Use of the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) in Spinal Muscular Atrophy
<b>Background</b>: Spinal muscular atrophy (SMA) has a remarkable impact on function and participation. Subsequently, the caregivers of individuals with SMA are impacted as well. Providers and the SMA community should be aware of the presence of and likely expectations for the existence...
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| Format: | Article |
| Language: | English |
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MDPI AG
2024-02-01
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| Series: | Journal of Clinical Medicine |
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| Online Access: | https://www.mdpi.com/2077-0383/13/4/921 |
| _version_ | 1797297910043377664 |
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| author | Laurey Brown Katie Hoffman Chiara Corbo-Galli Siyuan Dong Katelyn Zumpf Christa Weigel Colleen Blomgren Hannah Munson Jessa Bidwell Vamshi Rao Nancy L. Kuntz Abigail Schwaede Kristin J. Krosschell |
| author_facet | Laurey Brown Katie Hoffman Chiara Corbo-Galli Siyuan Dong Katelyn Zumpf Christa Weigel Colleen Blomgren Hannah Munson Jessa Bidwell Vamshi Rao Nancy L. Kuntz Abigail Schwaede Kristin J. Krosschell |
| author_sort | Laurey Brown |
| collection | DOAJ |
| description | <b>Background</b>: Spinal muscular atrophy (SMA) has a remarkable impact on function and participation. Subsequently, the caregivers of individuals with SMA are impacted as well. Providers and the SMA community should be aware of the presence of and likely expectations for the existence of caregiver burden. <b>Methods</b>: The Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) quantifies caregivers’ perceptions of function and quality of life pertaining to time, finance and emotion. Analyses were conducted among SMA types and ambulatory and ventilatory status. Participants with SMA had varying ranges of function and were on pharmaceutical treatment. Total ACEND score, longitudinal change in total ACEND score, total quality of life (QOL) score, change in total QOL score and subdomains for QOL, including time, emotion and finance, were all explored. <b>Results</b>: Overall, the ACEND demonstrated discriminant validity and some observed trends. Total ACEND scores improved for caregivers of those with SMA 2, remained stable longitudinally for caregivers of those with SMA 1 and 3 and were not influenced by ventilation status. The caregivers of individuals with SMA 1 had the lowest total quality of life (QOL) score, as did the caregivers of non-ambulatory individuals and those requiring assisted ventilation. Longitudinally, there were no changes in total QOL between caregivers of individuals with different SMA types or ambulatory or ventilation status. There were some differences in emotional needs, but no differences in financial impact between the caregivers of individuals with different types of SMA or ambulatory and ventilatory status. <b>Conclusions</b>: With this information enlightening the presence of caregiver burden and expected changes in burden with pharmaceutical treatment, providers, third party payors and the SMA community at large can better assist, equip and empower those providing the necessary assistance to enable the lives of those with SMA. |
| first_indexed | 2024-03-07T22:28:10Z |
| format | Article |
| id | doaj.art-f457394159de41f4b3d487a1263a4eb2 |
| institution | Directory Open Access Journal |
| issn | 2077-0383 |
| language | English |
| last_indexed | 2024-03-07T22:28:10Z |
| publishDate | 2024-02-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Journal of Clinical Medicine |
| spelling | doaj.art-f457394159de41f4b3d487a1263a4eb22024-02-23T15:21:47ZengMDPI AGJournal of Clinical Medicine2077-03832024-02-0113492110.3390/jcm13040921Use of the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) in Spinal Muscular AtrophyLaurey Brown0Katie Hoffman1Chiara Corbo-Galli2Siyuan Dong3Katelyn Zumpf4Christa Weigel5Colleen Blomgren6Hannah Munson7Jessa Bidwell8Vamshi Rao9Nancy L. Kuntz10Abigail Schwaede11Kristin J. Krosschell12Department of Rehabilitation Services, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL 60611, USADepartment of Rehabilitation Services, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL 60611, USAWeinberg College of Arts and Sciences, Northwestern University, Evanston, IL 60208, USADepartment of Preventive Medicine, Division of Biostatistics, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USADepartment of Preventive Medicine, Division of Biostatistics, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USADepartment of Rehabilitation Services, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL 60611, USADepartment of Rehabilitation Services, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL 60611, USADivision of Neurology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL 60611, USADivision of Neurology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL 60611, USADivision of Neurology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL 60611, USADivision of Neurology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL 60611, USADivision of Neurology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL 60611, USADepartment of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USA<b>Background</b>: Spinal muscular atrophy (SMA) has a remarkable impact on function and participation. Subsequently, the caregivers of individuals with SMA are impacted as well. Providers and the SMA community should be aware of the presence of and likely expectations for the existence of caregiver burden. <b>Methods</b>: The Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) quantifies caregivers’ perceptions of function and quality of life pertaining to time, finance and emotion. Analyses were conducted among SMA types and ambulatory and ventilatory status. Participants with SMA had varying ranges of function and were on pharmaceutical treatment. Total ACEND score, longitudinal change in total ACEND score, total quality of life (QOL) score, change in total QOL score and subdomains for QOL, including time, emotion and finance, were all explored. <b>Results</b>: Overall, the ACEND demonstrated discriminant validity and some observed trends. Total ACEND scores improved for caregivers of those with SMA 2, remained stable longitudinally for caregivers of those with SMA 1 and 3 and were not influenced by ventilation status. The caregivers of individuals with SMA 1 had the lowest total quality of life (QOL) score, as did the caregivers of non-ambulatory individuals and those requiring assisted ventilation. Longitudinally, there were no changes in total QOL between caregivers of individuals with different SMA types or ambulatory or ventilation status. There were some differences in emotional needs, but no differences in financial impact between the caregivers of individuals with different types of SMA or ambulatory and ventilatory status. <b>Conclusions</b>: With this information enlightening the presence of caregiver burden and expected changes in burden with pharmaceutical treatment, providers, third party payors and the SMA community at large can better assist, equip and empower those providing the necessary assistance to enable the lives of those with SMA.https://www.mdpi.com/2077-0383/13/4/921spinal muscular atrophycaregiver burdenquality of lifeneuromuscularpediatricACEND |
| spellingShingle | Laurey Brown Katie Hoffman Chiara Corbo-Galli Siyuan Dong Katelyn Zumpf Christa Weigel Colleen Blomgren Hannah Munson Jessa Bidwell Vamshi Rao Nancy L. Kuntz Abigail Schwaede Kristin J. Krosschell Use of the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) in Spinal Muscular Atrophy Journal of Clinical Medicine spinal muscular atrophy caregiver burden quality of life neuromuscular pediatric ACEND |
| title | Use of the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) in Spinal Muscular Atrophy |
| title_full | Use of the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) in Spinal Muscular Atrophy |
| title_fullStr | Use of the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) in Spinal Muscular Atrophy |
| title_full_unstemmed | Use of the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) in Spinal Muscular Atrophy |
| title_short | Use of the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) in Spinal Muscular Atrophy |
| title_sort | use of the assessment of caregiver experience with neuromuscular disease acend in spinal muscular atrophy |
| topic | spinal muscular atrophy caregiver burden quality of life neuromuscular pediatric ACEND |
| url | https://www.mdpi.com/2077-0383/13/4/921 |
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