UNASSIGNED: Access to gender-affirming medical care has life-saving effects on transgender and gender diverse (TGD) individuals. An increasing number of TGD individuals seek care which led to waiting times of years. We assessed the duration and effects of excessive waiting for gender-affirming care.
UNASSIGNED: In this mixed-methods cross-sectional population study, conducted in the Netherlands between June and August 2019, all TGD individuals with experiences with receiving/applying for gender-affirming medical care could participate. Data of participants waiting for care was primarily analyzed. Demographic characteristics and requested care (multiple-choice questions) and the effects of waiting on health were surveyed (open-ended questions). Descriptive statistics were calculated per treatment, and differences in participant characteristics between those waiting for and already in care were assessed through Chi squared tests and post-hoc testing of residuals. Open text answers were thematically analyzed.
UNASSIGNED: Of all 975 participants, 431 (44.2%) waited for gender-affirming medical care. For 10 out of 20 treatment modalities, the median waiting period was more than a year. Participants already in care were on average higher educated and less-frequently non-binary. Subjective effects of waiting were (very) negative for most treatments. Qualitative findings showed that long waiting was associated with a range of psychosocial distress, poorer health, increasing healthcare consumption, and increased inequality between TGD individuals.
UNASSIGNED: Findings confirm that TGD individuals encounter long waiting times in multiple stages of their gender-affirming medical care. Waiting affects both physical and psychosocial health. Individual resilience and resources can mitigate these experiences, which increase inequality within this already marginalized group.
UNASSIGNED: Ministry of Health, Welfare and Sport of the Netherlands and Zorgverzekeraars Nederland (Healthcare Insurers Netherlands).

BACKGROUND: Seeking and obtaining effective health care for Long COVID remains a challenge in the USA. Women have particularly been impacted, as they are both at higher risk of developing Long COVID and of facing gendered barriers to having symptoms acknowledged. Long COVID clinics, which provide multidisciplinary and coordinated care, have emerged as a potential solution. To date, however, there has been little examination of U.S. patient experiences with Long COVID clinics and how patients may or may not have come to access care at a Long COVID clinic.
METHODS: We conducted semi-structured interviews with 30 U.S. women aged 18 or older who had experienced Long COVID symptoms for at least 3 months, who had not been hospitalized for acute COVID-19, and who had seen at least one medical provider about their symptoms. Participants were asked about experiences seeking medical care for Long COVID. Long COVID clinic-related responses were analyzed using qualitative framework analysis to identify key themes in experiences with Long COVID clinics.
RESULTS: Of the 30 women, 43.3% (n = 13) had been seen at a Long COVID clinic or by a provider affiliated with a Long COVID clinic and 30.0% (n = 9) had explored or attempted to see a Long COVID clinic but had not been seen at time of interview. Participants expressed five key themes concerning their experiences with seeking care from Long COVID clinics: (1) Access to clinics remains an issue, (2) Clinics are not a one stop shop, (3) Not all clinic providers have sufficient Long COVID knowledge, (4) Clinics can offer validation and care, and (5) Treatment options are critical and urgent.
CONCLUSIONS: While the potential for Long COVID clinics is significant, findings indicate that ongoing barriers to care and challenges related to quality and coordination of care hamper that potential and contribute to distress among women seeking Long COVID care. Since Long COVID clinics are uniquely positioned and framed as being the place to go to manage complex symptoms, it is critical to patient wellbeing that they be properly resourced to provide a level of care that complies with emerging best practices.

Background: The postpartum period is a window to engage birthing people in their long-term health and facilitate connections to comprehensive care. However, postpartum systems often fail to transition high-risk patients from obstetric to primary care. Exploring patient experiences can be helpful for optimizing systems of postpartum care. Methods: This is a qualitative study of high-risk pregnant and postpartum individuals. We conducted in-depth interviews with 20 high-risk pregnant or postpartum people. Interviews explored personal experiences of postpartum care planning, coordination of care between providers, and patients\' perception of ideal care transitions. We performed thematic analysis using the Capability, Opportunity, Motivation, Behavior (COM-B) model of behavior change as a framework. COM-B allowed for a formal structure to assess participants\' ability to access postpartum care and primary care reengagement after delivery. Results: Participants universally identified difficulty accessing primary care in the postpartum period, with the most frequently reported barriers being lack of knowledge and supportive environments. Insufficient preparation, inadequate prenatal counseling, and lack of standardized care transitions were the most significant barriers to primary care reengagement. Participants who most successfully engaged in primary care had postpartum care plans, coordination between obstetric and primary care, and access to material resources. Conclusions: High-risk postpartum individuals do not receive effective counseling on the importance of primary care engagement after delivery. System-level challenges and lack of care coordination also hinder access to primary care. Future interventions should include prenatal education on the benefits of primary care follow-up, structured postpartum planning, and system-level improvements in obstetric and primary care provider communication.

UNASSIGNED: To conduct a randomized controlled trial to compare 3 implementation strategies and the impact of facilitated referrals on linkage of Federally Qualified Health Center patients to the Illinois Tobacco Quitline (ITQL).
UNASSIGNED: This study will be a hybrid type 3 implementation-effectiveness trial guided by 2 implementation science frameworks: reach, effectiveness, adoption, implementation, and maintenance and exploration preparation implementation sustainment. We will evaluate whether sending provider messages through the patient electronic health portal increases patient linkage to the ITQL. We will (1) randomly assign all eligible patients to receive 1 of 3 messages (information about quitting, advice to quit, and advice to quit or cut down), and (2) we will offer a facilitated linkage to the ITQL. For patients who opt into a facilitated referral, we will share their contact information with the ITQL, who will contact them. Four weeks after the initial message, patients who expressed interest in services but were not reached by the ITQL will be rerandomized to 1 of 2 arms, an offer to reconnect to the ITQL or an offer to engage a peer navigator who can help them reconnect to the ITQL. We will assess the implementation strategies\' reach, adoption, linkage, and sustainability with the ITQL.
UNASSIGNED: This study will provide a new cost-effective and efficient model to link low-income smokers to state tobacco quitlines. Message delivery via patient health portals has important implications for addressing other tobacco-related morbidities.

OBJECTIVE: Research points to disparities in disease burden and access to medical care in epilepsy. We studied the association between socioeconomic status (SES) and antiseizure medication (ASM) use in pregnancies with maternal epilepsy.
METHODS: We conducted a cross-sectional study consisting of 21 130 pregnancies with maternal epilepsy identified from Nordic registers during 2006-2017. SES indicators included cohabitation status, migrant background, educational attainment, and household income. Main outcomes were the proportion and patterns of ASM use from 90 days before pregnancy to birth. We applied multiple imputation to handle SES variables with 2%-4% missingness. We estimated adjusted risk ratios (aRRs) and 95% confidence intervals (CIs) using modified Poisson regression with the highest SES category as reference.
RESULTS: Mothers with the highest education and the highest income quintile used ASMs least frequently (56% and 53%, respectively). We observed increased risks of ASM discontinuation prior to or during the first trimester for low SES. The risk estimates varied depending on the SES indicator from aRR = 1.27 for low income (95% CI: 1.03-1.57) to aRR = 1.66 for low education (95% CI: 1.30-2.13). Migrant background was associated with ASM initiation after the first trimester (aRR 2.17; 95% CI 1.88-2.52). Low education was associated with the use of valproate during pregnancy in monotherapy (aRR 1.70; 95% CI 1.29-2.24) and in polytherapy (aRR 2.65; 95% CI 1.66-4.21). Low education was also associated with a 37% to 39% increased risk of switching from one ASM to another depending on the ASM used. For the other SES indicators, aRRs of switching varied from 1.16 (foreign origin; 95% CI 1.08-1.26) to 1.26 (not married or cohabiting; 95% CI 1.17-1.36).
CONCLUSIONS: Low SES was associated with riskier patterns of ASM use: discontinuation, late initiation, and switching during pregnancy. These findings may reflect unplanned pregnancies, disparities in access to preconception counseling, and suboptimal care.

UNASSIGNED: Despite its overall good performance, the Belgium healthcare system scores less well in providing equal access to healthcare compared to other European countries. This increases the risk of people worse off to receive late diagnosis and to get complications of chronic diseases.
UNASSIGNED: This study aims to achieve a deeper understanding of how people with complications of a chronic disease - diabetes type 2 - experience care in the Belgium health system through semi-structured interviews with extreme case study sampling of people with advanced diabetes, and inductive analysis.
UNASSIGNED: The results show that most respondents were diagnosed late in the course of their disease. There are variations in treatment and type of provider. People appreciate the personal and long-lasting contact with a medical doctor, while the contact with and role of paramedical providers was less recognized. Disease management has a significant impact on their financial budget and some respondents experienced barriers to obtain additional financial support.
UNASSIGNED: Non-medical costs are not reimbursed, presenting a high burden to people. Self-management is tedious and hampered by other worries that people may have, such as financial constraints and coping with important life events. To conclude this study highlighted the need to improve diabetes screening. We suggest to enhance the role of paramedical professionals, integrate a social care worker, reduce financial constraints, and increase health literacy through more patient-centered, goal-oriented care.

BACKGROUND: While insurance is integral for accessing healthcare in the US, coverage alone may not ensure access, especially for those publicly insured. Access barriers for Medicaid-insured patients are rooted in social drivers of health, insurance complexities in the setting of managed care plans, and federal- and state-level policies. Elucidating barriers at the health system level may reveal opportunities for sustainable solutions.
METHODS: To understand barriers to ambulatory care access for patients with Medi-Cal (California\'s Medicaid program) and identify improvement opportunities, we performed a qualitative study using semi-structured interviews of a referred sample of clinicians and administrative staff members experienced with clinical patient encounters and/or completion of referral processes for patients with Medi-Cal (n = 19) at a large academic medical center. The interview guide covered the four process steps to accessing care within the health system: (1) scheduling, (2) referral and authorization, (3) contracting, and (4) the clinical encounter. We transcribed and inductively coded the interviews, then organized themes across the four steps to identify perceptions of barriers to access and improvement opportunities for ambulatory care for patients with Medi-Cal.
RESULTS: Clinicians and administrative staff members at a large academic medical center revealed barriers to ambulatory care access for Medi-Cal insured patients, including lack of awareness of system-level policy, complexities surrounding insurance contracting, limited resources for social support, and poor dissemination of information to patients. Particularly, interviews revealed how managed Medi-Cal impacts academic health systems through additional time and effort by frontline staff to facilitate patient access compared to fee-for-service Medi-Cal. Interviewees reported that this resulted in patient care delays, suboptimal care coordination, and care fragmentation.
CONCLUSIONS: Our findings highlight gaps in system-level policy, inconsistencies in pursuing insurance authorizations, limited resources for scheduling and social work support, and poor dissemination of information to and between providers and patients, which limit access to care at an academic medical center for Medi-Cal insured patients. Many interviewees additionally shared the moral injury that they experienced as they witnessed patient care delays in the absence of system-level structures to address these barriers. Reform at the state, insurance organization, and institutional levels is necessary to form solutions within Medi-Cal innovation efforts.

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BACKGROUND: Medical mistrust, rooted in unethical research, is a barrier to cancer-related health care for Black/African American (AA) persons. Understanding trust, mistrust, and health care experiences is crucial, especially in multiple myeloma (MM), which disproportionately burdens Black/AA persons in incidence and survival.
OBJECTIVE: This study qualitatively examines the experiences of Black/AA and White dyads (patient with MM and adult caregiver) to gain insights into these phenomena.
METHODS: From November 2021 to April 2022, we recruited 21 dyads from the UNC Lineberger Comprehensive Cancer Center. Participants completed a sociodemographic survey and a 60-90 min semi-structured interview. We used ATLAS.ti v9 for project management and to facilitate data analysis using the Sort and Sift, Think and Shift approach (ResearchTalk Inc).
RESULTS: We interviewed 21 racially concordant dyads (11 Black/AA, 10 White) with mean patient ages of 70 (Black/AA) and 72 (White) at enrollment. Both Black/AA and White caregivers had a mean enrollment age of 68. The mean duration from MM diagnosis to enrollment for all patients was 5.5 years. Four key themes emerged: (1) knowledge and trust, (2) heightened emotions and discomfort, (3) differing mental constructs of health care experiences, and (4) mitigating mistrust, which varied by self-identified race. Black/AA participants had greater knowledge of historical events like the U.S. Public Health Service Untreated Syphilis Study at Tuskegee and carried the emotional burden longer. They also emphasized self-learning and self-guided research about MM for informed medical decision-making. Both Black/AA and White dyads emphasized the pivotal role of patient-provider relationships and effective communication in fostering trust and addressing concerns.
CONCLUSIONS: Our study offers contextual insights into the enduring challenges of medical mistrust, particularly within the Black/AA community, and its implications for patients and caregivers accessing and receiving MM-related care. Future studies should leverage these insights to guide the development of multilevel interventions addressing medical mistrust within the Black/AA community.

BACKGROUND: During the first year postpartum, about 25 per cent of Swedish women with severe perineal trauma (SPT), i.e., a third- or fourth-degree perineal laceration at childbirth, are unsatisfied with their healthcare contacts. Further, there is a lack of research on the more long-term experiences of healthcare encounters among women with persistent SPT-related health problems. This study explores how women with self-reported persistent SPT-related health problems experience their contact with healthcare services 18 months to five years after childbirth when the SPT occurred.
METHODS: In this descriptive qualitative study, a purposive sample of twelve women with self-reported persistent health problems after SPT were individually interviewed from November 2020 - February 2022. The data was analysed using inductive qualitative content analysis.
RESULTS: Our results showed a paradoxical situation for women with persistent health problems due to SPT. They struggled with their traumatised body, but healthcare professionals rejected their health problems as postpartum normalities. This paradox highlighted the women\'s difficulties in accessing postpartum healthcare, rehabilitation, and sick leave, which left them with neglected healthcare needs, diminished emotional well-being, and loss of financial and social status. Our results indicated that these health problems did not diminish over time. Consequently, the women had to search relentlessly for a \'key person\' in healthcare who acknowledged their persistent problems as legitimate to access needed care, rehabilitation, and sick leave, thus feeling empowered.
CONCLUSIONS: Our study revealed that women with persistent SPT-related health problems experienced complex health challenges. Additionally, their needs for medical care, rehabilitation, and sick leave were largely neglected. Thus, the study highlights an inequitable provision of SPT-related healthcare services in Sweden, including regional disparities in access to care. Hence, the authors suggest that Swedish national guidelines for SPT-related care need to be developed and implemented, applying a woman-centered approach, to ensure equitable, effective, and accessible healthcare.