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1. Empowering patients with sickle cell anemia and their families through innovative educational methods

Author

Riley Plett, Craig Eling, Sarah Tehseen, Kathleen Felton, Gina Martin, Vivian Sheppard, Megan Pegg, and Roona Sinha

Subjects
hematology, pediatric hematology/oncology, sickle cell anemia, sickle cell disease, Diseases of the blood and blood-forming organs, RC633-647.5
Abstract

Abstract Sickle cell disease (SCD) is a group of inherited blood disorders caused by a mutation in the beta subunit of hemoglobin (HbS). SCD will hereafter be referred to as sickle cell anemia (SCA) as this is the term our patients and their families prefer. There are approximately 5000 Canadians living with SCA including children. Pediatric SCA patient education can: improve knowledge, decrease hospitalization, improve medication possession ratio, lead to better SCA‐related functioning, and lower pain impact. Innovative educational materials were developed to improve knowledge and self‐efficacy regarding the illness management of patients and parents/guardians. Patients (n = 5; aged 8–18) with SCA and parents (n = 5) of patients (aged 0–18) were recruited via flyers sent directly to patients and distributed through partner patient organization Sickle Cell Awareness Network of Saskatchewan. Patient and parent focus groups were held separately over Zoom to receive feedback for the video. An additional interview was held for a participant that required a translation of the video. Audio recordings were transcribed using Zoom and Otter.ai. The coding of transcripts was facilitated by NVivo (QSR International Pty Ltd, 2022, release 1.6.2). The thematic analysis centered around SCA management concepts relevant to the research aims. Important themes that emerged included ‘Age Appropriateness’, ‘Empowerment’, ‘Knowledge Gaps’, ‘Linguistic Accessibility’, ‘Medication Adherence’, ‘Strength in Community’, and ‘Transition to Adult Care’. The video was well received, and “brought peace of mind”. Patient feedback was incorporated into the final version of the educational materials.

Published
2023
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2. Thrombosis and hemorrhage experienced by hospitalized children with SARS‐CoV‐2 infection or MIS‐C: Results of the PICNIC registry

Author

Sarah Tehseen, Suzan Williams, Joan Robinson, Shaun K. Morris, Ari Bitnun, Peter Gill, Tala El Tal, Ann Yeh, Carmen Yea, Rolando Ulloa‐Gutierrez, Helena Brenes‐Chacon, Adriana Yock‐Corrales, Gabriela Ivankovich‐Escoto, Alejandra Soriano‐Fallas, Jesse Papenburg, Marie‐Astrid Lefebvre, Rosie Scuccimarri, Alireza Nateghian, Behzad Haghighi Aski, Rachel Dwilow, Jared Bullard, Suzette Cooke, Lea Restivo, Alison Lopez, Manish Sadarangani, Ashley Roberts, Michelle Forbes, Nicole Le Saux, Jennifer Bowes, Rupeena Purewal, Janell Lautermilch, Ann Bayliss, Jacqueline K. Wong, Kirk Leifso, Cheryl Foo, Luc Panetta, Fatima Kakkar, Dominique Piche, Isabelle Viel‐Theriault, Joanna Merckx, and Lani Lieberman

Subjects
SARS-CoV-2, COVID-19, Hemorrhage, Thrombosis, Hematology, Systemic Inflammatory Response Syndrome, Oncology, Pediatrics, Perinatology and Child Health, Humans, Registries, Child, Cytokine Release Syndrome, Child, Hospitalized, Retrospective Studies
Abstract

Coagulopathy and thrombosis associated with SARS-CoV-2 infection are well defined in hospitalized adults and leads to adverse outcomes. Pediatric studies are limited.An international multicentered (n = 15) retrospective registry collected information on the clinical manifestations of SARS-CoV-2 and multisystem inflammatory syndrome (MIS-C) in hospitalized children from February 1, 2020 through May 31, 2021. This sub-study focused on coagulopathy. Study variables included patient demographics, comorbidities, clinical presentation, hospital course, laboratory parameters, management, and outcomes.Nine hundred eighty-five children were enrolled, of which 915 (93%) had clinical information available; 385 (42%) had symptomatic SARS-CoV-2 infection, 288 had MIS-C (31.4%), and 242 (26.4%) had SARS-CoV-2 identified incidentally. Ten children (1%) experienced thrombosis, 16 (1.7%) experienced hemorrhage, and two (0.2%) experienced both thrombosis and hemorrhage. Significantly prevalent prothrombotic comorbidities included congenital heart disease (p-value .007), respiratory support (p-value .006), central venous catheter (CVC) (p = .04) in children with primary SARS-CoV-2 and in those with MIS-C included respiratory support (p-value .03), obesity (p-value .002), and cytokine storm (p = .012). Comorbidities prevalent in children with hemorrhage included age10 years (p = .04), CVC (p = .03) in children with primary SARS-CoV-2 infection and in those with MIS-C encompassed thrombocytopenia (p = .001) and cytokine storm (p = .02). Eleven patients died (1.2%), with no deaths attributed to thrombosis or hemorrhage.Thrombosis and hemorrhage are uncommon events in children with SARS-CoV-2; largely experienced by those with pre-existing comorbidities. Understanding the complete spectrum of coagulopathy in children with SARS-CoV-2 infection requires ongoing research.

Published
2022
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