1.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.
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.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.
4.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.
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.Comparative Evaluation of Popular Search Websites on Search Results and Reliability of Health Information between Korea and United States
Yoojung CHOI ; Kwanghyeon JUNG ; Jonghyun JEONG ; Hyunwoo CHAE ; Ju-Yeun LEE ; Jaekyu SHIN
Korean Journal of Clinical Pharmacy 2024;34(3):164-174
Background:
Health information should be accurate and of high quality. While search websites are widely used to obtain health information, search results can vary depending on the availability of information in each language and the algorithms of search websites. We compared the search results and their reliability on popular search websites in Korea and the United States.
Methods:
Using the most popular search websites in Korea (A) and the US (B), with B divided into KR and US domains, we evaluated the search results for three diseases (hypertension, diabetes, osteoporosis) and two medications (Lipitor, Norvasc). We compared the proportion of paid ads and website categories, as well as quality and accuracy using a validated scoring tool.
Results:
Search website A had a high proportion of paid ads (40.3%), compared to B KR (4.3%) and B US (0%). B US had the highest proportion of reliable websites (58.1%), followed by B KR (52.9%) and A (14.6%). B US had the highest median quality score (25) while A had the lowest (14).Additionally, B US had the highest accuracy (95%), followed by B KR (87.7%) and A (52.2%).
Conclusions
Our data suggest that health information provided by popular search website in Korea is inaccurate and of low quality compared with that provided by its counterpart in the US. Users should prioritize credible websites, be cautious of ads, and seek professional advice. In addition, jointefforts from the government, search websites, and healthcare professionals are needed to provide accurate online health information.
7.Comparative Evaluation of Popular Search Websites on Search Results and Reliability of Health Information between Korea and United States
Yoojung CHOI ; Kwanghyeon JUNG ; Jonghyun JEONG ; Hyunwoo CHAE ; Ju-Yeun LEE ; Jaekyu SHIN
Korean Journal of Clinical Pharmacy 2024;34(3):164-174
Background:
Health information should be accurate and of high quality. While search websites are widely used to obtain health information, search results can vary depending on the availability of information in each language and the algorithms of search websites. We compared the search results and their reliability on popular search websites in Korea and the United States.
Methods:
Using the most popular search websites in Korea (A) and the US (B), with B divided into KR and US domains, we evaluated the search results for three diseases (hypertension, diabetes, osteoporosis) and two medications (Lipitor, Norvasc). We compared the proportion of paid ads and website categories, as well as quality and accuracy using a validated scoring tool.
Results:
Search website A had a high proportion of paid ads (40.3%), compared to B KR (4.3%) and B US (0%). B US had the highest proportion of reliable websites (58.1%), followed by B KR (52.9%) and A (14.6%). B US had the highest median quality score (25) while A had the lowest (14).Additionally, B US had the highest accuracy (95%), followed by B KR (87.7%) and A (52.2%).
Conclusions
Our data suggest that health information provided by popular search website in Korea is inaccurate and of low quality compared with that provided by its counterpart in the US. Users should prioritize credible websites, be cautious of ads, and seek professional advice. In addition, jointefforts from the government, search websites, and healthcare professionals are needed to provide accurate online health information.
8.Comparative Evaluation of Popular Search Websites on Search Results and Reliability of Health Information between Korea and United States
Yoojung CHOI ; Kwanghyeon JUNG ; Jonghyun JEONG ; Hyunwoo CHAE ; Ju-Yeun LEE ; Jaekyu SHIN
Korean Journal of Clinical Pharmacy 2024;34(3):164-174
Background:
Health information should be accurate and of high quality. While search websites are widely used to obtain health information, search results can vary depending on the availability of information in each language and the algorithms of search websites. We compared the search results and their reliability on popular search websites in Korea and the United States.
Methods:
Using the most popular search websites in Korea (A) and the US (B), with B divided into KR and US domains, we evaluated the search results for three diseases (hypertension, diabetes, osteoporosis) and two medications (Lipitor, Norvasc). We compared the proportion of paid ads and website categories, as well as quality and accuracy using a validated scoring tool.
Results:
Search website A had a high proportion of paid ads (40.3%), compared to B KR (4.3%) and B US (0%). B US had the highest proportion of reliable websites (58.1%), followed by B KR (52.9%) and A (14.6%). B US had the highest median quality score (25) while A had the lowest (14).Additionally, B US had the highest accuracy (95%), followed by B KR (87.7%) and A (52.2%).
Conclusions
Our data suggest that health information provided by popular search website in Korea is inaccurate and of low quality compared with that provided by its counterpart in the US. Users should prioritize credible websites, be cautious of ads, and seek professional advice. In addition, jointefforts from the government, search websites, and healthcare professionals are needed to provide accurate online health information.
9.Comparative Evaluation of Popular Search Websites on Search Results and Reliability of Health Information between Korea and United States
Yoojung CHOI ; Kwanghyeon JUNG ; Jonghyun JEONG ; Hyunwoo CHAE ; Ju-Yeun LEE ; Jaekyu SHIN
Korean Journal of Clinical Pharmacy 2024;34(3):164-174
Background:
Health information should be accurate and of high quality. While search websites are widely used to obtain health information, search results can vary depending on the availability of information in each language and the algorithms of search websites. We compared the search results and their reliability on popular search websites in Korea and the United States.
Methods:
Using the most popular search websites in Korea (A) and the US (B), with B divided into KR and US domains, we evaluated the search results for three diseases (hypertension, diabetes, osteoporosis) and two medications (Lipitor, Norvasc). We compared the proportion of paid ads and website categories, as well as quality and accuracy using a validated scoring tool.
Results:
Search website A had a high proportion of paid ads (40.3%), compared to B KR (4.3%) and B US (0%). B US had the highest proportion of reliable websites (58.1%), followed by B KR (52.9%) and A (14.6%). B US had the highest median quality score (25) while A had the lowest (14).Additionally, B US had the highest accuracy (95%), followed by B KR (87.7%) and A (52.2%).
Conclusions
Our data suggest that health information provided by popular search website in Korea is inaccurate and of low quality compared with that provided by its counterpart in the US. Users should prioritize credible websites, be cautious of ads, and seek professional advice. In addition, jointefforts from the government, search websites, and healthcare professionals are needed to provide accurate online health information.
10.Two Cases of Erosive Adenomatosis of the Nipple
Jong Heon PARK ; Tae Woong SEUL ; Hyunwoo PARK ; Su Ji CHAE ; Hwa Jung RYU
Korean Journal of Dermatology 2024;62(1):46-49
Erosive adenomatosis of the nipple (EAN) is a rare benign entity that involves abnormal proliferation of the lactiferous ducts of the nipple and often presents with visible erosive lesions, erythema, or discharge. A 34-year-old female patient visited our clinic with erythematous patches and bloody discharge from the right nipple.Ultrasonography revealed a hypervascular lesion. A punch biopsy was performed, and histopathological examination confirmed the diagnosis of EAN. A 22-year-old female patient presented with a 4-year history of itchy erythematous eczematous patches with telangiectasia, crust, and bloody discharge in the areolar region. The punch biopsy results were consistent with those of EAN. The patient underwent total excision surgery. Herein, we report cases of EAN, which were difficult to differentiate from Paget's disease or nipple eczema, highlighting the need for clinicians to pay close attention.

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