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1.
Pediatr Blood Cancer ; 70(8): e30429, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37243390

RESUMO

Cytomegalovirus retinitis (CMVR) following hematopoietic stem cell transplantation (HCT) for a primary immunodeficiency is a rare but highly morbid condition with potential irreversible consequences despite optimal antiviral pharmacotherapy. Viral-specific T cells (VSTs) pose a promising and safe approach eradicating intractable viral disease. We describe the case of a 21-month-old male with Wiskott-Aldrich syndrome (WAS) and CMVR post HCT with sustained long-term virologic and clinical response after CMV-specific T-cell therapy. This case highlights the need to consider VST as an adjunct upfront strategy in refractory CMVR and for routine ophthalmologic screening and surveillance in high-risk patients post HCT.


Assuntos
Retinite por Citomegalovirus , Transplante de Células-Tronco Hematopoéticas , Humanos , Masculino , Lactente , Retinite por Citomegalovirus/terapia , Retinite por Citomegalovirus/tratamento farmacológico , Antivirais/uso terapêutico , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Fosfoproteínas , Linfócitos T
2.
Doc Ophthalmol ; 146(3): 257-266, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-37219642

RESUMO

PURPOSE: Diopsys® NOVA™ is a novel full-field electroretinography (ffERG) device that can make rapid measurements of retinal electrophysiologic function. Diagnosys® Espion 2™ is a clinical gold-standard ERG device. This study aimed to investigate whether light-adapted Diopsys® NOVA™ fixed-luminance flicker ffERG magnitude and implicit time (converted from phase) measurements correlate with light-adapted Diagnosys® Espion 2™ flicker ffERG amplitude and implicit time measurements, respectively. METHODS: Twelve patients (22 eyes) with various retinal and uveitic diseases underwent light-adapted Diagnosys® Espion 2™ and Diopsys® NOVA™ fixed-luminance flicker testing. Diopsys® magnitude and implicit time (converted from phase) measurements were compared to Diagnosys® amplitude and implicit time measurements, and a Pearson correlation was used to evaluate any existing correlation. Groups were also compared using generalized estimating equations. Bland-Altman plots were utilized to determine agreement between the comparison groups. RESULTS: Age of patients ranged from 14 to 87 years. 58% (n = 7/12) of patients were female. A significant, positive correlation (r = 0.880, P < 0.001) was observed between magnitude (Diopsys®) and amplitude (Diagnosys®) measurements. Amplitude increases by 6.69 µV for each 1 µV increase in Magnitude (p-value < 0.001). A statistically significant, strong positive correlation was observed between Diopsys® implicit time measurements (converted from phase) and Diagnosys® implicit time measurements (r = 0.814, p-value < 0.001). For each 1 ms increase in Diopsys® implicit time, Diagnosys® implicit time increases by 1.13 ms (p-value < 0.001). CONCLUSIONS: There is a statistically significant positive correlation between light-adapted Diopsys® NOVA™ fixed-luminance flicker amplitude and Diagnosys® flicker magnitude values. Additionally, there is a statistically significant positive correlation between Diopsys® NOVA™ fixed-luminance flicker implicit time (converted from phase) and Diagnosys® flicker implicit time values. These results imply that the Diopsys® NOVA™ module, which utilizes the nonstandard shortened International Society for Clinical Electrophysiology of Vision (ISCEV) ERG protocol, can produce reliable light-adapted flicker ffERG measurements.


Assuntos
Eletrorretinografia , Retina , Humanos , Feminino , Adolescente , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Masculino , Eletrorretinografia/métodos , Estimulação Luminosa
3.
J Neurol Surg A Cent Eur Neurosurg ; 85(2): 126-131, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36481997

RESUMO

BACKGROUND: The rise of social media has allowed for individuals and patients to connect with each other and influence patient behavior. This study aimed to improve our understanding of the patients' experience with cerebral cavernous malformations (CCM) via social media. METHODS: Instagram and Twitter were searched using terms of ("cavernoma," "cavernous malformations," "cavernous angioma," or "cav mal"). Public Instagram posts tagged with "#cavernoma" and "@cavernoma" identified 327 posts that directly included a patient's own experience. Twitter posts that included "#cavernoma" and "@cavernoma" were searched, yielding 75 after eliminating those that did not pertain to the patient's own experience. The posts and tweets were coded for relevant themes related to their experience with the disease. RESULTS: Overall, more patients are using Instagram (n = 327) over Twitter (n = 84) to share their personal experience with CCM with a trend for male patients to use Twitter more compared to females with a female predominance in Instagram. A total of 277 of 327 (84.7%) Instagram posts and 67 of 84 (89.3%) Twitter posts were made after the patient's surgery. The most common theme on Instagram was focused on the postoperative rehabilitation process and mobility support (52.0 and 24.5%, respectively). Other common themes present on Twitter and Instagram were recounting symptoms and complications and life satisfaction (26.0 and 24.2%, respectively). Cavernoma patients prior to surgery were more likely to discuss on Instagram their symptoms (p = 0.001), fear of bleeding (p < 0.001), and mental health (p = 0.014). Postoperatively, cavernoma patients were more likely to discuss disability than they were preoperatively (p = 0.001). CONCLUSION: Social media platforms offer a communication tool for patients with CCM patients to share their experience with other patients and the general public and portrays their personal experience with CCM. These platforms allow for physicians to better understand the patient experience following cavernoma surgery.


Assuntos
Hemangioma Cavernoso do Sistema Nervoso Central , Mídias Sociais , Humanos , Masculino , Feminino , Hemangioma Cavernoso do Sistema Nervoso Central/cirurgia , Percepção
4.
Interv Neuroradiol ; : 15910199231167914, 2023 Apr 12.
Artigo em Inglês | MEDLINE | ID: mdl-37050848

RESUMO

INTRODUCTION: Social media serves as a way for patients to post about their condition online, as well as for healthcare providers to disseminate information. Intrinsic bias exists exist when patients are given surveys by physicians or healthcare providers. We aim to investigate patient-centered social media posts regarding cerebral aneurysms on Instagram, Twitter, and TikTok. METHODS: Posts that included "brain aneurysm", "#brainaneurysm", "#brainaneurysmsurvivor", and "#aneurysmsurvivor" were queried on Instagram, Twitter, and TikTok. Any posts unrelated to the patient experience were excluded. Five hundred and fourteen Instagram posts, fourty tweets, and five hundred seventy three TikTok posts about the patient experience were identified. Posts were coded for the relevant themes related to their experience with the disease. RESULTS: Most posts made online were by women (892, 82.1%). Patients made the post most of the time (776, 67.5%), while other individuals posted less often (420, 36.5%). The most common themes on Instagram were survival (475, 87.3%), spreading positivity (385, 70.77%), and recovery/rehabilitation (329, 60.5%). TikTok users most often referred to survival (573, 97.1%), raising awareness (464. 78.6%), and spreading positivity (414, 70.2%). Patients were more likely to discuss pre-operative pain (p = 0.0382), postoperative pain (p < 0.0001), invisible illness (p = 0.0130), humor (p = 0.0028), recovery (p < 0.0001), angiograms (p < 0.0001), and resiliency (p < 0.0001) when compared to other individuals posting about a patients' experience. CONCLUSION: Patients often focus on different aspects of their care than do other individuals. This may be useful for physicians discussing treatment plans and prognoses with the patient and their families.

5.
J Craniovertebr Junction Spine ; 14(3): 288-291, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37860020

RESUMO

Introduction: Social media has developed exponentially over the last decade as a means for individuals and patients to connect to others and has provided a unique opportunity for physicians to provide broader information to the general public to attempt to positively modify health behavior. The purpose of this study was to assess the patient's perception of spinal cord injury (SCI) on social media. Methods: Instagram and Twitter social media platforms were analyzed to determine posts written by patients with SCI. The initial search for Instagram posts tagged with "#spinalcordinjury" yielded over 270,000 posts in April 2021. Posts pertaining to the patient's experience were retrospectively collected from January 2020 to April 2021. Twitter posts that included "#spinalcordinjury," "@spinalcordinjury," and "spinal cord injury" were retrospectively collected in April 2021. One hundred seventeen tweets were found that were directly from a patient with SCI. Themes associated with patients' experiences living with SCI were coded. Results: The most common theme on Instagram was spreading positivity and on Twitter was the appearance of the wheelchair (75.8% and 37.3%, respectively). Other common themes on Instagram were the appearance of a wheelchair (71.8%), recovery or rehabilitation (29.9%), and life satisfaction (29.0%). Prevalent themes on Twitter included spreading positivity (23.2%) and recovery or rehabilitation (21.3%). Conclusion: The prevalence of themes of positivity and awareness may indicate the utilization of social media as a support mechanism for patients living with SCI. Identification of prevalent themes is important for the holistic treatment of SCI survivors.

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