Impact of social determinants of health on individuals living with generalized myasthenia gravis and implications for patient support programs
IntroductionSocial determinants of health (SDOH) are important contributors to health outcomes, and better understanding their impact on individuals diagnosed with rare, chronic diseases with high burden and unmet need is critical. Characterizing SDOH burden can help improve the design of patient su...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2023-05-01
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| Series: | Frontiers in Public Health |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fpubh.2023.1147489/full |
| _version_ | 1797823633713790976 |
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| author | Tom Hughes Ashley E. L. Anderson Ali A. Habib Kathy Perez Cathleen Bergin Sharon Suchotliff Cecilia Zvosec Dajzsa McDaniel Mai Sato Albert Whangbo Glenn Phillips |
| author_facet | Tom Hughes Ashley E. L. Anderson Ali A. Habib Kathy Perez Cathleen Bergin Sharon Suchotliff Cecilia Zvosec Dajzsa McDaniel Mai Sato Albert Whangbo Glenn Phillips |
| author_sort | Tom Hughes |
| collection | DOAJ |
| description | IntroductionSocial determinants of health (SDOH) are important contributors to health outcomes, and better understanding their impact on individuals diagnosed with rare, chronic diseases with high burden and unmet need is critical. Characterizing SDOH burden can help improve the design of patient support programs (PSPs), using targeted approaches to remove barriers to access.MethodsThis study used a mixed-methods strategy employing a quantitative survey, which was designed based on qualitative interviews, to understand the unmet needs and awareness/utilization of PSPs among individuals living with generalized myasthenia gravis (gMG) and experiencing SDOH barriers. The survey was completed by 38 individuals living with gMG, of which the majority were non-White/Caucasian, unemployed, low income, and enrolled in public insurance. Common SDOH challenges, awareness/utilization of available PSPs, and unmet needs were identified.ResultsFinancial and mental health concerns were the most common among individuals living with gMG and experiencing SDOH barriers throughout diagnosis, accessing treatment, initiating treatment, and continuing treatment. Awareness and utilization of existing support services were low, especially when accessing treatment. Educational, financial, and personalized support with high “human touch” were commonly perceived as the most valuable resources.ImplicationsTo better serve the needs of individuals with gMG experiencing SDOH barriers, PSPs should use a targeted approach to offer services tailored to harder-to-reach populations. Further, providers, advocacy groups, manufacturers, and public organizations in the gMG ecosystem should strengthen collaborations with PSPs to enable individuals living with gMG to access the services they need to improve their health outcomes. |
| first_indexed | 2024-03-13T10:26:48Z |
| format | Article |
| id | doaj.art-605a2804ceb64395bc8ff3b2ebe38b9c |
| institution | Directory Open Access Journal |
| issn | 2296-2565 |
| language | English |
| last_indexed | 2024-03-13T10:26:48Z |
| publishDate | 2023-05-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Public Health |
| spelling | doaj.art-605a2804ceb64395bc8ff3b2ebe38b9c2023-05-19T06:03:12ZengFrontiers Media S.A.Frontiers in Public Health2296-25652023-05-011110.3389/fpubh.2023.11474891147489Impact of social determinants of health on individuals living with generalized myasthenia gravis and implications for patient support programsTom Hughes0Ashley E. L. Anderson1Ali A. Habib2Kathy Perez3Cathleen Bergin4Sharon Suchotliff5Cecilia Zvosec6Dajzsa McDaniel7Mai Sato8Albert Whangbo9Glenn Phillips10argenx US Inc., Boston, MA, United StatesDepartment of Neurology, Houston Methodist, Houston, TX, United StatesUCI Health ALS & Neuromuscular Center, University of California Irvine, Orange, CA, United Statesargenx US Inc., Boston, MA, United Statesargenx US Inc., Boston, MA, United StatesZS Associates, New York, NY, United StatesZS Associates, New York, NY, United StatesZS Associates, New York, NY, United StatesZS Associates, New York, NY, United StatesZS Associates, New York, NY, United Statesargenx US Inc., Boston, MA, United StatesIntroductionSocial determinants of health (SDOH) are important contributors to health outcomes, and better understanding their impact on individuals diagnosed with rare, chronic diseases with high burden and unmet need is critical. Characterizing SDOH burden can help improve the design of patient support programs (PSPs), using targeted approaches to remove barriers to access.MethodsThis study used a mixed-methods strategy employing a quantitative survey, which was designed based on qualitative interviews, to understand the unmet needs and awareness/utilization of PSPs among individuals living with generalized myasthenia gravis (gMG) and experiencing SDOH barriers. The survey was completed by 38 individuals living with gMG, of which the majority were non-White/Caucasian, unemployed, low income, and enrolled in public insurance. Common SDOH challenges, awareness/utilization of available PSPs, and unmet needs were identified.ResultsFinancial and mental health concerns were the most common among individuals living with gMG and experiencing SDOH barriers throughout diagnosis, accessing treatment, initiating treatment, and continuing treatment. Awareness and utilization of existing support services were low, especially when accessing treatment. Educational, financial, and personalized support with high “human touch” were commonly perceived as the most valuable resources.ImplicationsTo better serve the needs of individuals with gMG experiencing SDOH barriers, PSPs should use a targeted approach to offer services tailored to harder-to-reach populations. Further, providers, advocacy groups, manufacturers, and public organizations in the gMG ecosystem should strengthen collaborations with PSPs to enable individuals living with gMG to access the services they need to improve their health outcomes.https://www.frontiersin.org/articles/10.3389/fpubh.2023.1147489/fullpatientscaregiversmyasthenia gravissocial determinants of healthburdenpatient support services |
| spellingShingle | Tom Hughes Ashley E. L. Anderson Ali A. Habib Kathy Perez Cathleen Bergin Sharon Suchotliff Cecilia Zvosec Dajzsa McDaniel Mai Sato Albert Whangbo Glenn Phillips Impact of social determinants of health on individuals living with generalized myasthenia gravis and implications for patient support programs Frontiers in Public Health patients caregivers myasthenia gravis social determinants of health burden patient support services |
| title | Impact of social determinants of health on individuals living with generalized myasthenia gravis and implications for patient support programs |
| title_full | Impact of social determinants of health on individuals living with generalized myasthenia gravis and implications for patient support programs |
| title_fullStr | Impact of social determinants of health on individuals living with generalized myasthenia gravis and implications for patient support programs |
| title_full_unstemmed | Impact of social determinants of health on individuals living with generalized myasthenia gravis and implications for patient support programs |
| title_short | Impact of social determinants of health on individuals living with generalized myasthenia gravis and implications for patient support programs |
| title_sort | impact of social determinants of health on individuals living with generalized myasthenia gravis and implications for patient support programs |
| topic | patients caregivers myasthenia gravis social determinants of health burden patient support services |
| url | https://www.frontiersin.org/articles/10.3389/fpubh.2023.1147489/full |
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