Citations

Background and purpose Thoracolumbar and sacral spinal epidural arteriovenous fistulas (SEDAVFs) are an increasingly recognized form of spinal vascular malformation. The purpose of this study was to perform a systematic review of the demographics, clinical presentation and treatment results of thoracolumbar SEDAVFs. Materials and methods Pubmed, Scopus and Web of Science databases were searched from January 2000 to January 2018 for articles on treatment of SEDAVFs. Pooled data of individual patients were analyzed for demographic and clinical features of SEDAVFs as well as treatment outcomes. Results There were 125 patients from 11 studies included. Mean age was 63.5 years. There was a male sex predilection (69.6%). Sensory symptoms including pain or numbness were the most frequently presenting symptoms. Fistula location was the lumbosacral spine in 79.2% and the thoracic spine in 20.8%. Involvement of intradural venous drainage was more common than extradural venous drainage only (89.6% vs 10.4%). Of the 123 treated patients, endovascular therapy was performed in 67.5% of patients, microsurgery in 23.6%, and combined treatment in 8.9%. The overall complete obliteration rate was 83.5% and did not differ between groups. Clinical symptoms improved in 70.7% of patients, were stable in 25%, and worsened in 1.7% with no difference between treatment modalities. Conclusions Thoracic and lumbosacral SEDAVFs often present with symptoms secondary to congestive myelopathy or compressive symptoms. Both endovascular and microsurgical treatments were associated with high obliteration rates and good clinical outcomes.

Abstract Multiple myeloma (MM) occurs in all races, but the incidence in non-Hispanic black patients (NHBs) is two to three times higher than in non-Hispanic white patients (NHWs). We determined the representation of minorities and elderly patients in MM clinical trials. Enrollment data from all therapeutic trials reported in ClinicalTrials.gov from 2000 to 2016 were analyzed. Enrollment fraction (EF) was defined as the number of trial enrollees divided by the 2014 MM prevalence. Participation in MM clinical trials varied significantly across racial and ethnic groups; NHWs were more likely to be enrolled in clinical trials (EF 0.18%) than NHBs (EF 0.06%, p < .0001) and Hispanic patients (EF 0.04%, p < .0001). The median age of trial participants was 62 years, with 7,956 participants (66%) being less than 65 years of age. Collaborations between investigators, sponsors, and the community are necessary to increase access to clinical trials to our minority and elderly patients.

Objectives: With the increased use of participatory health enabling technologies, such as social media, balancing the need for health information with patient privacy and confidentiality has become a more complex and immediate concern. The purpose of this paper produced by the members of the IMIA Participatory Health and Social Media (PHSM) working group is to investigate patient needs for health information using participatory health enabling technologies, while balancing their needs for privacy and confidentiality. Methods: Six domain areas including media sharing platforms, patient portals, web-based platforms, crowdsourcing websites, medical avatars, and other mobile health technologies were identified by five members of the IMIA PHSM working group as relevant to participatory health and the balance between data sharing and patient needs for privacy and confidentiality. After identifying the relevant domain areas, our scoping review began by searching several databases such as PubMed, MEDLINE, Scopus, and Google Scholar using a variety of key search terms. Results: A total of 1,973 studies were identified, of which 68 studies met our inclusion criteria and were included in the analysis. Results showed that challenges for balancing patient needs for information and privacy and confidentiality concerns included: cross-cultural understanding, clinician and patient awareness, de-identification of data, and commercialization of patient data. Some opportunities identified were patient empowerment, connecting participatory health enabling technologies with clinical records, open data sharing agreement, and e-consent. Conclusion: Balancing between privacy and patient needs for health information in the age of participatory health and social media offers several opportunities and challenges. More people are engaging in actively managing health through participatory health enabling technologies. Such activity often includes sharing health information and with this comes a perennial tension between balancing individual needs and the desire to uphold privacy and confidentiality. We recommend that guidelines for both patients and clinicians, in terms of their use of participatory health-enabling technologies, are developed to ensure that patient privacy and confidentiality are protected, and a maximum benefit can be realized.