A pilot study of young adults with multiple sclerosis

Demographic, disease, treatment, and psychosocial characteristics

Robert J. Buchanan, Sarah L. Minden, Bonnie J. Chakravorty, William Scott Hatcher, Tuula Tyry, Timothy Vollmer

Research output: Contribution to journalArticle

9 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)262-270
Number of pages9
JournalDisability and Health Journal
Volume3
Issue number4
DOIs
StatePublished - Oct 1 2010

Fingerprint

Multiple Sclerosis
Young Adult
Demography
Therapeutics
Relapsing-Remitting Multiple Sclerosis
Program Development
Nervous System Diseases
Registries
Mental Health
Interviews
Depression
Delivery of Health Care

Keywords

  • Mental health
  • Multiple sclerosis
  • Symptoms
  • Treatments
  • Young adults

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

A pilot study of young adults with multiple sclerosis : Demographic, disease, treatment, and psychosocial characteristics. / Buchanan, Robert J.; Minden, Sarah L.; Chakravorty, Bonnie J.; Hatcher, William Scott; Tyry, Tuula; Vollmer, Timothy.

In: Disability and Health Journal, Vol. 3, No. 4, 01.10.2010, p. 262-270.

Research output: Contribution to journalArticle

Buchanan, Robert J. ; Minden, Sarah L. ; Chakravorty, Bonnie J. ; Hatcher, William Scott ; Tyry, Tuula ; Vollmer, Timothy. / A pilot study of young adults with multiple sclerosis : Demographic, disease, treatment, and psychosocial characteristics. In: Disability and Health Journal. 2010 ; Vol. 3, No. 4. pp. 262-270.
@article{245065c313be4459b6043cdc6d6f99e2,
title = "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.",
keywords = "Mental health, Multiple sclerosis, Symptoms, Treatments, Young adults",
author = "Buchanan, {Robert J.} and Minden, {Sarah L.} and Chakravorty, {Bonnie J.} and Hatcher, {William Scott} and Tuula Tyry and Timothy Vollmer",
year = "2010",
month = "10",
day = "1",
doi = "10.1016/j.dhjo.2009.09.003",
language = "English (US)",
volume = "3",
pages = "262--270",
journal = "Disability and Health Journal",
issn = "1936-6574",
publisher = "Elsevier Inc.",
number = "4",

}

TY - JOUR

T1 - A pilot study of young adults with multiple sclerosis

T2 - Demographic, disease, treatment, and psychosocial characteristics

AU - Buchanan, Robert J.

AU - Minden, Sarah L.

AU - Chakravorty, Bonnie J.

AU - Hatcher, William Scott

AU - Tyry, Tuula

AU - Vollmer, Timothy

PY - 2010/10/1

Y1 - 2010/10/1

N2 - 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.

AB - 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.

KW - Mental health

KW - Multiple sclerosis

KW - Symptoms

KW - Treatments

KW - Young adults

UR - http://www.scopus.com/inward/record.url?scp=77956964895&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=77956964895&partnerID=8YFLogxK

U2 - 10.1016/j.dhjo.2009.09.003

DO - 10.1016/j.dhjo.2009.09.003

M3 - Article

VL - 3

SP - 262

EP - 270

JO - Disability and Health Journal

JF - Disability and Health Journal

SN - 1936-6574

IS - 4

ER -