Effects of the COVID-19 Pandemic on SMA Screening and Care: Physician and Community Insights
Abstract Objective As part of efforts to reduce diagnostic delays and enhance clinical trials, Cure SMA evaluated the effects of COVID-19 on SMA care and clinical trial conduct. Introduction Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disease characterized by progressive, p...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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Adis, Springer Healthcare
2023-06-01
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| Series: | Neurology and Therapy |
| Subjects: | |
| Online Access: | https://doi.org/10.1007/s40120-023-00516-2 |
| _version_ | 1797736387897720832 |
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| author | Mary Curry Ilse Peterson Lisa Belter Fatou Sarr Sarah Whitmire Mary Schroth Jill Jarecki |
| author_facet | Mary Curry Ilse Peterson Lisa Belter Fatou Sarr Sarah Whitmire Mary Schroth Jill Jarecki |
| author_sort | Mary Curry |
| collection | DOAJ |
| description | Abstract Objective As part of efforts to reduce diagnostic delays and enhance clinical trials, Cure SMA evaluated the effects of COVID-19 on SMA care and clinical trial conduct. Introduction Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disease characterized by progressive, potentially debilitating muscle weakness and atrophy. Uninterrupted access to early diagnosis, disease-modifying treatment, and care for SMA is vital to avoiding irreversible motor neuron death and achieving optimal patient outcomes. Methods Two surveys were conducted: a provider survey and a community survey. The Provider Impact Survey, distributed from November 24, 2020, through March 8, 2021, assessed COVID-19’s effects on referrals for evaluation of suspected SMA, cancellations and delays of SMA-related care, and clinical trials. The Community Impact Survey was fielded in three waves between April 7, 2020 and July 19, 2021, in tandem with Cure SMA COVID-19 support programs. Results A total of 48 completed provider surveys (22 from care sites, 26 from care-and-trial sites) reflected decreases in referrals for suspected SMA, increases in appointment cancellations and delays, and patient reluctance to attend in-person visits due to COVID-19. One-third of care-and-trial sites reported trial recruitment delays, and one-quarter reported pausing trial enrollment. Results of the Community Impact Survey, completed by 2047 individuals, showed similar disruptions, with 55% reporting changes or limitations in accessing essential SMA-related services. Conclusions This research evaluates the pandemic’s interruption of SMA care and research. These insights can help mitigate and increase preparedness for future disruptive events. Expanded use of virtual tools including telehealth and remote monitoring may enhance continuity and access. However, additional research is required to evaluate their effectiveness. While this research was specific to SMA, its findings may have relevance for other patient communities. |
| first_indexed | 2024-03-12T13:12:05Z |
| format | Article |
| id | doaj.art-1648f62f8164406c83ecaabe057ea0b5 |
| institution | Directory Open Access Journal |
| issn | 2193-8253 2193-6536 |
| language | English |
| last_indexed | 2024-03-12T13:12:05Z |
| publishDate | 2023-06-01 |
| publisher | Adis, Springer Healthcare |
| record_format | Article |
| series | Neurology and Therapy |
| spelling | doaj.art-1648f62f8164406c83ecaabe057ea0b52023-08-27T11:32:11ZengAdis, Springer HealthcareNeurology and Therapy2193-82532193-65362023-06-011251631164710.1007/s40120-023-00516-2Effects of the COVID-19 Pandemic on SMA Screening and Care: Physician and Community InsightsMary Curry0Ilse Peterson1Lisa Belter2Fatou Sarr3Sarah Whitmire4Mary Schroth5Jill Jarecki6Cure SMAFaegre Drinker Biddle and Reath LLPCure SMAFaegre Drinker Biddle and Reath LLPCure SMACure SMACure SMAAbstract Objective As part of efforts to reduce diagnostic delays and enhance clinical trials, Cure SMA evaluated the effects of COVID-19 on SMA care and clinical trial conduct. Introduction Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disease characterized by progressive, potentially debilitating muscle weakness and atrophy. Uninterrupted access to early diagnosis, disease-modifying treatment, and care for SMA is vital to avoiding irreversible motor neuron death and achieving optimal patient outcomes. Methods Two surveys were conducted: a provider survey and a community survey. The Provider Impact Survey, distributed from November 24, 2020, through March 8, 2021, assessed COVID-19’s effects on referrals for evaluation of suspected SMA, cancellations and delays of SMA-related care, and clinical trials. The Community Impact Survey was fielded in three waves between April 7, 2020 and July 19, 2021, in tandem with Cure SMA COVID-19 support programs. Results A total of 48 completed provider surveys (22 from care sites, 26 from care-and-trial sites) reflected decreases in referrals for suspected SMA, increases in appointment cancellations and delays, and patient reluctance to attend in-person visits due to COVID-19. One-third of care-and-trial sites reported trial recruitment delays, and one-quarter reported pausing trial enrollment. Results of the Community Impact Survey, completed by 2047 individuals, showed similar disruptions, with 55% reporting changes or limitations in accessing essential SMA-related services. Conclusions This research evaluates the pandemic’s interruption of SMA care and research. These insights can help mitigate and increase preparedness for future disruptive events. Expanded use of virtual tools including telehealth and remote monitoring may enhance continuity and access. However, additional research is required to evaluate their effectiveness. While this research was specific to SMA, its findings may have relevance for other patient communities.https://doi.org/10.1007/s40120-023-00516-2Appointment wait timesCOVID-19 pandemicDiagnosisNewborn screeningReferralsSMA |
| spellingShingle | Mary Curry Ilse Peterson Lisa Belter Fatou Sarr Sarah Whitmire Mary Schroth Jill Jarecki Effects of the COVID-19 Pandemic on SMA Screening and Care: Physician and Community Insights Neurology and Therapy Appointment wait times COVID-19 pandemic Diagnosis Newborn screening Referrals SMA |
| title | Effects of the COVID-19 Pandemic on SMA Screening and Care: Physician and Community Insights |
| title_full | Effects of the COVID-19 Pandemic on SMA Screening and Care: Physician and Community Insights |
| title_fullStr | Effects of the COVID-19 Pandemic on SMA Screening and Care: Physician and Community Insights |
| title_full_unstemmed | Effects of the COVID-19 Pandemic on SMA Screening and Care: Physician and Community Insights |
| title_short | Effects of the COVID-19 Pandemic on SMA Screening and Care: Physician and Community Insights |
| title_sort | effects of the covid 19 pandemic on sma screening and care physician and community insights |
| topic | Appointment wait times COVID-19 pandemic Diagnosis Newborn screening Referrals SMA |
| url | https://doi.org/10.1007/s40120-023-00516-2 |
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