Literature DB >> 11194618

Disability, coping and quality of life in individuals with muscular dystrophy: a prospective study over five years.

B Nätterlund1, L G Gunnarsson, G Ahlström.   

Abstract

PURPOSE: The present study investigates progressive muscular dystrophy over a five year period. The purpose is twofold: to describe changes over time and to investigate relations between disability, coping and quality of life.
METHOD: The study group comprised 45 adults (16 men and 29 women), with an average age of 44 years. All were assessed in 1991 and 1996, with the following instruments: the ADL staircase, the Self-report ADL, the Mental Adjustment to Cancer scale, the Sickness Impact Profile and the Psychosocial well-being questionnaire (Kaasa).
RESULTS: Increasing disability was accompanied by an increase in dependence on others and a significant deterioration of health-related quality of life and with regard to 'Satisfaction'. The predominant type of coping was 'Fighting spirit', whilst 'Fatalism' showed the greatest decline over time. 'Ambulation' and the ADL staircase correlated with 'Physical index' on the SIP. Correlations between disability, coping and quality of life were moderate. The results can serve as a basis for planning and evaluation of recurring rehabilitation for persons with MD.

Entities:  

Mesh:

Year:  2000        PMID: 11194618     DOI: 10.1080/09638280050200278

Source DB:  PubMed          Journal:  Disabil Rehabil        ISSN: 0963-8288            Impact factor:   3.033


  12 in total

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2.  Measuring quality of life in muscular dystrophy.

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Review 3.  Oropharyngeal dysphagia in myotonic dystrophy type 1: a systematic review.

Authors:  Walmari Pilz; Laura W J Baijens; Bernd Kremer
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4.  Psychosocial issues that face patients with Charcot-Marie-Tooth disease: the role of genetic counseling.

Authors:  Angela Arnold; Meriel McEntagart; David S Younger
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Review 5.  A systematic review of quality of life in adults with muscle disease.

Authors:  Christopher D Graham; Michael R Rose; Elizabeth A Grunfeld; Simon D Kyle; John Weinman
Journal:  J Neurol       Date:  2011-05-20       Impact factor: 4.849

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7.  Living with myotonic dystrophy; what can be learned from couples? A qualitative study.

Authors:  Edith H C Cup; Astrid Kinébanian; Ton Satink; Allan J Pieterse; Henk T Hendricks; Rob A B Oostendorp; Gert Jan van der Wilt; Baziel G M van Engelen
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8.  Understanding the experience of myotonic dystrophy. Mixed method study.

Authors:  Amy Østertun Geirdal; Inger Lund-Petersen; Arvid Heiberg
Journal:  J Genet Couns       Date:  2014-08-16       Impact factor: 2.537

9.  Ageing with Muscular Disease.

Authors:  Bente Martinsen; Pia Dreyer
Journal:  Open Nurs J       Date:  2016-11-30

10.  Quality of life in adults with lymphedema cholestasis syndrome 1.

Authors:  Kristin Iversen; Lill Monica Drivdal; Kristin J Billaud Feragen; Amy Østertun Geirdal
Journal:  Health Qual Life Outcomes       Date:  2018-07-25       Impact factor: 3.186

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