When chronicity meets cyclicity: The cultivation of embodied knowledge and selfhood by cis-gender women with cystic fibrosis.

This article offers the case of cystic fibrosis (CF), a multi-system disease, to illustrate how individuals with chronic illness cultivate and apply embodied knowledge to optimize their well-being. We identified three interrelated processes that occur when disease chronicity and menstrual cyclicity meet: 1) knowledge production with a period-tracking app; 2) application of embodied knowledge to manage life with menstrual-related CF symptoms; 3) cultivation of the body-self as a menstruating woman with CF. These dynamic processes capture how cis-gender women with CF attune to their bodies, navigate their illness, and situate themselves within their lifeworlds. Genetic conditions like CF are apt for studying these processes because adults have managed their disease for decades, with longitudinal experience that often exceeds that of their clinicians. Our evidence elucidates the co-constitutive nature of chronic disease, gendered subjectivity, and biological processes in flux. We explored the menstrual cyclicity of chronic disease symptoms by having 72 participants track their CF symptoms across 4 menstrual cycles on a customized period-tracking app. We performed semi-structured interviews with 20 participants to understand how they interpreted these cyclical CF symptoms. We learned that digital tracking attuned participants to monthly fluctuations in CF symptoms. They applied this knowledge to manage their lives and shape their sense of self. We argue that women with CF produce distinct embodied knowledge during their reproductive years, shaping their illness experience, disease management, overall health, quality of life, and selfhood. The dynamics we describe may reflect broader patterns by which women with other chronic illnesses experience their bodies and understand themselves in the world.

Abortion Provision and Delays to Care in a Clinic Network in Washington State After Dobbs.

Importance: The Supreme Court decision Dobbs v Jackson Women's Health Organization (Dobbs) overturned federal protections to abortion care and altered the reproductive health care landscape. Thus far, aggregated state-level data reveal increases in the number of abortions in states where abortion is still legal, but there is limited information on delays to care and changes in the characteristics of people accessing abortion in these states after Dobbs. Objective: To examine changes in abortion provision and delays to care after Dobbs. Design, Setting, and Participants: Retrospective cohort study of all abortions performed at an independent, high-volume reproductive health care clinic network in Washington state from January 1, 2017, to July 31, 2023. Using an interrupted time series, the study assessed changes in abortion care after Dobbs. Exposure: Abortion care obtained after (June 24, 2022, to July 31, 2023) vs before (January 1, 2017, to June 23, 2022) Dobbs. Main Outcome and Measure: Primary outcomes included weekly number of abortions and out-of-state patients and weekly average of gestational duration (days) and time to appointment (days). Results: Among the 18 379 abortions during the study period, most were procedural (13 192 abortions [72%]) and funded by public insurance (11 412 abortions [62%]). The mean (SD) age of individuals receiving abortion care was 28.5 (6.44) years. Following Dobbs, the number of procedural abortions per week increased by 6.35 (95% CI, 2.83-9.86), but then trended back toward pre-Dobbs levels. The number of out-of-state patients per week increased by 2 (95% CI, 1.1-3.6) and trends remained stable. The average gestational duration per week increased by 6.9 (95% CI, 3.6-10.2) days following Dobbs, primarily due to increased gestations of procedural abortions. The average gestational duration among out-of-state patients did not change following Dobbs, but it did increase by 6 days for in-state patients (5.9; 95% CI, 3.2-8.6 days). There were no significant changes in time to appointment. Conclusions and Relevance: These findings provide a detailed picture of changes in abortion provision and delays to care after Dobbs in a state bordering a total ban state. In this study, more people traveled from out of state to receive care and in-state patients sought care a week later in gestation. These findings can inform interventions and policies to improve access for all seeking abortion care.

Telehealth Medication Abortion in Primary Care: A Comparison to Usual in-Clinic Care.

INTRODUCTION: Providing abortion in primary care expands access and alleviates delays. The 2020 COVID-19 public health emergency (PHE) led to the expansion of telehealth, including medication abortion (MAB). This study evaluates the accessibility of novel telehealth MAB (teleMAB) initiated during the PHE, with the lifting of mifepristone restrictions, compared with traditional in-clinic MAB offered before the PHE at a Massachusetts safety-net primary care organization. METHODS: We conducted a retrospective electronic medical record review of 267 MABs. We describe sociodemographic, care access, and complete abortion characteristics and compare differences between teleMAB and in-clinic MABs using Chi-squared test, fisher's exact test, independent t test, and Wilcoxon rank sum. We conducted logistic regression to examine differences in time to care (6 days or less vs 7 days or more). RESULTS: 184 MABs were eligible for analysis (137 in-clinic, 47 teleMAB). Patients were not significantly more likely to receive teleMAB versus in-clinic MAB based on race, ethnicity, language, or payment. Completed abortion did not significantly differ between groups (P = .187). Patients received care more quickly when accessing teleMAB compared with usual in-clinic MAB (median 3 days, range 0 to 20 vs median 6 days, range 0 to 32; P < . 001). TeleMAB patients had 2.29 times the odds of having their abortion appointment within 6 days compared with in-clinic (95% CI: 1.13, 4.86). CONCLUSION: TeleMAB in primary care is as effective, timelier, and potentially more accessible than in-clinic MAB when in-person mifepristone regulations were enforced. TeleMAB is feasible and can promote patient-centered and timely access to abortion care.

Primary Care's Role in Prescribing Mail-Order Mifepristone.

This Viewpoint discusses the controversy over mail-order mifepristone prescribed by primary care clinicians for first-trimester abortion as it relates to the history of initial approval, the Supreme Court case Alliance for Hippocratic Medicine v US Food and Drug Administration, and available clinical research.

Reproductive Planning: Long-Acting Reversible Contraceptives and Emergency Contraception.

Long-acting reversible contraceptives (LARCs) include progestin and copper intrauterine devices (IUDs) and progestin subdermal implants. LARCs may be the preferred for individuals who want a method that is highly effective and can last for several years, or for whom estrogen is contraindicated. LARCs should be offered using a shared decision-making approach, keeping in mind that historically these methods have been used coercively to control the reproductive choices of marginalized or disabled people. To ensure safe prescribing and reduce barriers to receiving LARCs, family physicians should be familiar with two evidence-based national contraceptive guidelines: the U.S. Medical Eligibility Criteria for Contraceptive Use (U.S. MEC) and the U.S. Selected Practice Recommendations for Contraceptive Use (U.S. SPR). Information about insertion, removal, potential complications, and expected adverse effects should be included when counseling patients about LARC options. Both types of LARC IUDs can safely be used for emergency contraception if inserted within 5 days of unprotected intercourse. Several oral emergency contraception drug options also are available.

Reproductive Planning: Unintended Pregnancy.

Unintended pregnancy is seen commonly in the family medicine setting. It is defined as a pregnancy that is mistimed (occurring sooner than wanted) or unwanted (not desired at that time or any time in the future). Approximately 45% of all US pregnancies are unintended. Childbirth resulting from an undesired pregnancy has been associated with adverse maternal and child health outcomes. Clinicians should be prepared to manage unplanned pregnancies, including dating pregnancies and discussing pregnancy options. Pregnancy options counseling entails discussing the options to parent, make an adoption plan, or undergo an abortion. Because of the complexity around pregnancy intentions, a framework that places patients at the center of their reproductive decisions and engages them in collaborative decision-making during options counseling is paramount. Patients commonly seek abortion, which is considered essential health care. Because of the current legal climate surrounding abortion in many states, patients may opt to use abortion drugs without licensed clinician oversight, called self-managed medication abortion, which has been shown to be safe and effective. No states require clinicians to report known or suspected self-managed medication abortion.

Reproductive Planning: Contraceptive Counseling and Nonhormonal Methods.

More than 65% of US women ages 15 to 49 years use contraception every year, many of whom seek care with family medicine. Family physicians are well equipped to provide comprehensive contraceptive counseling to patients in the primary care setting. When discussing options and providing education to patients, clinicians should consider patient preferences, patient autonomy, and adverse effect concerns, and should use a patient-centered approach that upholds the principles of reproductive justice. Nonhormonal methods of contraception include barrier methods and spermicides, fertility awareness-based methods, and (in postpartum individuals) lactational amenorrhea. With barrier methods, spermicides, and fertility awareness-based methods, 13 to 29 out of 100 women may become pregnant. Permanent forms of contraception include female and male sterilization procedures, which are some of the most effective (more than 99% effective) and most commonly used methods in the United States.

Reproductive Planning: Short-Acting Reversible Contraceptives.

Short-acting reversible contraceptives (SARCs) are prescribed routinely by primary care clinicians. SARCs are among the most commonly prescribed contraceptive methods and include combined hormonal oral contraceptive pills, the combined hormonal transdermal patch, the combined hormonal vaginal ring, progestin-only pills, and the 3-month depot medroxyprogesterone acetate injection. To ensure safe prescribing and reduce barriers to receiving SARC methods, family physicians should be familiar with two evidence-based national contraceptive guidelines, the U.S. Medical Eligibility Criteria for Contraceptive Use (U.S. MEC) and the U.S. Selected Practice Recommendations for Contraceptive Use (U.S. SPR). SARCs have benefits in addition to pregnancy prevention; as such, these methods may be chosen for reasons other than contraception.

Telemedicine Abortion in Primary Care: An Exploration of Patient Experiences.

PURPOSE: The purpose of the study was to explore patients' experiences and perspectives obtaining telemedicine medication abortion (TeleMAB) through their primary care health system. METHODS: We conducted in-depth telephone interviews with 14 English-, Spanish-, and/or Portuguese-speaking patients who received a TeleMAB between July 2020 and December 2021, within a large primary care safety-net community health system in Massachusetts. We created and piloted a semistructured interview guide informed by patient-clinician communication frameworks and prior studies on patient experiences with TeleMAB. We analyzed data using reflexive thematic analysis and summarized main themes. RESULTS: Overall, participants found TeleMAB services in their primary care health system acceptable, positive, and easy. Participants discussed how TeleMAB supported their ability to exercise control, autonomy, and flexibility, and decreased barriers experienced with in-clinic care. Many participants perceived their primary care health system as the place to go for any pregnancy-related health care need, including abortion. They valued receiving abortion care from their established health care team within the context of ongoing social and medical concerns. CONCLUSIONS: Patients find TeleMAB from their primary care health system acceptable and beneficial. Primary care settings can integrate TeleMAB services to decrease care silos, normalize abortion as a part of comprehensive primary care, and improve access through remote care offerings. TeleMAB supports patients' access and autonomy, with the potential to benefit many people of reproductive age.

Telehealth vs In-Clinic Medication Abortion Services.

This cross-sectional study compares differences in patient characteristics between those using telehealth vs in-clinic services for medication abortion care.

Demand for medication abortion among public university students in Washington.

Provision of medication abortion in student health centers is safe and effective, but no public universities in Washington state provide such services. We estimate demand for medication abortion and describe barriers to care among students at four-year public universities in Washington. Using publicly available data, we estimated that students at the 11 Washington public universities obtained between 549 and 932 medication abortions annually. Students must travel an average of 16 miles (range:1-78) or 73 minutes via public transit (range:22-284) round trip to the nearest abortion-providing facility. Average wait time for the first available appointment was 10 days (range:4-14), and average cost was $711. Public universities can play an integral role in expanding abortion access post-Dobbs by providing medication abortion, effectively reducing barriers to care for students. The state legislature can pass legislation requiring universities to provide medication abortion, similar to what other states also protective of abortion rights have done.

Web-Based Survey Piloting Process as a Model for Developing and Testing Past Contraceptive Use and Pregnancy History: Cystic Fibrosis Case Study.

BACKGROUND: Individuals with complex, chronic diseases are now living longer, making reproductive health an important topic to address in the health care setting. Self-respondent surveys are a feasible way to collect past contraceptive use and pregnancy history to assess contraceptive safety and effectiveness. Because sensitive topics, such as contraception and pregnancy outcomes, can vary across social groups or cultures, piloting questions and evaluating survey administration procedures in the target population are necessary for precise and reliable responses before wide distribution. OBJECTIVE: This study aimed to develop a precise and reliable survey instrument and related procedures among individuals with cystic fibrosis regarding contraceptive use and obstetrical history. METHODS: We piloted and tested web-based questions related to contraceptive use and pregnancy history among 50 participants with and those without cystic fibrosis aged 18 to 45 years using a 3-tier process. Findings from each tier informed changes to the questionnaire before testing in the subsequent tier. Tier 1 used cognitive pretesting to assess question understanding and the need for memory prompts. In tier 2, we used test-retest self- and interviewer-administered approaches to assess question reliability, evaluate response missingness, and determine confidence between 2 types of survey administration approaches. In tier 3, we tested the questionnaire for clarity, time to complete, and whether additional prompts were necessary. RESULTS: In tier 1, respondents suggested improvements to the web-based survey questions and to the written and visual prompts for better recall regarding past contraceptive use. In tier 2, the test-retest reliability between self- and interviewer-administrative procedures of "ever use" contraceptive method questions was similar, with percent absolute agreement ranging between 84% and 100%. When the survey was self-administered, the percentage of missing responses was higher and respondent confidence about month and year when contraceptive methods were used was lower. Most respondents reported that they preferred the self-administered survey because it was more convenient and faster to complete. CONCLUSIONS: Our 3-tier process to pilot web-based survey questions related to contraceptive and obstetrical history in our complex disease population helped us tailor content and format questions before wide dissemination to our target population. Results from this pilot study informed the subsequent larger study design to include a 10% respondent test-retest self- and interviewer-administered quality control component to better inform imputation procedures of missing data.

Patient Perspectives Regarding Clinician Communication During Telemedicine Compared With In-Clinic Abortion.

OBJECTIVE: To explore patient perspectives regarding patient-clinician communication during telemedicine medication abortion compared with traditional, facility based, in-clinic visits. METHODS: We conducted semi-structured interviews with participants who received either live, face-to-face telemedicine or in-clinic medication abortion from a large, reproductive health care facility in Washington State. Using Miller's conceptual framework for patient-doctor communication in telemedicine settings, we developed questions exploring participants' experiences of the medication abortion consultation, including the clinician's verbal and nonverbal interpersonal approach and communication of relevant medical information, and the setting where care was received. We used inductive-deductive constant comparative analysis to identify major themes. We summarize patient perspectives using patient-clinician communication terms outlined in Dennis' quality abortion care indicator list. RESULTS: Thirty participants completed interviews (aged 20-38 years), 20 of whom had medication abortion by telemedicine and 10 who received in-clinic services. Participants who received telemedicine abortion services reported high-quality patient-clinician communication, which came from their freedom to choose their consultation location, and reported feeling more relaxed during clinical encounters. In contrast, most in-clinic participants portrayed their consultations as lengthy, chaotic, and lacking comfort. In all other domains, both telemedicine and in-clinic participants reported similar levels of interpersonal connection to their clinicians. Both groups appreciated medical information about how to take the abortion pills and relied heavily on clinic-based printed materials and independent online resources to answer questions during the at-home termination process. Both telemedicine and in-clinic participant groups were highly satisfied with their care. CONCLUSION: Patient-centered communication skills used by clinicians during facility based, in-clinic care translated well to the telemedicine setting. However, we found that patients who received medication abortion through telemedicine favorably ranked their patient-clinician communication overall as compared with those in traditional, in-clinic settings. In this way, telemedicine abortion appears to be a beneficial patient-centered approach to this critical reproductive health service.

Advance provision of medication for induced abortion: A qualitative study of patient perspectives.

OBJECTIVES: To examine potential users' perspectives regarding the provision of abortion medications for future use or "advance provision." STUDY DESIGN: In this qualitative study, we partnered with an independent reproductive health care clinic in Washington State to conduct semistructured, in-depth interviews with 22 individuals who obtained a medication abortion between August 2021 and January 2022. We asked participants their views on advance provision of abortion medications. Interviews were transcribed and deidentified. Inductive content analysis was used to identify major themes. RESULTS: Participants in our sample generally reacted positively to the idea of abortion medications for future use. Having pills in advance could improve timeliness and convenience of care and decrease the stigma associated with their use. Participants stressed the importance of adequate information regarding medication use, what to expect, and potential side effects. Most concerns about advance provision related to the safety and efficacy of medication abortion. CONCLUSIONS: This study found that individuals who recently obtained a medication abortion supported the provision of abortion medications for future use. IMPLICATIONS: Patient-centered educational materials, with adequate information for self-managing pregnancy termination, can be shared at time of prescription. Clinicians have an opportunity to offer these safe and effective medications in advance of need and increase timely access to this essential health care service. User concerns regarding abortion medications for future use should inform clinical innovation and evaluative research of service options.

Does lower use of academic affiliation by university faculty in top U.S. newspapers contribute to misinformation about abortion?

BACKGROUND: University faculty are considered trusted sources of information to disseminate accurate information to the public that abortion is a common, safe and necessary medical health care service. However, misinformation persists about abortion's alleged dangers, commonality, and medical necessity. METHODS: Systematic review of popular media articles related to abortion, gun control (an equally controversial topic), and cigarette use (a more neutral topic) published in top U.S. newspapers between January 2015 and July 2020 using bivariate analysis and logistic regression to compare disclosure of university affiliation among experts in each topic area. RESULTS: We included 41 abortion, 102 gun control, and 130 smoking articles, which consisted of 304 distinct media mentions of university-affiliated faculty. Articles with smoking and gun control faculty experts had statistically more affiliations mentioned (90%, n = 195 and 88%, n = 159, respectively) than abortion faculty experts (77%, n = 54) (p = 0.02). The probability of faculty disclosing university affiliation was similar between smoking and gun control (p = 0.73), but between smoking and abortion was significantly less (Ave Marginal Effects - 0.13, p = 0.02). CONCLUSIONS: Fewer faculty members disclose their university affiliation in top U.S. newspapers when discussing abortion. Lack of academic disclosure may paradoxically make these faculty appear less 'legitimate.' This leads to misinformation, branding abortion as a 'choice,' suggesting it is an unessential medical service. With the recent U.S. Supreme Court landmark decision, Dobbs v. Jackson Women's Health Organization, and subsequent banning of abortion in many U.S. states, faculty will probably be even less likely to disclose their university affiliation in the media than in the past.

Sexual and reproductive health experiences and care of adult women with cystic fibrosis.

BACKGROUND: As survival and health improve in people with cystic fibrosis (CF), more women with CF (wwCF) are considering their sexual and reproductive health (SRH). This study compared SRH experiences, behaviors, and care utilization of wwCF to the general population and defined CF-impacted considerations and care preferences. METHODS: We surveyed wwCF aged ≥25 years regarding SRH and compared results to the US National Survey of Family Growth (NSFG;n = 4357) and friend controls(n = 123). We used descriptive statistics and chi-squared/Fisher's exact testing and linear regression for comparisons. RESULTS: A total of 460 wwCF (mean age 36.1 years) completed the survey. WwCF were less likely to report current contraceptive use (43%vs76% NSFG, p<0.001;60% friends, p = 0.005). Nearly 25% of wwCF reported worsened CF symptoms during their menstrual cycles, 50% experienced urinary incontinence, and 80% vulvovaginal candidiasis. WwCF were significantly less likely to be parents (46%vs62% friends, p = 0.015) and to have experienced pregnancy (37%vs78% NSFG, p<0.001;58% friends, p = 0.002). More wwCF required medical assistance to conceive (29%vs12% NSFG, p<0.001 and 5% friends, p<0.001). Eighty-four percent of wwCF view their CF doctor as their main physician and 41% report no primary care provider (vs19% friends; p<0.001). WwCF report suboptimal rates of contraceptive and preconception counseling/care and are less likely to have received HPV vaccination (42%vs55%friends, p = 0.02). Despite desiring SRH conversations with their CF team, <50% report discussing SRH topics. CONCLUSION: WwCF have significantly different SRH experiences than non-CF peers. They report suboptimal SRH care compared to their preferences highlighting an urgent need to encourage SRH counseling/care in the CF model.

Remote Delivery in Reproductive Health Care: Operation of Direct-to-Patient Telehealth Medication Abortion Services in Diverse Settings.

PURPOSE: Established models of reproductive health service delivery were disrupted by the coronavirus disease 2019 (COVID-19) pandemic. This study examines rapid innovation of remote abortion service operations across health care settings and describes the use of telehealth consultations with medications delivered directly to patients. METHODS: We conducted semi-structured interviews with 21 clinical staff from 4 practice settings: family planning clinics, online medical services, and primary care practices-independent or within multispecialty health systems. Clinicians and administrators described their telehealth abortion services. Interviews were recorded, transcribed, and analyzed. Staff roles, policies, and procedures were compared across practice settings. RESULTS: Across all practice settings, telehealth abortion services consisted of 5 operational steps: patient engagement, care consultations, payment, medication dispensing, and follow-up communication. Online services and independent primary care practices used asynchronous methods to determine eligibility and complete consultations, resulting in more efficient services (2-5 minutes), while family planning and health system clinics used synchronous video encounters requiring 10-30 minutes of clinician time. Family planning and health system primary care clinics mailed medications from clinic stock or internal pharmacies, while independent primary care practices and online services often used mail-order pharmacies. Online services offered patients asynchronous follow-up; other practice settings scheduled synchronous appointments. CONCLUSIONS: Rapid innovations implemented in response to disrupted in-person reproductive health care included remote medication abortion services with telehealth assessment/follow-up and mailed medications. Though consistent operational steps were identified across health care settings, variation allowed for adaptation of services to individual sites. Understanding remote abortion service operations may facilitate dissemination of a range of patient-centered reproductive health services.Annals "Online First" article.

Engaging Stakeholders in the Development of a Reproductive Goals Decision AID for Women with Cystic Fibrosis.

Objective: More people with cystic fibrosis (pwCF) are reaching adulthood and considering their reproductive futures. Unfortunately, many pwCF report gaps in their reproductive healthcare. We describe measures of stakeholder engagement in developing a reproductive goals decision aid for women with CF called MyVoice:CF. Methods: Stakeholders reviewed the content, design, and usability of the tool, which was informed by prior research related to CF family planning experiences and preferences as well as a conceptual understanding of reproductive decision making. We evaluated stakeholder engagement via process measures and outcomes of stakeholder involvement. We collected data via recorded stakeholder recommendations and surveys. Results: Fourteen stakeholders participated and the majority described their role on the project as "collaborator", "advisor", or "expert." Most felt their expectations for the project were met or exceeded, that they had contributed significantly, and that they received sufficient and frequent information about the process. All stakeholders provided recommen-dations and clarified aims for a CF-specific family planning tool, including its content and focus on facilitating shared decision making. Discussion: Utilizing meaningful stakeholder contributions, we developed MyVoice:CF, a novel web-based decision aid to help women with CF engage in shared decision-making regarding their reproductive goals. Practical Value: Our findings from working with stakeholders for MyVoice:CF indicate that disease-specific reproductive health resources can and should be designed with input from individuals in the relevant communities.

Comparison of Paper Diaries, Text Messages and Smartphone App to Track Bleeding and Other Symptoms for Contraceptive Studies.

OBJECTIVES: Most researchers who study the effects of hormonal contraception on menstrual bleeding rely on self-reported data via paper diaries, for which completeness and timeliness have been shown to be poor. The purpose of this exploratory study was to compare the completeness and timeliness of bleeding data collected via paper diaries, text messages or smartphone application (a.k.a "app"). METHODS: This was a sub-study of a double-blinded, placebo-controlled randomized trial comparing the effects of a non-steroidal anti-inflammatory drug, naproxen, with placebo when using a copper IUD. Participants tracked bleeding and symptoms over 112 days. Participants tracked bleeding daily using a paper diary as well as with either text messages or a smartphone app. Participants who used paper and the app were also able to record non-bleeding symptoms. RESULTS: Twenty-five participants submitted diaries. Of these participants, 10 completed both paper and app diaries, 7 completed both paper and text messages, 4 completed the paper diary only, 4 completed the app only. Text messages had the most complete data (108 days), followed by the app (96 days) and paper diaries (84 days). The lag time between a bleeding event and the date recording that event was 0.10 days for text, 1.0 days for app, and 4.73 days for paper diaries. Participants using the app reported a median of 33 other symptoms over the study period compared to 7 for the paper diaries. DISCUSSION: Our findings suggest texts demonstrated more complete and timely bleeding data than either paper diaries, or the app. Compared to paper diaries, the app delivered more complete, timely data, and also collected a large set of symptoms.