A pilot study of young adults with multiple sclerosis: Demographic, disease, treatment, and psychosocial characteristics
Abstract
Background Although multiple sclerosis (MS) is the most common neurologic disease disabling younger adults, very little is known about the characteristics of young adults with MS and the impact of MS on their lives.Objectives To conduct a pilot study of the demographic, disease, treatment, and psychosocial characteristics of young adults with MS (aged 18 and 31 years).Methods We solicited participation from all 452 members of the Registry of the North American Research Committee On Multiple Sclerosis (NARCOMS) Project aged 18 to 31 years, collecting data from 100 of these young adults (22%) by computer-assisted telephone interviews. Data included basic demographic, disease, and treatment characteristics, ratings of satisfaction with access to and quality of MS and mental health care, and beliefs about the impact of MS on their current and future lives.Results Participants were 93% female and averaged 28.6 years of age, and 88% had relapsing-remitting MS. Forty-three percent received the majority of their MS-focused care at an MS clinic and 94% had seen a neurologist in the previous 12 months. More than 40% reported depressive symptoms at the time of the survey. These young adults with MS had relatively low rates of concern about the impact of MS in the present but higher rates of worry about their future.Conclusions These findings suggest the need for a study with a larger, representative sample of young adults with MS to guide development of programs, interventions, and services tailored to meet their needs.
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MS patients have more concerns about their future than about the impact of MS in the present.
“It seems that patients have more concerns about their future than about the impact of MS in the present.7”
From EMDR treatment for anxiety in MS patients: A pilot study (2020) · cites this paper as [7]
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- Authors
- Buchanan, R. J., Minden, S. L., Chakravorty, B. J., Hatcher, W., Tyry, T., & Vollmer, T.
- Affiliations
- Mississippi State University (US)
- Brigham and Women's Hospital (US)
- Tennessee State University (US)
- Barrow Neurological Institute (US)
- Corresponding author
- Buchanan, Robert J.
- Venue
- Disability and Health Journal
- Publisher
- Elsevier BV
- Published
- 2010-10
- Volume
- 3
- Issue
- 4
- Pages
- 262-270
- ISSN
- 1876-7583 (ISSN-L)
- 1936-6574
- OpenAlex
- W2000770249
- Cited by
- 27
- References
- 37
- Citations by year
- 2026: 1 · 2024: 3 · 2021: 5 · 2020: 6 · 2019: 2 · 2018: 1 · 2017: 1 · 2016: 1 · 2015: 2 · 2014: 1 · 2013: 1 · 2012: 2
- FWCI
- 0.70
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Disability and health journal (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Pathology and Forensic Medicine › Multiple Sclerosis Research Studies
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Keywords
- multiple sclerosis, young adults, relapsing-remitting multiple sclerosis, socio-psychological factors, depressive symptoms, access to mental health care, quality of care, treatment patterns, NARCOMS registry
- MeSH terms
- Adaptation, Psychological, Adult, Age Factors, Analysis of Variance, Female, Humans, Interview, Psychological, Male, Mental Health Services, Multiple Sclerosis, Pilot Projects, Quality of Life, Registries, Risk Factors, Social Support, Stress, Psychological, United States, Treatment Failure, Health Care Surveys
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