Naushin S. Sholapur

Platelet transfusions for critically ill patients with thrombocytopenia

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Effect of a thrombopoietin receptor agonist on use of intravenous immune globulin in patients with immune thrombocytopenia

Thrombopoietin receptor agonists are new treatments for patients with chronic immune thrombocytopenia (ITP). How one of these agent, romiplostim, has impacted practice patterns, especially the use of intravenous immune globulin (IVIG), has not been evaluated outside of clinical trials.

Implementation and public acceptability: lessons from food irradiation and how they might apply to pathogen reduction in blood products

The issues around food irradiation (FI) have both similarities and differences to pathogen reduction (PR) in blood products. We performed a systematic search of the FI literature to identify lessons that could help to inform the implementation of pathogen reduction technology for blood products.

Treatment decision-making among Canadian youth with severe haemophilia: a qualitative approach

The first generation of young men using primary prophylaxis is coming of age. Important questions regarding the management of severe haemophilia with prophylaxis persist: Can prophylaxis be stopped? At what age? To what effect? Can the regimen be individualized? The reasons why some individuals discontinue or poorly comply with prophylaxis are not well understood. These issues have been explored using predominantly quantitative rese‐arch approaches, yielding little insight into treatment decision‐making from the perspectives of persons with haemophilia (PWH). Positioning the PWH as a source of expertise about their condition and its management, we undertook a qualitative study: (i) to explore and understand the lived experience of young men with severe haemophilia A or B and (ii) to identify the factors and inter‐relationships between factors that affect young mens treatment decision‐making. This manuscript reports primarily on the second objective. A modified Straussian, grounded theory methodology was used for data collection (interviews) and preliminary analysis. The study sample, youth aged 15–29, with severe haemophilia A or B, was chosen selectively and recruited through three Canadian Haemophilia Treatment Centres. We found treatment decision‐making to be multi‐factorial and used the Framework method to analyze the inter‐relationships between factors. A typology of four distinct approaches to treatment was identified: lifestyle routine prophylaxis, situational prophylaxis, strict routine prophylaxis and no prophylaxis. Standardized treatment definitions (i.e.: ‘primary’ and ‘secondary’, ‘prophylaxis’) do not adequately describe the ways participants treat. Naming the variation of approaches documented in this study can improve PWH/provider communication, treatment planning and education.

Understanding stakeholder important outcomes and perceptions of equity, acceptability and feasibility of a care model for haemophilia management in the US: a qualitative study

Care for persons with haemophilia (PWH) is most commonly delivered through the integrated care model used by Hemophilia Treatment Centers (HTCs). Although this model is widely accepted as the gold standard for the management of haemophilia; there is little evidence comparing different care models.

A survey of patients with haemophilia to understand how they track product used at home

Record keeping among individuals who manage haemophilia at home is an essential tool of communication between patient and Haemophilia Treatment Center (HTC). Complete records help HTCs monitor patients, their use of factor and ensure treatment is optimal. HTCs provide patients with a number of methods to track infusion practices. The study objectives were to: [1] determine the current methods of record keeping; [2] identify previous methods of record keeping; [3] understand the strengths and weaknesses associated with each method; and [4] gather suggestions for improvement. Survey methods were used to address the research objectives. Of the 83 patients in the Hamilton‐Niagara region who received the survey distributed through the local HTC, 51 returned surveys were included into the analysis. Descriptive statistics were used. Results indicate individuals with haemophilia record infusion practices using: paper diaries, excel spreadsheets, hand‐held PDAs and/or the online EZ‐Log Web Client. The most popular method of record keeping was EZ‐Log (45.1%) followed by paper diaries (35.2%). Advantages to using paper methods include the visual tracking of information and retaining hardcopies. The disadvantage was the inconvenience of physically submitting the records monthly. Advantages to using the online EZ‐Log Web Client included ease of use and improved accuracy. The primary disadvantage was technical errors that were difficult to troubleshoot. Record keeping practices among individuals with haemophilia seem to vary according to personal preference and convenience. Respondents suggested that saving infusion history, incorporating barcode scanners or a copy and paste function could improve electronic methods.

An evaluation of overall effectiveness and treatment satisfaction with intravenous immunoglobulin among patients with immune thrombocytopenia

A global assessment of patient satisfaction that considers therapeutic effect, toxicities, and convenience is needed to evaluate the acceptability of intravenous immunoglobulin (IVIG) as a treatment for patients with immune thrombocytopenia (ITP).