BACKGROUND Cystic fibrosis (CF) is a rare, life-shortening, multiorgan disease, the treatment of which has seen significant increases in the life expectancy of those with CF. Many advances in CF care are thanks to the dedicated and active participation of people with CF as research participants. Unfortunately, most CF research teams still do not fully partner with people with CF or their caregivers. OBJECTIVE The aim of this study was to determine the interest, knowledge gaps, and desired format for patient-centered outcomes research (PCOR) training in the CF community. METHODS We surveyed patients, caregivers, researchers, research staff, and diverse health care providers via list servers and social media outreach about their knowledge of, experience with, and preferences for PCOR training components. We followed the survey with 3 small-group discussion sessions with 22 participants who completed the survey to establish consensus and prioritize key learning components of a PCOR training program. We summarized results using descriptive statistics. RESULTS A total of 170 participants completed the survey (patients/caregivers: 96/170, 56.5%; researchers/health care providers: 74/170, 43.5%). Among providers, 26% (19/74) were physicians/advanced practice providers, 20% (15/74) were nurses, and 54% (40/74) were from other disciplines. Among all participants, 86.5% (147/170) expressed interest in learning about PCOR, although training topics and training format differed between the patient/caregiver and researcher/health care provider groups. Before participating in PCOR, patients/caregivers wanted to understand more about expectations of them as partners on PCOR research teams (82/96, 85%). Meanwhile, researchers/health care providers desired information on how to include outcomes important to patients/caregivers (55/74, 74%) and the quality and impact of PCOR research (52/74, 70% and 51/74, 69%, respectively). Patients/caregivers were most interested in learning about the time commitment as a PCOR team member (75/96, 78%). Researchers/health care providers wanted to receive training about how to establish trust (47/74, 64%) and maintain confidentiality (47/74, 64%) when including patient or caregiver partners on the PCOR team. During follow-up discussions, participants emphasized the importance of addressing the traditional patient/caregiver and researchers/health care provider hierarchy by teaching about transparency, appreciation, creating a common language between the groups, and providing specific training on “how” to do PCOR. CONCLUSIONS Our findings suggest CF community members are interested in PCOR. A high-quality training program would fill a current deficit in methodological research. This assessment identified the topics and formats desired and can be used to develop targeted training to enhance meaningful PCOR in CF.
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.
Family Medicine physicians are increasingly providing early pregnancy medication abortion due to availability of telehealth. Aid Access currently offers a family physician supported online abortion service where patients communicate asynchronously with providers and service staff via an online consultation questionnaire and subsequent email messaging. Evaluating the volume of back-and-forth messaging and the topics of patient concern can streamline medication abortion provision and increase quality of services.
Objective:
To analyze the amount of asynchronous messaging needed between Aid Access clinicians and support staff and patients. To determine the primary topics of patient concern when using an asynchronous abortion service.
Study Design:
Retrospective chart review, using a mixed-methods quantitative, qualitative approach with a Linear Regression analysis.
Setting or Dataset:
De-identified patient data and messages sent back and forth between Aid Access and patients in New York (NY), New Jersey (NJ), and Washington (WA).
Population Studied:
Patients who received consultations and medications (mifepristone and misoprostol) from Aid Access in NY, NJ, and WA between April and November 2020 (n=504). The patients’ ages ranged from 14-50 years, and the majority (85.1%) were less than 7 weeks gestation.
Intervention:
N/A.
Outcome Measures:
1) Message volume and topics of patient concern. 2) Correlation between message topics and total number of messages sent between patients and Aid Access.
Results:
The mean number of total messages, including 6-7 automatic emails to all patients, between Aid Access and patients was 16.41. Patients messaged primarily about three topics: delivery = timing and packaging of shipment, cost = sliding scale needs, physical process = medication use, appropriate amount of bleeding, and complete abortion confirmation. 31.5% (n=159) of patients had delivery questions, 27.2% (n=137) had cost needs, and 8.7% (n=44) had physical process concerns. After controlling for age, gestational age, and number of previous abortions, patients with delivery, cost, and physical process concerns had 15.6 more total back-and-forth messages compared to those without concerns (95% CI: 9.4-21.9, p<0.001).
Conclusions:
Patients accessing telehealth abortion services are concerned about timing of delivery, options for discounted payment, and bleeding during the process. Concerns increase the amount of time and communication needed per patient.
In Brief OBJECTIVE: To compare the efficacy of gestrinone with that of mifepristone for emergency contraception. METHODS: A randomized double-blind trial was conducted in five family-planning clinics in China. We randomly assigned 998 healthy women with regular menstrual cycles and negative urine pregnancy tests who were requesting emergency contraception up to 72 hours after unprotected coitus to receive single-dose 10 mg gestrinone (n=499) or 10 mg mifepristone (n=499). We monitored them to 7 days after the expected first day of their next menstrual period. The study was powered to detect a 5% failure rate between the two regimens. RESULTS: The treatment groups did not differ significantly; posttreatment pregnancy rates were 2.4% in the gestrinone group compared with 1.8% in the mifepristone group (P=.51). The majority of women menstruated the first day of expected menses, and groups did not differ regarding side effects. CONCLUSION: The effectiveness of 10 mg gestrinone is not significantly different from 10 mg mifepristone as an emergency contraceptive method. CLINICAL TRIAL REGISTRATION: ISRCTN Register, isrctn.org, ISRCTN87842530. LEVEL OF EVIDENCE: I The effectiveness of 10 mg gestrinone is not significantly different from 10 mg mifepristone as an emergency contraceptive method.
Objectives. To evaluate the association between distance from closest abortion facility and number of fulfilled requests through no-test telehealth medication abortion (NTMA) asynchronous service. Methods. Using deidentified 2020–2022 electronic medical record data from Aid Access users in US states where NTMA is prescribed by US-based clinicians, we describe individual user demographics and their resident county characteristics. We conducted a county-level geospatial analysis of distance to abortion facility (Myers Abortion Facility Database) on fulfilled requests using Poisson regression. Results. US-based clinicians fulfilled NTMA requests to 8411 individuals in 21 states and the District of Columbia. Each 100-mile increase in distance to an abortion facility increased per-capita NTMA by 61% (95% confidence interval [CI] = 26%, 86%). Most individuals were aged 20 to 29 years (54%), had no living children (57%), were less than 6 weeks’ gestation (62%), and lived in urban areas (65%). Almost half (49%) lived in higher socially vulnerable counties compared with 17% in less socially vulnerable counties. Conclusions. In the United States, telehealth medication abortion is a critically important service for individuals who are young, socially vulnerable, and living in counties far from abortion care facilities. Public Health Implications. With abortion now banned or highly restricted in 22 US states, telehealth abortion services are necessary to maintain essential reproductive health services. ( Am J Public Health. 2025;115(2):221–231. https://doi.org/10.2105/AJPH.2024.307892 )
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