Experiences of sexual and gender minority people living with multiple sclerosis in Northern California: An exploratory study.

BACKGROUND: Sexual and gender minority (SGM) individuals may face unique challenges in accessing quality medical care due to structural disparities, social discrimination, and lack of culturally competent healthcare. Multiple sclerosis (MS) requires complex care. Little research has been carried out at the intersection between SGM identity and MS care. OBJECTIVE: To identify unmet clinical and social needs in our clinical population of SGM patients with MS. METHODS: Patients with MS who self-identified as SGM were recruited through the UCSF MS Center and a National MS Society web post to complete a 45-minute web-based (Qualtrics) survey. The mixed qualitative and quantitative survey covered experiences with different domains of MS care, drug/alcohol use, relationship status, social support, and participation in MS and SGM communities. RESULTS: Among the 26 survey respondents, mean age was 50.2 (SD 10.6) years; gender identity was women (46%) men (38%) and genderqueer, transgender, or other (15%); sexual orientation was gay/lesbian/bisexual (35%), pansexual/queer (27%), questioning (23%), or other identity (15%). Over two thirds (69%) of respondents were partnered. Overall satisfaction with MS care was high: 79.2% participants scored ≥4/5 (somewhat or extremely satisfied); participants dissatisfied with their care cited feeling dismissed. While 87.5% felt that their SGM identities did not affect their MS care, still 30% did report feeling uncomfortable discussing their SGM identities with their clinician. Participants rated low impact of having MS on participation in SGM communities (mean 2.4/5 on Likert scale); those participants reporting higher impact cited fatigue, immobility and stigmatization of disease as primary factors. Similarly, SGM status had low effect on participation in the MS community (mean 1.4/5); higher impact was related to apprehension around identity disclosure to new groups. Identified resources that might improve MS care included more representation, inclusivity and openness from clinicians, and SGM-focused MS support groups. DISCUSSION: In this exploratory survey of the needs of SGM people living with MS in Northern California, most participants reported that they were unlikely to participate in activities in the SGM community due to MS status or symptoms, however most felt that their SGM status did not affect their MS care. Given the center's location in a hub for SGM community and activism, surveying individuals in other settings would provide greater insights into the role of community, clinical support and the experience of SGM people living with MS.

Toward a low-cost, in-home, telemedicine-enabled assessment of disability in multiple sclerosis.

BACKGROUND: Remote assessment of neurological disability in people with multiple sclerosis (MS) could improve access to clinical care and efficiency of clinical research. OBJECTIVE: To develop and validate a telemedicine-based MS disability examination that does not require an in-home examiner. METHODS: Adults with MS were recruited after a standardized in-person Expanded Disability Status Scale (EDSS) evaluation, and within 1 week underwent a blinded televideo-enabled EDSS examination with a different clinician. EDSS and tele-EDSS scores were compared. RESULTS: Overall, 41 adults participated (mean (standard deviation (SD)) age: 47.0 years (11.6); median EDSS: 2 (range: 0-7)); 37 required no in-home assistance for the tele-EDSS evaluation (e.g. help positioning camera). Mean difference between EDSS and tele-EDSS was 0.34 (95% confidence interval (CI): 0.07-0.61). For 88% of evaluations, tele-EDSS and EDSS scores were within 1 point (similar to reported in-person inter-rater differences). Unweighted kappa for agreement within 0.5 point was 0.72. Correlation for individual functional systems (FS) ranged from modest (vision: 0.37) to high (bowel/bladder: 0.79). Overall correlation between EDSS and tele-EDSS was 0.89 (p < 0.0001); and 0.98 (p < 0.0001) at EDSS range: 4-7. CONCLUSION: In this proof of principle study, disability evaluation in mild to moderate MS is feasible using telemedicine without an aide at the patient's location.

Infliximab for the treatment of CNS sarcoidosis: A multi-institutional series.

OBJECTIVE: To describe clinical and imaging responses in neurosarcoidosis to infliximab, a monoclonal antibody against tumor necrosis factor-α. METHODS: Investigators at 6 US centers retrospectively identified patients with CNS sarcoidosis treated with infliximab, including only patients with definite or probable neurosarcoidosis following rigorous exclusion of other causes. RESULTS: Of 66 patients with CNS sarcoidosis (27 definite, 39 probable) treated with infliximab for a median of 1.5 years, the mean age was 47.5 years at infliximab initiation (SD 11.7, range 24-71 years); 56.1% were female; 62.1% were white, 37.0% African American, and 3% Hispanic. Sarcoidosis was isolated to the CNS in 19.7%. Using infliximab doses ranging from 3 to 7 mg/kg every 4-8 weeks, MRI evidence of a favorable treatment response was observed in 82.1% of patients with imaging follow-up (n = 56), with complete remission of active disease in 51.8% and partial MRI improvement in 30.1%; MRI worsened in 1 patient (1.8%). There was clinical improvement in 77.3% of patients, with complete neurologic recovery in 28.8%, partial improvement in 48.5%, clinical stability in 18.2%, worsening in 3%, and 1 lost to follow-up. In 16 patients in remission when infliximab was discontinued, the disease recurred in 9 (56%), typically in the same neuroanatomic location. CONCLUSIONS: Most patients with CNS sarcoidosis treated with infliximab exhibit favorable imaging and clinical treatment responses, including some previously refractory to other immunosuppressive treatments. CLASSIFICATION OF EVIDENCE: This study provides Class IV evidence that for patients with CNS sarcoidosis infliximab is associated with favorable imaging and clinical responses.