Browsing by Author "Hamiwka, Lorraine"

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    Distinct phenotypes of multisystem inflammatory syndrome in children: a cohort study
    (2023-04-12) Renson, Thomas; Forkert, Nils D.; Amador, Kimberly; Miettunen, Paivi; Parsons, Simon J.; Dhalla, Muhammed; Johnson, Nicole A.; Luca, Nadia; Schmeling, Heinrike; Stevenson, Rebeka; Twilt, Marinka; Hamiwka, Lorraine; Benseler, Susanne
    Abstract Background Multisystem inflammatory syndrome in children (MIS-C) is a severe disease with an unpredictable course and a substantial risk of cardiogenic shock. Our objectives were to (a) compare MIS-C phenotypes across the COVID-19 pandemic, (b) identify features associated with intensive care need and treatment with biologic agents. Methods Youth aged 0–18 years, fulfilling the World Health Organization case definition of MIS-C, and admitted to the Alberta Children’s Hospital during the first four waves of the COVID-19 pandemic (May 2020-December 2021) were included in this cohort study. Demographic, clinical, biochemical, imaging, and treatment data were captured. Results Fifty-seven MIS-C patients (median age 6 years, range 0–17) were included. Thirty patients (53%) required intensive care. Patients in the third or fourth wave (indicated as phase 2 of the pandemic) presented with higher peak ferritin (µg/l, median (IQR) = 1134 (409–1806) vs. 370 (249–629), P = 0.001), NT-proBNP (ng/l, median (IQR) = 12,217 (3013–27,161) vs. 3213 (1216–8483), P = 0.02) and D-dimer (mg/l, median (IQR) = 4.81 (2.24–5.37) vs. 2.01 (1.27–3.34), P = 0.004) levels, and higher prevalence of liver enzyme abnormalities (n(%) = 17 (68) vs. 11 (34), P = 0.02), hypoalbuminemia (n(%) = 24 (100) vs. 25 (81), P = 0.03) and thrombocytopenia (n(%) 18 (72) vs. 11 (34), P = 0.007) compared to patients in the first two waves (phase 1). These patients had a higher need of non-invasive/mechanical ventilation (n(%) 4 (16) vs. 0 (0), P = 0.03). Unsupervised clustering analyses classified 47% of the patients in the correct wave and 74% in the correct phase of the pandemic. NT-proBNP was the only significant contributor to the need for intensive care in all applied multivariate regression models. Treatment with biologic agents was significantly associated with peak CRP (mg/l (median, IQR = 240.9 (132.9-319.4) vs. 155.8 (101.0-200.7), P = 0.02) and ferritin levels (µg/l, median (IQR) = 1380 (509–1753) vs. 473 (280–296)). Conclusions MIS-C patients in a later stage of the pandemic displayed a more severe phenotype, reflecting the impact of distinct SARS-CoV-2 variants. NT-proBNP emerged as the most crucial feature associated with intensive care need, underscoring the importance of monitoring.
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    Health care stakeholder perspectives regarding the role of a patient navigator during transition to adult care
    (2019-06-17) Dimitropoulos, Gina; Morgan-Maver, Elizabeth; Allemang, Brooke; Schraeder, Kyleigh; Scott, Shannon D; Pinzon, Jorge; Andrew, Gail; Guilcher, Gregory; Hamiwka, Lorraine; Lang, Eddy; McBrien, Kerry; Nettel-Aguirre, Alberto; Pacaud, Daniele; Zwaigenbaum, Lonnie; Mackie, Andrew; Samuel, Susan
    Abstract Background Transition to adult care represents a vulnerable period for young people with special health care needs as they navigate multiple life transitions and developmental issues. Patient navigators are a promising intervention designed to facilitate the transfer from pediatric to adult care. However, consistent definitions, key tasks, roles and responsibilities are lacking in guiding the scope of practice and the implementation of patient navigators. Methods Fundamental qualitative description was utilized in this study to identify perceptions from health care providers about implementing a patient navigator service for young people with special health care needs in transition to adult care. A purposive sample of health care providers with a variety of backgrounds within pediatric and adult systems in Alberta, Canada were recruited. Semi-structured interviews with participants were analyzed using thematic analysis to inductively identify perceptions regarding the role of patient navigators. Results A total of 43 health care providers highlighted the need for a patient navigator service to encompass 4 key stages for young people with special health care needs transitioning from pediatric to adult services: (1) identification of young people with special health care needs and families requiring support, (2) preparation for transfer, (3) health system navigation and, (4) post-transfer support. Conclusions The results of this qualitative study provide guidance for the development of patient navigator interventions for young people with special health care needs, as well as provide support for current transition services offered across Canada.
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    Patient experience and healthcare priorities in childhood steroid sensitive nephrotic syndrome
    (2021-09) Okpere, Augustina Nwaka; Samuel, Susan; Elliott, Meghan; King-Shier, Kathryn; Hamiwka, Lorraine
    Childhood idiopathic steroid sensitive nephrotic syndrome (SSNS) is characterized by sudden and unexpected onset of body swelling, massive proteinuria and hypoalbuminemia. The chronic recurrent relapses and side effects of its treatment can impact patients’ and caregivers’ experiences of the disease. The aims of this qualitative study were to explore the experiences and healthcare priorities of children with SSNS and their caregivers. We interviewed 28 participants that comprised 10 children aged 9 to18 years (6 boys and 4 girls) and 18 caregivers over the internet on Microsoft Teams between January and April 2021. Using qualitative description and thematic analysis, we identified three themes related to the diagnostic journey of childhood nephrotic syndrome (unexpected distressing symptoms, elusiveness of diagnosis and confronting the diagnosis) and three themes related to the experiences of children living with SSNS and their caregivers (disruption of normalcy, regaining control and dependable social support system). Four actionable needs and care priorities of participants were identified: desire to be heard, understanding the cause of nephrotic syndrome, alleviating the burden of steroid regimen and enhanced social support availability. Our study provides insights into several strategies that healthcare professional could adopt to improve the diagnostic experience of children and their caregivers in search of a diagnosis of nephrotic syndrome and care of patients and their families. Also, our findings have the potential to inform the design and conduct of future research in priority setting and treatment of childhood SSNS.