Vaso-occlusive crises in patients with sickle cell disease: Parents' perspectives and association with disease outcomes

This study aimed to determine the level of awareness about VOCs among parents of patients with SCD and its correlation with the disease outcomes.MethodsA cross-sectional study was conducted including 123 parents of children with SCD, aged 2–18 years old. All recruited participants were residents of Almadinah Almunawwarah. A structured and validated questionnaire was used for data collection.ResultsThe mean total knowledge score was 30 ± 4. The majority of parents (74%) had a good level of knowledge about SCD. There was a significant association between the total knowledge score and the outcome of VOCs during the year prior (p 
Source: Journal of Taibah University Medical Sciences - Category: Universities & Medical Training Source Type: research

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AbstractPurposePatients with sickle cell disease (SCD) may experience sickle cell-related pain crises, also referred to as vaso-occlusive crises (VOCs), which are a substantial cause of morbidity and mortality. The study explored how VOC frequency and severity impacts health-related quality of life (HRQoL) and work productivity.MethodsThree hundred and three adults with SCD who completed an online survey were included in the analysis. Patients answered questions regarding their experience with SCD and VOCs, and completed the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) and the Workplace Produc...
Source: Quality of Life Research - Category: Health Management Source Type: research
Title: Sickle Cell Disease (Anemia)Category: Diseases and ConditionsCreated: 12/31/1997 12:00:00 AMLast Editorial Review: 1/10/2020 12:00:00 AM
Source: MedicineNet Chronic Pain General - Category: Anesthesiology Source Type: news
Abstract Sickle cell disease is a severe hemoglobin disorder, considered the most common monogenic disease worldwide. Although genetic and molecular bases have long been characterized, the pathophysiology remains incompletely elucidated and therapeutic options are limited. A role for innate immune cells, including monocytes, neutrophils, invariant natural killer T cells, platelets and mast cells, has been increasingly suggested in promoting inflammation, adhesion and pain in sickle cell disease. Here, we thoroughly review the involvement of these novel major actors in sickle cell disease pathophysiology, highlight...
Source: Haematologica - Category: Hematology Authors: Tags: Haematologica Source Type: research
Conclusions: Findings suggest that good sleep may serve as a protective factor for better matching pain to HCU. Results should be interpreted in the context of study limitations. Research is needed to investigate possible mechanisms linking sleep duration to HCU in response to pain and to ascertain if sleep patterns influence the relationship between pain and other functional outcomes in youth with SCD. Clinically, these findings support the need to acknowledge and address the role that sleep plays in responding to SCD pain in pediatric populations.
Source: The Clinical Journal of Pain - Category: Anesthesiology Tags: Original Articles Source Type: research
Source: NPR Health and Science - Category: Consumer Health News Authors: Source Type: news
Rationale: Primary melanin-producing tumors are rare extra-axial neoplasms OPEN of the central nervous system. In the literature, few case reports have discussed neoplasms involving the cavernous sinus; of these, only 4 have reported on neoplasms originating in Meckel cave. The diagnostic approach, including clinical and radiological analysis, is challenging, and cytopathological assessment with a molecular basis is the best approach to discriminate between these lesions. Herein, we discuss the pathophysiology, diagnostic approach, intraoperative features, and postoperative management in a unique case of primary pigmente...
Source: Medicine - Category: Internal Medicine Tags: Research Article: Clinical Case Report Source Type: research
Authors: Sackner MA, Lopez JR, Banderas V, Adams JA Abstract This review deals with opioid addiction, chronic pain, and an innovative, noninvasive technology with simultaneous, beneficial applications for both conditions. This technology, called passive simulated jogging device (GENTLE JOGGER, JD) targets addiction and pain by increasing endothelial nitric oxide (NO) bioavailability. It can be self-administered while sitting or lying without resorting to multitasking thereby allowing watching television or operating a computer while effortless, physical activity is produced from motorized foot pedals repetitively s...
Source: Journal of Opioid Management - Category: Addiction Tags: J Opioid Manag Source Type: research
Oral arginine supplementation significantly increased plasma arginine levels and improved acute pain-related outcomes in children with sickle cell disease in a randomized, placebo-controlled, phase 2 trial.Medscape Medical News
Source: Medscape Medical News Headlines - Category: Consumer Health News Tags: Pediatrics News Source Type: news
Authors: Smith-Whitley K Abstract Pregnancy in women with sickle cell disease (SCD) is associated with increased maternal and fetal morbidity and mortality. Outcomes vary widely owing to methodological limitations of clinical studies, but overall, hypertensive disorders of pregnancy, venothromboembolism, poor fetal growth, and maternal and perinatal mortality are increased globally. Few therapeutic interventions have been explored other than prophylactic and selective transfusion therapy. Unfortunately, existing data are limited, and it remains unclear whether prophylactic use of chronic transfusions will improve p...
Source: Hematology ASH Education Program - Category: Hematology Tags: Hematology Am Soc Hematol Educ Program Source Type: research
We present the case of a young woman with bilateral osteonecrosis of the femoral head at varying stages of progression; we also highlight other important comorbid complications (eg, chronic pain requiring long-term opioids, debility, and social isolation) and postoperative outcomes. In this review, partly based on recommendations on osteonecrosis management from the 2014 evidence-based report on sickle cell disease from the National Heart, Lung and Blood Institutes, we also discuss early signs or symptoms of osteonecrosis of the femoral head, radiographic diagnosis and staging criteria, hydroxyurea effect on progression to...
Source: Hematology ASH Education Program - Category: Hematology Tags: Hematology Am Soc Hematol Educ Program Source Type: research
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