Characterization of Disease Severity and Stability in NMOSD: A Global Clinical Record Review with Patient Interviews.

INTRODUCTION: We sought insights into the classification of and factors associated with relapse severity and disease stability in neuromyelitis optica spectrum disorder (NMOSD) clinical practice worldwide. METHODS: Neurologists recruited from six countries (the USA, Germany, Italy, Brazil, South Korea, and China) participated in a 30-60 minute online survey and submitted two to four clinical records for aquaporin-4-immunoglobulin G (AQP4-IgG)-seropositive adults with NMOSD, which included patient demographics, diagnosis, maintenance treatment history, relapse occurrence, and severity. Separately, patients with NMOSD receiving maintenance therapy were interviewed over the telephone about their treatment journey, as well as perceptions of relapse severity and disease stability, and their potential influence on treatment decisions. RESULTS: Clinical records for 1185 patients with AQP4-IgG-seropositive NMOSD were provided by 389 neurologists (July-August 2020); 33 patients were interviewed (October-November 2020). There was no clear consensus on how relapse severity was defined in clinical practice, with geographical variations in relapse classification also found. Neurologists tended to rely on clinical assessments when determining severity, viewing each relapse in isolation, whereas patients had a more subjective view based on the changes in their daily lives and comparisons with prior relapses. Similarly, there was a disconnect in the definition of disease stability: the complete absence of relapses was more important for patients than for neurologists. CONCLUSION: A clear consensus on how to assess relapse severity and disease stability is needed to ensure that patients receive appropriate and timely treatment. In the future, clinical measures should be combined with patient-focused assessments.

Understanding Treatment Decisions in Neuromyelitis Optica Spectrum Disorder: A Global Clinical Record Review with Patient Interviews.

INTRODUCTION: We sought insights into neuromyelitis optica spectrum disorder (NMOSD) treatment practices worldwide. METHODS: Neurologists from the USA, Germany, Italy, Brazil, South Korea, and China completed an online survey, contributing clinical records for aquaporin-4 (AQP4) immunoglobulin G (IgG)-seropositive adults with NMOSD, which included patient demographics, diagnosis, maintenance treatment history, relapse occurrence, and severity. Interviewed patients receiving NMOSD maintenance therapy provided information about their diagnosis, treatment, perceptions about relapse severity or disease stability, and treatment switches. RESULTS: A total of 389 neurologists submitted clinical records for 1185 patients with AQP4-IgG-seropositive NMOSD; 33 patients with NMOSD were interviewed. Approximately 25% (228/910) of patients from the clinical record review (CRR) were initially misdiagnosed; 24% (8/33) of patients interviewed reported formal misdiagnosis. Misdiagnosis was associated with treatment delay and more relapses compared with correct diagnosis (mean 3.3 vs 2.8). Maintenance therapy was not initiated within 2 months for 47% (221/472) of patients from the CRR and 24% (8/33) of interviewed patients. Oral corticosteroids/immunosuppressive therapies were typically the first maintenance treatment initiated, except for the USA, where monoclonal antibodies were equally likely to be prescribed. Relapse severity influenced the decision to initiate/change therapy and use monoclonal antibodies. Of interviewed patients, 76% (25/33) did not recall having a choice of treatment and many did not know the rationale for treatment choice. CONCLUSION: Misdiagnosis of NMOSD appears to be common and is associated with a delay in initiation of maintenance therapy, with decisions influenced by relapse severity. Further real-world studies assessing relapse severity in treatment initiation/switch are required to revise NMOSD treatment recommendations.

Provision of Early Pregnancy Loss Care in New York Federally Qualified Health Centers.

BACKGROUND: Office-based early pregnancy loss (EPL) care is safe and suitable to Federally Qualified Health Centers (FQHCs); prevalence of provision in FQHCs is unknown. METHODS: We conducted a mailed site-level survey of FQHCs in New York State (n = 405). Sites that offered prenatal care were eligible for analysis. Questions included provision of and barriers to providing EPL care options. Content analysis was used for write-in responses to barriers. We conducted bivariate analyses using Fisher's Exact tests and risk ratios to investigate associations between EPL care provision and the independent variables site urbanicity, prenatal clinician type, and ultrasound access. RESULTS: Of 181 mailings returned, 63 sites were eligible (response rate 44.7%); 88.9% provided expectant management, 53.9% medication management, and 23.8% uterine aspiration. Common barriers included lack of clinical infrastructure, poor ultrasound access, and insufficient training. Some held perceived barriers regarding uterine aspiration. Sites with regular ultrasound access were 1.85 times as likely to provide uterine aspiration as sites without regular ultrasound access (95% CI, 1.16-2.95). CONCLUSIONS: Few New York FQHCs provided comprehensive EPL care. Supporting FQHCs to overcome barriers may expand access to EPL treatment in primary care and increase continuity and patient centeredness.

Barriers and Enablers to Family Physicians' Provision of Early Pregnancy Loss Management in the United States.

BACKGROUND: Early pregnancy loss (EPL) is a common experience. Treatment options include expectant management, medication, and uterine aspiration. Although family physicians can offer comprehensive EPL treatment in their office-based settings, few actually do. This study explored the postresidency provision of EPL management and factors that inhibit or enable providing this care among family physicians trained in early abortion during residency. METHODS: Using an exploratory sequential mixed-methods design, we studied a sample of family physicians trained in early abortion during residency. We initially interviewed a subset trained in uterine aspiration during residency, then surveyed the entire sample. Interview transcripts were coded and analyzed using grounded theory; results informed survey development. On survey responses, we used Pearson χ2 to examine the association between certain variables and provision of EPL care options. RESULTS: Most of the 15 interview and 231 survey respondents provided expectant management of EPL. Of the survey respondents, 47.2% provided medication management and 11.4% manual vacuum aspiration. Key challenges and facilitators involved referral, training, ultrasound access, and managing systems-level issues. In bivariate analyses, providing prenatal care, offering abortion care, access to ultrasound, and competency were positively associated with providing EPL management options (p < .05). CONCLUSIONS: Clinical training alone is insufficient to expand access to comprehensive EPL care in family medicine office-based settings. Supporting family physicians during and after residency with training and technical assistance to address barriers to care may strengthen their abilities to champion practice change and expand access to comprehensive EPL management options.

Women's experiences with early pregnancy loss in the emergency room: A qualitative study.

OBJECTIVES: To understand the reasons why women present to the Emergency Room (ER) for Early Pregnancy Loss (EPL)-related care, how they perceive care and counseling there, and their overall experience during and after their visit. STUDY DESIGN: This qualitative study utilized semi-structured telephone interviews. Participants were recruited in a large urban ER; women who experienced EPL were interviewed by telephone about their experiences 1-3 weeks after their visit. Audio recordings were transcribed and coded by two independent coders. MAIN OUTCOME MEASURES: This qualitative study utilized semi-structured interviews without the use of formal outcome measurement tools. RESULTS: Of the sixty-seven women recruited, ten completed the full telephone interview. Interview participants' responses were grouped into four categories: Feelings about EPL, reasons for going to the ER, experience in the ER, and experience after leaving the ER. Women had mixed feelings about their ER experiences; many reported chaos, lack of information or lack of emotional support, while a few felt informed and supported. Many did not know much about EPL before their experience. CONCLUSIONS: ER care for women experiencing suspected or confirmed EPL may not be addressing the emotional needs and knowledge gaps of women. Patient education, emotional support, and clear plans for outpatient follow up are critical. Further research is needed to guide interventions to improve care.

Beyond the Surface: Care Seeking Among Patients Initiating Contraceptive Implant in an Urban Federally Qualified Health Center Network.

PURPOSE: To describe rates of and reasons for follow-up among adolescents and adults receiving contraceptive implants in a Federally Qualified Health Center (FQHC). METHODS: Retrospective comparison of patient-initiated implant-related contacts during the 6 months postinsertion among adolescents (110) and adults (154) who had implants placed at a FQHC network. RESULTS: Forty percent of adolescents and 26% of adults initiated follow-up ( P = .016). Bleeding changes and discussing removal were the most common reasons for follow-up for both groups. Adolescents (5.5%) and adults (9.0%) had similar removal rates ( P = .348). However, among patients who discussed implant removal, adults were more likely to have removals compared with adolescents ( P = .002). CONCLUSIONS: Other FQHCs may anticipate a similar experience to ours, where adolescents may be more likely than adults to initiate implant-related follow up, with removal rates of less than 10% at 6 months. Further study of physician decision making and patient autonomy regarding implantable contraception removal requests is warranted.