1.Bridging the Gap in Epilepsy Care for Refugees in Nakivale Settlement, Uganda
Hyunwoo BAE ; Hyunsuk LIM ; Ariane Dora NITEKA ; Yun-Jeong LEE ; Soonhak KWON
Annals of Child Neurology 2025;33(2):56-65
Purpose:
The global increase in forcibly displaced people, combined with insufficient aid, leaves many—in particular, people with epilepsy—in a dire medical state. Our study aimed to understand the demographics and clinical features of epilepsy in the Nakivale refugee settlement and to highlight our intervention through the ‘CARE FOR ALL’ project, which will run for 5 years.
Methods:
Between August 2022 and May 2023, we conducted four outreach visits across three locations in Uganda, consulting 161 patients. After excluding incomplete data, we analyzed the medical records of 81 epilepsy cases.
Results:
Of the 81 patients, most were male (65.4%), under 18 years old (77.8%), had low education levels (93.8%), and were predominantly Congolese (58.0%). The majority experienced focal onset seizures (51.8%), and epilepsy began before the age of one in 28.4% of patients. All patients had comorbidities, with intellectual impairment (70.4%) and cerebral palsy (27.2%) being the most common. Identified risk factors included antenatal complications, central nervous system infections, and war-related injuries. Before our intervention, the treatment gap was 76.5%; this was reduced to 0% after the project, which also significantly decreased seizure frequency (seizure freedom 30.9%, P<0.05). Carbamazepine was the most common antiseizure medication used (59.2%).
Conclusion
Refugees with epilepsy face major barriers to care that negatively impact their quality of life. A coordinated effort by governments and health agencies is crucial to overcome these challenges and improve outcomes for displaced individuals with epilepsy.
2.Impact of Nusinersen on the Health-Related Quality of Life and Caregiver Burden in Patients with Spinal Muscular Atrophy with Symptom Onset before the Age of 6 Months
Yun Jeong LEE ; Hyunwoo BAE ; Young Kyu SHIM ; Jae So CHO ; Jong Hee CHAE ; Soonhak KWON
Annals of Child Neurology 2025;33(2):39-47
Purpose:
This study investigated the impact of nusinersen on health-related quality of life (HRQoL), functional performance, and caregiver burden in patients with infantile-onset spinal muscular atrophy (SMA), addressing a growing interest in disease-modifying treatments.
Methods:
A 14-month observational study was conducted to evaluate changes in HRQoL and functional performance using the Pediatric Quality of Life Inventory (PedsQL) Infant Scales and the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT). Caregiver burden was assessed through the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND). Motor function was evaluated using the Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND). Correlations between CHOP INTEND scores, functional performance, and caregiver burden were analyzed.
Results:
Eight patients with infantile-onset SMA and their caregivers participated, with a median treatment initiation age of 4.6 months (range, 1.1 to 15.1). CHOP INTEND scores showed significant improvement (P<0.001), whereas all PedsQL Infant Scale scores declined. Conversely, the PEDI-CAT revealed significant enhancements in daily activities, mobility, and social-cognitive domains (all P<0.001). Caregiver burden lessened across most dimensions (P<0.001), with the exception of the time-related burden (P=0.731). Higher CHOP INTEND scores correlated with improvements in PEDI-CAT domains and a reduction in caregiver burden related to sitting/play and transfer activities.
Conclusion
The study demonstrates the positive effects of nusinersen on functional performance and caregiver burden in patients with infantile-onset SMA. However, discrepancies were observed in HRQoL outcomes, suggesting a need for further research that includes SMA-specific outcome measures to comprehensively assess the treatment's impact on patients' lives.
3.Comparison of Helical Interwoven Nitinol Stent Placement Versus Balloon Angioplasty for Arteriovenous Dialysis Graft Malfunction Caused by Stenosis of the Venous Anastomosis Site
Jae Hwan HYUN ; Doo Ri KIM ; In Chul NAM ; Jeong Sub LEE ; Jeong Jae KIM ; Hyunwoo KIM ; Miyeon KIM
Journal of the Korean Society of Radiology 2025;86(2):249-258
Purpose:
The study aimed to compare the differences in patency between helical interwoven nitinol stents and balloon angioplasty in patients with arteriovenous graft (AVG) malfunction caused by venous anastomosis stenosis.
Materials and Methods:
This retrospective study included patients who underwent helical interwoven nitinol stent placement (n = 15) or balloon angioplasty (n = 25) between January 2016 and September 2021. The primary and secondary patency rates were compared between the two groups.
Results:
Dialysis was possible post-intervention in all patients who showed no specific complications, including stent fracture. The average primary patency of the stent placement group was longer than that of the balloon angioplasty group but did not differ significantly (8.5 vs. 6.3 months, p = 0.319). The mean secondary patency period was 17.6 months in the stent placement group, which was shorter than that in the balloon angioplasty group (18.8 months); however, this difference was also not statistically significant (p = 0.660).
Conclusion
Helical interwoven nitinol stents could maintain patency in patients with AVG malfunction caused by venous anastomosis stenosis, but they did not improve patency compared to balloon angioplasty.
4.Bridging the Gap in Epilepsy Care for Refugees in Nakivale Settlement, Uganda
Hyunwoo BAE ; Hyunsuk LIM ; Ariane Dora NITEKA ; Yun-Jeong LEE ; Soonhak KWON
Annals of Child Neurology 2025;33(2):56-65
Purpose:
The global increase in forcibly displaced people, combined with insufficient aid, leaves many—in particular, people with epilepsy—in a dire medical state. Our study aimed to understand the demographics and clinical features of epilepsy in the Nakivale refugee settlement and to highlight our intervention through the ‘CARE FOR ALL’ project, which will run for 5 years.
Methods:
Between August 2022 and May 2023, we conducted four outreach visits across three locations in Uganda, consulting 161 patients. After excluding incomplete data, we analyzed the medical records of 81 epilepsy cases.
Results:
Of the 81 patients, most were male (65.4%), under 18 years old (77.8%), had low education levels (93.8%), and were predominantly Congolese (58.0%). The majority experienced focal onset seizures (51.8%), and epilepsy began before the age of one in 28.4% of patients. All patients had comorbidities, with intellectual impairment (70.4%) and cerebral palsy (27.2%) being the most common. Identified risk factors included antenatal complications, central nervous system infections, and war-related injuries. Before our intervention, the treatment gap was 76.5%; this was reduced to 0% after the project, which also significantly decreased seizure frequency (seizure freedom 30.9%, P<0.05). Carbamazepine was the most common antiseizure medication used (59.2%).
Conclusion
Refugees with epilepsy face major barriers to care that negatively impact their quality of life. A coordinated effort by governments and health agencies is crucial to overcome these challenges and improve outcomes for displaced individuals with epilepsy.
5.Impact of Nusinersen on the Health-Related Quality of Life and Caregiver Burden in Patients with Spinal Muscular Atrophy with Symptom Onset before the Age of 6 Months
Yun Jeong LEE ; Hyunwoo BAE ; Young Kyu SHIM ; Jae So CHO ; Jong Hee CHAE ; Soonhak KWON
Annals of Child Neurology 2025;33(2):39-47
Purpose:
This study investigated the impact of nusinersen on health-related quality of life (HRQoL), functional performance, and caregiver burden in patients with infantile-onset spinal muscular atrophy (SMA), addressing a growing interest in disease-modifying treatments.
Methods:
A 14-month observational study was conducted to evaluate changes in HRQoL and functional performance using the Pediatric Quality of Life Inventory (PedsQL) Infant Scales and the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT). Caregiver burden was assessed through the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND). Motor function was evaluated using the Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND). Correlations between CHOP INTEND scores, functional performance, and caregiver burden were analyzed.
Results:
Eight patients with infantile-onset SMA and their caregivers participated, with a median treatment initiation age of 4.6 months (range, 1.1 to 15.1). CHOP INTEND scores showed significant improvement (P<0.001), whereas all PedsQL Infant Scale scores declined. Conversely, the PEDI-CAT revealed significant enhancements in daily activities, mobility, and social-cognitive domains (all P<0.001). Caregiver burden lessened across most dimensions (P<0.001), with the exception of the time-related burden (P=0.731). Higher CHOP INTEND scores correlated with improvements in PEDI-CAT domains and a reduction in caregiver burden related to sitting/play and transfer activities.
Conclusion
The study demonstrates the positive effects of nusinersen on functional performance and caregiver burden in patients with infantile-onset SMA. However, discrepancies were observed in HRQoL outcomes, suggesting a need for further research that includes SMA-specific outcome measures to comprehensively assess the treatment's impact on patients' lives.
6.Bridging the Gap in Epilepsy Care for Refugees in Nakivale Settlement, Uganda
Hyunwoo BAE ; Hyunsuk LIM ; Ariane Dora NITEKA ; Yun-Jeong LEE ; Soonhak KWON
Annals of Child Neurology 2025;33(2):56-65
Purpose:
The global increase in forcibly displaced people, combined with insufficient aid, leaves many—in particular, people with epilepsy—in a dire medical state. Our study aimed to understand the demographics and clinical features of epilepsy in the Nakivale refugee settlement and to highlight our intervention through the ‘CARE FOR ALL’ project, which will run for 5 years.
Methods:
Between August 2022 and May 2023, we conducted four outreach visits across three locations in Uganda, consulting 161 patients. After excluding incomplete data, we analyzed the medical records of 81 epilepsy cases.
Results:
Of the 81 patients, most were male (65.4%), under 18 years old (77.8%), had low education levels (93.8%), and were predominantly Congolese (58.0%). The majority experienced focal onset seizures (51.8%), and epilepsy began before the age of one in 28.4% of patients. All patients had comorbidities, with intellectual impairment (70.4%) and cerebral palsy (27.2%) being the most common. Identified risk factors included antenatal complications, central nervous system infections, and war-related injuries. Before our intervention, the treatment gap was 76.5%; this was reduced to 0% after the project, which also significantly decreased seizure frequency (seizure freedom 30.9%, P<0.05). Carbamazepine was the most common antiseizure medication used (59.2%).
Conclusion
Refugees with epilepsy face major barriers to care that negatively impact their quality of life. A coordinated effort by governments and health agencies is crucial to overcome these challenges and improve outcomes for displaced individuals with epilepsy.
7.Impact of Nusinersen on the Health-Related Quality of Life and Caregiver Burden in Patients with Spinal Muscular Atrophy with Symptom Onset before the Age of 6 Months
Yun Jeong LEE ; Hyunwoo BAE ; Young Kyu SHIM ; Jae So CHO ; Jong Hee CHAE ; Soonhak KWON
Annals of Child Neurology 2025;33(2):39-47
Purpose:
This study investigated the impact of nusinersen on health-related quality of life (HRQoL), functional performance, and caregiver burden in patients with infantile-onset spinal muscular atrophy (SMA), addressing a growing interest in disease-modifying treatments.
Methods:
A 14-month observational study was conducted to evaluate changes in HRQoL and functional performance using the Pediatric Quality of Life Inventory (PedsQL) Infant Scales and the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT). Caregiver burden was assessed through the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND). Motor function was evaluated using the Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND). Correlations between CHOP INTEND scores, functional performance, and caregiver burden were analyzed.
Results:
Eight patients with infantile-onset SMA and their caregivers participated, with a median treatment initiation age of 4.6 months (range, 1.1 to 15.1). CHOP INTEND scores showed significant improvement (P<0.001), whereas all PedsQL Infant Scale scores declined. Conversely, the PEDI-CAT revealed significant enhancements in daily activities, mobility, and social-cognitive domains (all P<0.001). Caregiver burden lessened across most dimensions (P<0.001), with the exception of the time-related burden (P=0.731). Higher CHOP INTEND scores correlated with improvements in PEDI-CAT domains and a reduction in caregiver burden related to sitting/play and transfer activities.
Conclusion
The study demonstrates the positive effects of nusinersen on functional performance and caregiver burden in patients with infantile-onset SMA. However, discrepancies were observed in HRQoL outcomes, suggesting a need for further research that includes SMA-specific outcome measures to comprehensively assess the treatment's impact on patients' lives.
8.Comparison of Helical Interwoven Nitinol Stent Placement Versus Balloon Angioplasty for Arteriovenous Dialysis Graft Malfunction Caused by Stenosis of the Venous Anastomosis Site
Jae Hwan HYUN ; Doo Ri KIM ; In Chul NAM ; Jeong Sub LEE ; Jeong Jae KIM ; Hyunwoo KIM ; Miyeon KIM
Journal of the Korean Society of Radiology 2025;86(2):249-258
Purpose:
The study aimed to compare the differences in patency between helical interwoven nitinol stents and balloon angioplasty in patients with arteriovenous graft (AVG) malfunction caused by venous anastomosis stenosis.
Materials and Methods:
This retrospective study included patients who underwent helical interwoven nitinol stent placement (n = 15) or balloon angioplasty (n = 25) between January 2016 and September 2021. The primary and secondary patency rates were compared between the two groups.
Results:
Dialysis was possible post-intervention in all patients who showed no specific complications, including stent fracture. The average primary patency of the stent placement group was longer than that of the balloon angioplasty group but did not differ significantly (8.5 vs. 6.3 months, p = 0.319). The mean secondary patency period was 17.6 months in the stent placement group, which was shorter than that in the balloon angioplasty group (18.8 months); however, this difference was also not statistically significant (p = 0.660).
Conclusion
Helical interwoven nitinol stents could maintain patency in patients with AVG malfunction caused by venous anastomosis stenosis, but they did not improve patency compared to balloon angioplasty.
9.Bridging the Gap in Epilepsy Care for Refugees in Nakivale Settlement, Uganda
Hyunwoo BAE ; Hyunsuk LIM ; Ariane Dora NITEKA ; Yun-Jeong LEE ; Soonhak KWON
Annals of Child Neurology 2025;33(2):56-65
Purpose:
The global increase in forcibly displaced people, combined with insufficient aid, leaves many—in particular, people with epilepsy—in a dire medical state. Our study aimed to understand the demographics and clinical features of epilepsy in the Nakivale refugee settlement and to highlight our intervention through the ‘CARE FOR ALL’ project, which will run for 5 years.
Methods:
Between August 2022 and May 2023, we conducted four outreach visits across three locations in Uganda, consulting 161 patients. After excluding incomplete data, we analyzed the medical records of 81 epilepsy cases.
Results:
Of the 81 patients, most were male (65.4%), under 18 years old (77.8%), had low education levels (93.8%), and were predominantly Congolese (58.0%). The majority experienced focal onset seizures (51.8%), and epilepsy began before the age of one in 28.4% of patients. All patients had comorbidities, with intellectual impairment (70.4%) and cerebral palsy (27.2%) being the most common. Identified risk factors included antenatal complications, central nervous system infections, and war-related injuries. Before our intervention, the treatment gap was 76.5%; this was reduced to 0% after the project, which also significantly decreased seizure frequency (seizure freedom 30.9%, P<0.05). Carbamazepine was the most common antiseizure medication used (59.2%).
Conclusion
Refugees with epilepsy face major barriers to care that negatively impact their quality of life. A coordinated effort by governments and health agencies is crucial to overcome these challenges and improve outcomes for displaced individuals with epilepsy.
10.Impact of Nusinersen on the Health-Related Quality of Life and Caregiver Burden in Patients with Spinal Muscular Atrophy with Symptom Onset before the Age of 6 Months
Yun Jeong LEE ; Hyunwoo BAE ; Young Kyu SHIM ; Jae So CHO ; Jong Hee CHAE ; Soonhak KWON
Annals of Child Neurology 2025;33(2):39-47
Purpose:
This study investigated the impact of nusinersen on health-related quality of life (HRQoL), functional performance, and caregiver burden in patients with infantile-onset spinal muscular atrophy (SMA), addressing a growing interest in disease-modifying treatments.
Methods:
A 14-month observational study was conducted to evaluate changes in HRQoL and functional performance using the Pediatric Quality of Life Inventory (PedsQL) Infant Scales and the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT). Caregiver burden was assessed through the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND). Motor function was evaluated using the Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND). Correlations between CHOP INTEND scores, functional performance, and caregiver burden were analyzed.
Results:
Eight patients with infantile-onset SMA and their caregivers participated, with a median treatment initiation age of 4.6 months (range, 1.1 to 15.1). CHOP INTEND scores showed significant improvement (P<0.001), whereas all PedsQL Infant Scale scores declined. Conversely, the PEDI-CAT revealed significant enhancements in daily activities, mobility, and social-cognitive domains (all P<0.001). Caregiver burden lessened across most dimensions (P<0.001), with the exception of the time-related burden (P=0.731). Higher CHOP INTEND scores correlated with improvements in PEDI-CAT domains and a reduction in caregiver burden related to sitting/play and transfer activities.
Conclusion
The study demonstrates the positive effects of nusinersen on functional performance and caregiver burden in patients with infantile-onset SMA. However, discrepancies were observed in HRQoL outcomes, suggesting a need for further research that includes SMA-specific outcome measures to comprehensively assess the treatment's impact on patients' lives.

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