The patient journey with NMOSD: From initial diagnosis to chronic condition
ObjectiveTo better understand the patient experience with neuromyelitis optica spectrum disorder (NMOSD) through the course of the illness.BackgroundNMOSD is a rare autoimmune disorder that causes recurrent inflammatory attacks of the optic nerve, spinal cord, and brain. Knowledge and awareness of N...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2022-09-01
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| Series: | Frontiers in Neurology |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fneur.2022.966428/full |
| _version_ | 1811210786689777664 |
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| author | Guillermo Delgado-Garcia Guillermo Delgado-Garcia Sheryl Lapidus Rosa Talero Michael Levy |
| author_facet | Guillermo Delgado-Garcia Guillermo Delgado-Garcia Sheryl Lapidus Rosa Talero Michael Levy |
| author_sort | Guillermo Delgado-Garcia |
| collection | DOAJ |
| description | ObjectiveTo better understand the patient experience with neuromyelitis optica spectrum disorder (NMOSD) through the course of the illness.BackgroundNMOSD is a rare autoimmune disorder that causes recurrent inflammatory attacks of the optic nerve, spinal cord, and brain. Knowledge and awareness of NMOSD in the general medical community are often limited, resulting in potential delays in diagnosis and treatment.Design/methodsWe developed a comprehensive 101-question survey to understand the patient's perspective on their journey from initial presentation to present condition. The survey covered basic demographics, symptoms, medical tests used to reach a diagnosis, and the patient's psychosocial responses to their diagnosis. The survey included questions to determine internal consistency in responses. We shared the survey with members of the Neuromyelitis Optica (NMO) Clinic Facebook group and received responses from 151 patients. All data collected were self-reported and presented as summary statistics.ResultsThe majority of survey responses were from patients who were female (83%) and White (76%), Asian (7%), or African American (7%). Initial symptoms of disease included fatigue, pain, stiffness/spasticity, bladder and bowel dysfunction, cognitive/emotional symptoms, and visual disturbances. Initial reactions to NMOSD diagnosis were frequently fear, anxiety, and/or depression. Mean (SD) time to diagnosis was 2.2 (3.2) years. First contact with a medical professional was felt to be not helpful or somewhat helpful for many patients (71%), in part due to uncertain diagnosis and/or treatment. However, once referred to specialists (primarily neurologists), the majority of patients (87%) reported finding a professional who could help. Tests leading to diagnosis included magnetic resonance imaging, lumbar puncture, and blood tests for autoantibodies including aquaporin-4 (AQP4) and myelin oligodendrocyte glycoprotein (MOG). While approximately 30% of patients still felt challenged for a variety of reasons, most patients reported that having a diagnosis and being under the care of a specialist contributed to a comprehensive plan with hope for their future.ConclusionsThe NMOSD patient journey frequently begins with anxiety, fear, and frustration. Finding the right specialist and identifying appropriate screening tests can lead to earlier diagnosis and progression toward better patient outcomes. |
| first_indexed | 2024-04-12T05:01:28Z |
| format | Article |
| id | doaj.art-8564c0f053d4434c825ef911078a2878 |
| institution | Directory Open Access Journal |
| issn | 1664-2295 |
| language | English |
| last_indexed | 2024-04-12T05:01:28Z |
| publishDate | 2022-09-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Neurology |
| spelling | doaj.art-8564c0f053d4434c825ef911078a28782022-12-22T03:46:59ZengFrontiers Media S.A.Frontiers in Neurology1664-22952022-09-011310.3389/fneur.2022.966428966428The patient journey with NMOSD: From initial diagnosis to chronic conditionGuillermo Delgado-Garcia0Guillermo Delgado-Garcia1Sheryl Lapidus2Rosa Talero3Michael Levy4Department of Clinical Neurosciences, Cumming School of Medicine, University of Calgary, Calgary, AB, CanadaCentro de Investigacion y Desarrollo en Ciencias de la Salud (CIDICS), Universidad Autonoma de Nuevo Leon, Monterrey, MexicoPatient Advocacy, Horizon Therapeutics, Deerfield, IL, United StatesPatient at Neuromyelitis Optica Clinic and Research Laboratory, Massachusetts General Hospital, Boston, MA, United StatesNeuromyelitis Optica Clinic and Research Laboratory, Department of Neurology, Massachusetts General Hospital/Harvard Medical School, Boston, MA, United StatesObjectiveTo better understand the patient experience with neuromyelitis optica spectrum disorder (NMOSD) through the course of the illness.BackgroundNMOSD is a rare autoimmune disorder that causes recurrent inflammatory attacks of the optic nerve, spinal cord, and brain. Knowledge and awareness of NMOSD in the general medical community are often limited, resulting in potential delays in diagnosis and treatment.Design/methodsWe developed a comprehensive 101-question survey to understand the patient's perspective on their journey from initial presentation to present condition. The survey covered basic demographics, symptoms, medical tests used to reach a diagnosis, and the patient's psychosocial responses to their diagnosis. The survey included questions to determine internal consistency in responses. We shared the survey with members of the Neuromyelitis Optica (NMO) Clinic Facebook group and received responses from 151 patients. All data collected were self-reported and presented as summary statistics.ResultsThe majority of survey responses were from patients who were female (83%) and White (76%), Asian (7%), or African American (7%). Initial symptoms of disease included fatigue, pain, stiffness/spasticity, bladder and bowel dysfunction, cognitive/emotional symptoms, and visual disturbances. Initial reactions to NMOSD diagnosis were frequently fear, anxiety, and/or depression. Mean (SD) time to diagnosis was 2.2 (3.2) years. First contact with a medical professional was felt to be not helpful or somewhat helpful for many patients (71%), in part due to uncertain diagnosis and/or treatment. However, once referred to specialists (primarily neurologists), the majority of patients (87%) reported finding a professional who could help. Tests leading to diagnosis included magnetic resonance imaging, lumbar puncture, and blood tests for autoantibodies including aquaporin-4 (AQP4) and myelin oligodendrocyte glycoprotein (MOG). While approximately 30% of patients still felt challenged for a variety of reasons, most patients reported that having a diagnosis and being under the care of a specialist contributed to a comprehensive plan with hope for their future.ConclusionsThe NMOSD patient journey frequently begins with anxiety, fear, and frustration. Finding the right specialist and identifying appropriate screening tests can lead to earlier diagnosis and progression toward better patient outcomes.https://www.frontiersin.org/articles/10.3389/fneur.2022.966428/fullNMOSDneuromyelitis optica spectrum disorderpatient journeydiagnosispatient experiencepatient perspectives |
| spellingShingle | Guillermo Delgado-Garcia Guillermo Delgado-Garcia Sheryl Lapidus Rosa Talero Michael Levy The patient journey with NMOSD: From initial diagnosis to chronic condition Frontiers in Neurology NMOSD neuromyelitis optica spectrum disorder patient journey diagnosis patient experience patient perspectives |
| title | The patient journey with NMOSD: From initial diagnosis to chronic condition |
| title_full | The patient journey with NMOSD: From initial diagnosis to chronic condition |
| title_fullStr | The patient journey with NMOSD: From initial diagnosis to chronic condition |
| title_full_unstemmed | The patient journey with NMOSD: From initial diagnosis to chronic condition |
| title_short | The patient journey with NMOSD: From initial diagnosis to chronic condition |
| title_sort | patient journey with nmosd from initial diagnosis to chronic condition |
| topic | NMOSD neuromyelitis optica spectrum disorder patient journey diagnosis patient experience patient perspectives |
| url | https://www.frontiersin.org/articles/10.3389/fneur.2022.966428/full |
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