Cross-cultural assessment of the influence of the COVID-19 pandemic on the perceived mental health and medical experiences of persons with inherited bleeding disorders and their parents/guardians
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Cross-cultural assessment of the influence of the COVID-19 pandemic on the perceived mental health and medical experiences of persons with inherited bleeding disorders and their parents/guardians. / von Mackensen, Sylvia; Santaella, Maria E; Nichols, Cynthia D; Khair, Kate; Lambing, Angela Y; Witkop, Michelle L.
in: EXPERT REV HEMATOL, Jahrgang 16, Nr. 12, 2023, S. 1107-1123.Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Zeitschriftenaufsatz › Forschung › Begutachtung
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T1 - Cross-cultural assessment of the influence of the COVID-19 pandemic on the perceived mental health and medical experiences of persons with inherited bleeding disorders and their parents/guardians
AU - von Mackensen, Sylvia
AU - Santaella, Maria E
AU - Nichols, Cynthia D
AU - Khair, Kate
AU - Lambing, Angela Y
AU - Witkop, Michelle L
PY - 2023
Y1 - 2023
N2 - BACKGROUND: Objectives were to 1) assess COVID-19-associated medical and psychological challenges facing persons with inherited bleeding disorders (PIBD) and their parents/guardians (PG) in Germany, the US, and the UK; 2) describe similarities and differences among these countries; 3) identify needs and opportunities for intervention by patient advocacy organizations (PAGs).RESEARCH DESIGN & METHODS: A cross-sectional, international survey was conducted in three countries using validated psychometric instruments and investigator-developed items.RESULTS: Five hundred and four surveys were included. Significant differences between countries were found including experiences with medical care, specific thoughts, and concerns about COVID-19, anxiety, and other mental health measures, as well as resources used to cope with stress. Age, education, income, race, IBD diagnosis, PIBD vs. BD group, and gender had moderating effects on resources used. Communication with friends/relatives and use of PAG and HTCs as resources for information/coping decreased in all countries during the pandemic.CONCLUSIONS: There were similarities and differences between respondents across the country in the perceived impact of the pandemic, mental health scores, and strategies used to cope with stress. Recommendations: strategies to increase PAG access for PIBD and their PG during pandemics and natural disasters, ongoing assessment and adaptation to provide supportive resources to specific patient subgroups.
AB - BACKGROUND: Objectives were to 1) assess COVID-19-associated medical and psychological challenges facing persons with inherited bleeding disorders (PIBD) and their parents/guardians (PG) in Germany, the US, and the UK; 2) describe similarities and differences among these countries; 3) identify needs and opportunities for intervention by patient advocacy organizations (PAGs).RESEARCH DESIGN & METHODS: A cross-sectional, international survey was conducted in three countries using validated psychometric instruments and investigator-developed items.RESULTS: Five hundred and four surveys were included. Significant differences between countries were found including experiences with medical care, specific thoughts, and concerns about COVID-19, anxiety, and other mental health measures, as well as resources used to cope with stress. Age, education, income, race, IBD diagnosis, PIBD vs. BD group, and gender had moderating effects on resources used. Communication with friends/relatives and use of PAG and HTCs as resources for information/coping decreased in all countries during the pandemic.CONCLUSIONS: There were similarities and differences between respondents across the country in the perceived impact of the pandemic, mental health scores, and strategies used to cope with stress. Recommendations: strategies to increase PAG access for PIBD and their PG during pandemics and natural disasters, ongoing assessment and adaptation to provide supportive resources to specific patient subgroups.
KW - Humans
KW - COVID-19/epidemiology
KW - Mental Health
KW - Pandemics
KW - Cross-Sectional Studies
KW - Cross-Cultural Comparison
KW - Parents
U2 - 10.1080/17474086.2023.2277323
DO - 10.1080/17474086.2023.2277323
M3 - SCORING: Journal article
C2 - 38099480
VL - 16
SP - 1107
EP - 1123
JO - EXPERT REV HEMATOL
JF - EXPERT REV HEMATOL
SN - 1747-4086
IS - 12
ER -