BackgroundHydroxyurea, chronic blood transfusions, and bone marrow transplantation are efficacious, disease-modifying therapies for sickle cell disease but involve complex risk-benefit trade-offs and decisional dilemma compounded by the lack of comparative studies. A patient decision aid can inform patients about their treatment options, the associated risks and benefits, help them clarify their values, and allow them to participate in medical decision making.ObjectiveThe objective of this study was to develop a literacy-sensitive Web-based patient decision aid based on the Ottawa decision support framework, and through a randomized clinical trial estimate the effectiveness of the patient decision aid in improving patient knowledge and their involvement in decision making.MethodsWe conducted population decisional needs assessments in a nationwide sample of patients, caregivers, community advocates, policy makers, and health care providers using qualitative interviews to identify decisional conflict, knowledge and expectations, values, support and resources, decision types, timing, stages and learning, and personal clinical characteristics. Interview transcripts were coded using QSR NVivo 10. Alpha testing of the patient decision aid prototype was done to establish usability and the accuracy of the information it conveyed, and then was followed by iterative cycles of beta testing. We conducted a randomized clinical trial of adults and of caregivers of pediatric patients to evaluate the efficacy of the patient decision aid.ResultsIn a decisional needs assessment, 223 stakeholders described their preferences, helping to guide the development of the patient decision aid, which then underwent alpha testing by 30 patients and 38 health care providers and iterative cycles of beta testing by 87 stakeholders. In a randomized clinical trial, 120 participants were assigned to either the patient decision aid or standard care (SC) arm. Qualitative interviews revealed high levels of usability, acceptability, and utility of the patient decision aid in education, values clarification, and preparation for decision making. On the acceptability survey, 72% (86/120) of participants rated the patient decision aid as good or excellent. Participants on the patient decision aid arm compared to the SC arm demonstrated a statistically significant improvement in decisional self-efficacy (P=.05) and a reduction in the informed sub-score of decisional conflict (P=.003) at 3 months, with an improvement in preparation for decision making (P<.001) at 6 months. However, there was no improvement in terms of the change in knowledge, the total or other domain scores of decisional conflicts, or decisional self-efficacies at 6 months. The large amount of missing data from survey completion limited our ability to draw conclusions about the effectiveness of the patient decision aid. The patient decision aid met 61 of 62 benchmarks of the international patient decision aid collaboration standards for content, development process, and efficacy.Conclusions...

Objective Primary renal lymphoma (PRL) is defined as a non‐Hodgkin lymphoma (NHL) restricted to kidneys without extensive nodal disease. The literature on epidemiology and outcome in PRL is limited to case reports and small case series. Methods We utilized Surveillance, Epidemiology, and End Result database (1984‐2015) to study the demographic, clinical, and pathological characteristics of PRL. We conducted analysis to assess factors associated with overall survival (OS) and cause‐specific survival (CSS). Results A total of 599 (0.17% of all NHL) patients were eligible for the study. The age‐adjusted incidence was 0.035/100,000 population and is increasing. The median age was 72 years, and most of the patients were Caucasians and were males. Most of the patients had unilateral tumors, and diffuse large B‐cell lymphoma (DLBCL) was the most common histologic type. The median OS was 112 months, while median CSS was not reached. Age ≥ 60 years was the strongest independent risk factor for worse OS and CSS, while non‐DLBCL histology was associated with better OS and CSS. Discussion Primary renal lymphoma is a rare lymphoma with increasing incidence in more recent years. In this study, we describe demographic, clinical, and pathological characteristics of PRL and factors affecting survival among these patients.

Chimeric antigen receptor (CAR) T‐cell is the most recent version in the evolution of cellular therapy with promising responses, which has revolutionized the management of some hematological malignancies in the current times. As the clinical use has progressed rather rapidly since the first approval in 2017, toxicities beyond cytokine release syndrome and immune effector cell‐associated neurological syndrome have surfaced. Cytopenias are common in <30 days (“early”), 30–90 days (“short‐term”) as well as >90 days (“prolonged”); and have clinical implications to patient care as well as resource utilization. We review the details of etiology, factors associated with cytopenias, and management considerations for patients with cytopenias for each of these time‐frames. This would potentially serve as a clinical guide for hematological toxicity or CAR‐T‐OPENIA, which is commonly encountered with the use of CAR T‐cell therapy.

Being inherently different from any other lifesaving organ transplant, uterine transplantation does not aim at saving lives but supporting the possibility to generate life. Unlike the kidneys or the liver, the uterus is not specifically a vital organ. Given the non-lifesaving nature of this procedure, questions have been raised about its feasibility. The ethical dilemma revolves around whether it is worth placing two lives at risk related to surgery and immunosuppression, amongst others, to enable a woman with absolute uterine factor infertility to experience the presence of an organ enabling childbirth. In the year 2000, the first uterine transplantation, albeit unsuccessful, was performed in Saudi Arabia from where it has spread to the rest of the world including Sweden, the United States and now recently India. The procedure is, however, still in the preclinical stages and several ethical, legal, social and religious concerns are yet to be addressed before it can be integrated into the clinical setting as standard of care for women with absolute uterine factor infertility.

Viral infections are common causes of morbidity and mortality in patients undergoing hematopoietic stem cell transplantation (HSCT). In particular, allogeneic HSCT induces a profound immunocompromised state that may last up to 24 months post transplant, or longer in case of chronic graft vs host disease (GVHD). The common viruses affecting HSCT patients are HSV, VZV, CMV, EBV, adenovirus, HHV6, BKvirus and upper respiratory viruses such as influenza, parainfluenza, and RSV. These infections typically occur in three distinct phases: pre-engraftment, early postengraftment, and late postengraftment. This review will have two major sections, the first will discuss the epidemiology and natural history of different viral infections and second part will discuss preventive and therapeutic strategies among HSCT patients.