regular periods were more likely to be satisfied than patients with heavy or irregular bleeding (p < .001). Satisfied patients tried an average of 1.4 methods, compared to 1.8 methods tried by the unsatisfied group (p = .042). By the end of the study, 26.0% were amenorrheic and 12.8% had only light spotting. Satisfaction rates were similar with each method, including 88.4% with use of combined hormonal contraceptives, 82.5% with oral progestins, 93.3% with depot medroxyprogesterone acetate, 100% with etonogestrel implant, and 83.9% with levonorgestrel intrauterine device. CONCLUSIONS: Amenorrhea or light regular bleeding led to satisfaction in most patients. No hormonal method was superior. When counseling families and patients who present for menstrual suppression, emphasis should be placed on goals of treatment and expectations for outcomes, as light regular periods may be as acceptable as amenorrhea.

Development of a new pregnancy informational and decisional needs survey for women with physical disabilities.

BACKGROUND: While the literature on pregnancy and disability is growing, generating important knowledge of barriers to care and health risks, there is limited literature on pregnancy decision-making and informational needs. Such knowledge is critical for the development of interventions to mitigate the challenges women with disabilities and health care providers face in making this important decision. OBJECTIVE: /Hypothesis: Develop a survey of pregnancy decisional and informational needs of women with physical disabilities. METHODS: We developed a conceptual framework that guided item writing, defined the characteristics of the target population, engaged stakeholders with disabilities to collaborate with investigators, and tested the interpretability and relevance of items, and preferred mode of responding (online vs. telephone). A total of 123 women participated in cognitive interviews (N = 13), mode testing (N = 10), or survey data collection (N = 114). RESULTS: Instructions, three screening questions, and 156 items were tested in one round of 17 cognitive interviews; 25 items were deleted, 94 were revised, and 37 items were retained without changes. The final version of the survey included six sub-sections: the experience of making a decision; information about pregnancy and disability; things affecting a decision; knowing what is important; support for making a decision; and working with health care providers. CONCLUSIONS: The overall performance of the survey supported its content validity and utility as a useful way to gather information about the pregnancy decision-making experience and informational needs of women with physical disabilities.

A Retrospective Descriptive Analysis of Sexual Assault Nurse Examiner Records From Sexual Assault Survivors at a Large University Emergency Department From 2003 to 2017.

This retrospective descriptive analysis of 837 patients seeking postassault care at an academic hospital in the United States describes characteristics of sexual assault survivors from a sociocultural context, with a specific focus on describing survivors presenting for sexual assault nurse examiner (SANE) exams and confirming existing literature on assault characteristics, such as disabilities and alcohol and/or drug use. Assaults resulting in SANE exams increased over time. Drug and/or alcohol use at the time of the assault was reported in 44.8% of cases and 20.8% of survivors reported having a disability. Understanding the demographic and sexual assault characteristics of survivors is fundamental to providing sensitive and responsive care.

Looking back while moving forward: a justice-based, intersectional approach to research on contraception and disability.

For the first time in the 21st century, we have an emerging body of research regarding contraceptive use among adult women with disabilities in the United States. We highlight key findings from population-based analyses that found higher odds of female sterilization and lower odds of long-acting reversible contraception use among women with disabilities compared to their peers without disabilities. We consider potential reasons underlying these differences, including discriminatory attitudes and policies that restrict the sexual and reproductive autonomy of people with disabilities. We advocate for a justice-based, intersectional approach to research on contraception and disability with the aim of promoting the reproductive autonomy of people with disabilities.

Cervical cancer screening with liquid cytology in women with developmental disabilities.

OBJECTIVE: To evaluate the use of liquid cytology in Pap smears in women with developmental disabilities (DD) for endocervical cell yield and abnormalities, via speculum examination or blind technique. METHODS: We used retrospective chart review of gynecological visits by women with DD from October 2002 to November 2005. Cervical cytology screening included speculum examination or blind technique. Endocervical cell yield was analyzed via Pearson's chi-square test. RESULTS: Of 240 attempted liquid cytology Pap smears, 199 (82.9%) were completed. Of these, 193 met inclusion criteria for the study, and 120 (62.2%) contained endocervical cells. The endocervical cell yield with liquid cytology/speculum was 80.0% and was 43.6% with liquid cytology/blind (p < 0.001). Two blind smears (1.0%) were abnormal; both revealed atypical squamous cells of undetermined significance (ASCUS) with subsequent negative human papillomavirus (HPV) typing. CONCLUSIONS: Cervical screening with liquid cytology in women with DD provides an overall rate of endocervical cells of approximately 44%-80% depending on the technique used. Although this is much lower than in the general population, this compares favorably with slide Pap smear in women with DD. The 44% yield of endocervical cells and the finding of abnormal Pap smears with the blind technique suggest this is a reasonable alternative for obtaining Pap smears in women with difficult pelvic examinations who otherwise would not receive cervical screening.