What is the future of patient reported outcomes in sickle cell disease?

We describe the most highly recommended generic and disease-specific PRO tools in SCD and discuss the challenges of incorporating them in clinical practice. EXPERT OPINION: PRO measures are essential to incorporate into SCD clinical trials either as primary or secondary outcomes. The use of PRO measures in SCD facilitates a patient-centered approach, which is likely to lead to improved outcomes. Significant challenges remain in adapting PRO tools to routine clinical use and in developing countries. PMID: 33034214 [PubMed - as supplied by publisher]
Source: Expert Review of Hematology - Category: Hematology Tags: Expert Rev Hematol Source Type: research

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(University of Illinois at Chicago) Researchers at the University of Illinois Chicago will lead a $7.1 million, five-year national study to determine the effectiveness of acupuncture and guided relaxation for people with chronic pain from sickle cell disease. The National Institutes of Health grant is part of its Helping to End Addiction Long-term Initiative. The initiative aims to improve prevention and treatment strategies for opioid misuse and addiction and to enhance pain management.
Source: EurekAlert! - Medicine and Health - Category: International Medicine & Public Health Source Type: news
BACKGROUND: Patients with sickle cell disease (SCD) experience high rates of chronic pain, and have a high burden of mental health comorbidities shown to negatively influence health. There is limited research on substance use among individuals with SCD. ...
Source: SafetyLit - Category: International Medicine & Public Health Tags: Alcohol and Other Drugs Source Type: news
CONCLUSIONS: The authors interpret these results to suggest that there may be a complex interaction of neurohormonal, biological, and psychological factors associated with PMS that influence manifestation and experience of chronic pain in patients with SCD. PMID: 32763132 [PubMed - as supplied by publisher]
Source: Journal of the National Medical Association - Category: General Medicine Tags: J Natl Med Assoc Source Type: research
SICKLE cell disease (SCD) is a hemoglobinopathy characterized by a multisystem vaso-occlusive process that compromises peripheral blood flow and oxygen delivery, leading to end-organ ischemia, dysfunction, and infarction, as well as chronic pain syndromes.1,2 The abnormal hemoglobin (HgbS) alters the erythrocyte membrane and causes the red blood cell (RBC) to sickle, impairing cell deformability and flexibility. The sickled RBCs adhere to one another and obstruct blood flow. They ultimately hemolyze and are sequestered by the spleen, causing a chronic anemia.
Source: Journal of Cardiothoracic and Vascular Anesthesia - Category: Anesthesiology Authors: Tags: Case Report Source Type: research
Conclusions: Among individuals with SCD who endorse substance use, there was markedly more stress and distress with higher rates of depression and poorer quality of life. Interventions focusing on improving distress tolerance and coping to not only pain, but also social stressors, might reduce substance use. PMID: 32762425 [PubMed - as supplied by publisher]
Source: Substance Use and Misuse - Category: Addiction Tags: Subst Use Misuse Source Type: research
The objectives of this study were to determine whether the use of music by adolescents and young adults with SCD was helpful, and if so, the types of music that helped, and how music helped them. A convenience sample of nine English-speaking inpatients ages 13 to 21 years, with SCD and at least two prior hospitalizations for VOE, took part in interviews with music therapists. Participants were asked open-ended questions about both pain and music. Participants identified that music was helpful for pain relief as well as for mood regulation, focusing attention during cognitive tasks such as homework, distraction, relaxation,...
Source: Creative Nursing - Category: Nursing Authors: Tags: Creat Nurs Source Type: research
Abstract Sickle Cell Disease (SCD) is a chronic hemolytic disorder associated with frequent pain episodes, end organ damage and a shortened lifespan. Currently there exist no disease specific targeted therapies for the treatment of acute vaso-occlusive crisis (VOC) and management with analgesics and hydration is purely supportive. Improvement in understanding of disease pathophysiology has resulted in a great interest in disease modifying novel therapies and many are being evaluated in clinical trials. Here we report the results from the pre-specified mid-point analysis of the Phase 2 study of Intravenous Gamma Gl...
Source: Complementary Therapies in Medicine - Category: Complementary Medicine Authors: Tags: Complement Ther Med Source Type: research
CONCLUSION: This is the first description of TT-DENV in a SCD patient. A presumed high viral load in the transfused RBC unit probably determined the early clinical manifestation. In endemic regions dengue fever should be considered as differential diagnosis in SCD patients with fever and acute pain crisis, mainly during DENV outbreaks. PMID: 32735379 [PubMed - as supplied by publisher]
Source: Transfusion - Category: Hematology Authors: Tags: Transfusion Source Type: research
CONCLUSIONS: There is no evidence for managing adults, or children who do not have HbSS sickle cell disease. In children who are at higher risk of stroke and have not had previous long-term transfusions, there is moderate quality evidence that long-term red cell transfusions reduce the risk of stroke, and low quality evidence they also reduce the risk of other sickle cell disease-related complications. In primary and secondary prevention of stroke there is low quality evidence that switching to hydroxyurea with phlebotomy has little or no effect on the liver iron concentration. In secondary prevention of stroke there is lo...
Source: Cochrane Database of Systematic Reviews - Category: General Medicine Authors: Tags: Cochrane Database Syst Rev Source Type: research
Am J Perinatol DOI: 10.1055/s-0040-1714392 Objective The study aimed to test the hypothesis that higher Edinburgh Postnatal Depression Scale (EPDS) scores are associated with increased pain scores and opioid use during postpartum hospitalization following cesarean section. Study Design We conducted a retrospective cohort of English or Spanish-speaking women ≥18 years who had prenatal care for a singleton gestation and delivered by cesarean at ≥36 weeks within a tertiary center during 2017. Exclusions included women with fetal anomalies, intrauterine fetal demise, sickle cell disease, previously diagno...
Source: American Journal of Perinatology - Category: Perinatology & Neonatology Authors: Tags: Original Article Source Type: research
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