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Living with adult-onset myotonic dystrophy type 1: a scoping review.
Allergodt, Kristin; Dreyer, Pia; Werlauff, Ulla; Handberg, Charlotte.
Afiliación
  • Allergodt K; National Rehabilitation Center for Neuromuscular Diseases, Aarhus, Denmark.
  • Dreyer P; Department of Public Health, Faculty of Health, Aarhus University, Aarhus, Denmark.
  • Werlauff U; Department of Public Health, Faculty of Health, Aarhus University, Aarhus, Denmark.
  • Handberg C; Department of Anaesthesiology and Intensive Care, Aarhus University Hospital, Aarhus, Denmark.
Disabil Rehabil ; : 1-12, 2024 Aug 30.
Article en En | MEDLINE | ID: mdl-39212084
ABSTRACT

PURPOSE:

To identify the existing literature on experiences of living with adult-onset myotonic dystrophy type 1 (DM1) from people with adult-onset DM1, their caregivers and health care professionals. MATERIALS AND

METHODS:

Following the framework of Arksey and O'Malley, a literature search was performed in five databases in October-November 2022. An updated search was conducted in December 2023. Studies were eligible if they reported on experiences related to living with DM1 from people with adult-onset DM1, caregivers or healthcare professionals. Qualitative, quantitative, and mixed method studies were included. Key findings were categorized using the International Classification of Functioning, Disability and Health (ICF) components.

RESULTS:

11 out of 1842 studies were included, of which five had a quantitative design, five had a qualitative design and one study had a mixed methods design. The studies reported on multiple experiences of living with adult-onset DM1 from the perspectives of people with the disease and their caregivers. All components of the ICF were reported in the studies; activity and participation and personal factors were the most reported.

CONCLUSION:

Adult-onset DM1 is a complex disease with great biopsychosocial impact making it challenging to live with for those diagnosed with DM1 as well as their caregivers.
Issues with hands or arms, myotonia, fatigue, impaired sleep or daytime sleepiness, and symptoms of depression in everyday life should be addressed in the follow-up of people with adult-onset myotonic dystrophy type 1 (DM1) to facilitate increased participation in daily life.Challenges related to activity and participation should be addressed in the follow-up of people with adult-onset DM1 to help facilitate increased activity and participation in everyday life.Interventions targeting caregiver needs are necessary to help them cope with living with a person with adult-onset DM1 and to minimize the negative impact DM1 has on their lives.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: Disabil Rehabil Asunto de la revista: REABILITACAO Año: 2024 Tipo del documento: Article País de afiliación: Dinamarca Pais de publicación: Reino Unido
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: Disabil Rehabil Asunto de la revista: REABILITACAO Año: 2024 Tipo del documento: Article País de afiliación: Dinamarca Pais de publicación: Reino Unido