Racial variability in immune responses only partially explains differential systemic sclerosis disease severity.

OBJECTIVE: To understand if autoantibodies account for racial variation in disease severity, we compared autoantibody distribution and associated phenotype between self-identified black and white systemic sclerosis (SSc) patients. METHODS: 803 black and 2178 white SSc patients had systematic testing for autoantibodies using Euroimmun (centromere (ACA), RNA-polymerase III (POLR3), Scl70, PM/Scl, NOR90, Th/To, Ku, U3RNP and Ro52) and commercial ELISA (U1RNP). In this observational study, logistic regression was performed to assess the association between self-identified race and outcomes, adjusting for autoantibodies. To estimate whether the effect of race was mediated by autoantibody status, race coefficients from multivariate models including and excluding autoantibodies were compared. RESULTS: Anti-Scl70, anti-U1RNP, anti-U3RNP, anti-Th/To, anti-Ku and anti-NOR90 were more common in the black cohort than in the white cohort, which was enriched for ACA, anti-POLR3 and anti-PM/Scl. Black individuals had a higher prevalence of severe Raynaud's, skin, lung, gastrointestinal and renal disease whereas white individuals had a higher prevalence of severe heart and muscle disease. Adjusting for autoantibodies decreased the effect of race on outcome for telangiectasias, forced vital capacity <70%, pulmonary hypertension and severe lung, heart, muscle and gastrointestinal disease by 11%-44% and increased the association between race and renal crisis and severe kidney disease by 37%-52%. CONCLUSIONS: This study is the largest systematic analysis of autoantibody responses in a geographically diverse population of black SSc patients. Black and white individuals with SSc have distinct autoantibody profiles. Autoantibodies explain only a fraction of the effect of race on clinical outcomes, suggesting other factors contribute to disparate outcomes between these groups.

End of life care for glioblastoma patients at a large academic cancer center.

Glioblastoma (GBM) is a universally fatal disease, complicated by significant cognitive and physical disabilities, inherent to the disease course. The purpose of this study was to retrospectively analyze end-of-life care for GBM patients at an academic center and compare utilization of these services to national quality of care guidelines, with the goal of identifying opportunities to improve end-of-life care. Single center retrospective cohort study of GBM patients at Johns Hopkins Hospital (JHH) between 2009 and 2014, using electronic medical records and hospice records. Comprehensive medical record review of 100 randomly selected patients with GBM, who were actively treated at JHH. Secondary analysis of all JHH GBM patients (n = 45) who received hospice care at Gilchrist Services, our largest provider, during this time period. Of 100 patients, 76 were referred to hospice. Despite the poor survival and changes in mental capacity associated with this disease, only 40% of individuals had documentation of code status and only 17% had any documentation of advance directives (ADs). None had documentation by a health care provider of a formal symptom, psychosocial, or spiritual assessment at greater than 50% of clinic visits. Only 17% used chemotherapy in their last month of life. 37% were hospitalized in the last month of life for an average of 9 days. Of the Gilchrist Services patients, the median length of stay in hospice was 21 days and 64% of these patients died in their residence with hospice services. Documentation of palliative care and end-of-life measures could improve quality of care for GBM patients, especially in the use of ADs, symptom, spiritual, and psychosocial assessments, with earlier use of hospice to prevent end-of-life hospitalizations.

A qualitative study of barriers to and facilitators of optimal engagement in care among PLWH and substance use/misuse.

BACKGROUND: Persons living with HIV (PLWH) and substance use/misuse experience significant barriers to engagement in HIV care at every step of the HIV care continuum including: (1) HIV testing and diagnosis (2) linkage to clinical care (3) retention in care pre-antiretroviral therapy (ART) (4) ART initiation and adherence (5) viral suppression. We qualitatively explored the facilitators of and barriers to participation in the HIV care continuum among PLWH with substance use/misuse. METHODS: We performed semi-structured in-depth interviews with 34 PLWH in care with recent substance use. The transcripts were analyzed in an iterative process using an editing style analysis. Interviews were conducted until thematic saturation was achieved. RESULTS: Participants attributed an escalation in drug use at the time of diagnosis to denial of their disease and the belief that their death was inevitable and cited this as a barrier to treatment entry. In contrast, participants reported that experiencing adverse physical effects of uncontrolled HIV infection motivated them to enroll in care. Reported barriers to retention and adherence to care included forgetting medications and appointments because of drug use, prioritizing drug use over HIV treatment and side effects associated with medications. Participants described that progression of illness, development of a medication taking ritual and a positive provider-patient relationship all facilitated engagement and reengagement in care. CONCLUSIONS: PLWH with substance use engaged in care describe barriers to and facilitators of optimal engagement related to and distinct from substance use. Greater understanding of the biologic, psychological and social factors that promote and impair engagement in care can inform interventions and reduce the increased morbidity and mortality experienced by PLWH with substance use.