Literature DB >> 20587497

Coping with amyotrophic lateral sclerosis: an integrative view.

Tamara Matuz1, Niels Birbaumer, Martin Hautzinger, Andrea Kübler.   

Abstract

OBJECTIVES: To identify predictors of psychosocial adjustment to motor neurone disease.
METHODS: A total of 27 individuals with a confirmed diagnosis of amyotrophic lateral sclerosis (ALS) participated in the study. The ALS functional rating scale mean score indicated a high physical impairment of the sample. Months since diagnosis varied between 4 and 129 (median 36). Adjustment outcomes were severity of depressive symptoms and individual quality of life (QoL). Predictors included social support, cognitive appraisal, coping strategies and illness parameters.
RESULTS: Multiple regression analysis revealed that approximately 60% of the variance of depression and QoL were accounted for by social support, coping strategies and cognitive appraisal. The degree of physical impairment did not explain any variance of the adjustment outcomes. The best predictors for the severity of depressive symptoms were perceived social support and appraisal of coping potential (internal locus of control) and for individual QoL perceived social support.
CONCLUSIONS: The focus on medical issues in treatment of ALS is not sufficient. A palliative approach to ALS must equally imply advice with regards to adequate coping strategies, provide the adequate amount of disease- and support-related information at any one time, and encourage patients to seek social support. Sufficient medication and psychotherapy has to be provided for those patients who show depressive symptoms or disorder.

Entities:  

Mesh:

Year:  2010        PMID: 20587497     DOI: 10.1136/jnnp.2009.201285

Source DB:  PubMed          Journal:  J Neurol Neurosurg Psychiatry        ISSN: 0022-3050            Impact factor:   10.154


  18 in total

1.  Live and let die: existential decision processes in a fatal disease.

Authors:  Dorothée Lulé; Sonja Nonnenmacher; Sonja Sorg; Johanna Heimrath; Martin Hautzinger; Thomas Meyer; Andrea Kübler; Niels Birbaumer; Albert C Ludolph
Journal:  J Neurol       Date:  2014-01-12       Impact factor: 4.849

2.  Emotional adjustment in amyotrophic lateral sclerosis (ALS).

Authors:  Dorothée Lulé; Sandra Pauli; Ertan Altintas; Ulrike Singer; Thomas Merk; Ingo Uttner; Niels Birbaumer; Albert C Ludolph
Journal:  J Neurol       Date:  2011-08-02       Impact factor: 4.849

3.  Experience matters: neurologists' perspectives on ALS patients' well-being.

Authors:  Helena E A Aho-Özhan; Sarah Böhm; Jürgen Keller; Johannes Dorst; Ingo Uttner; Albert C Ludolph; Dorothée Lulé
Journal:  J Neurol       Date:  2017-01-24       Impact factor: 4.849

Review 4.  Together from the start: A transdiagnostic framework for early dyadic interventions for neurodegenerative diseases.

Authors:  Sarah M Bannon; Victoria A Grunberg; Heena R Manglani; Ethan G Lester; Christine Ritchie; Ana-Maria Vranceanu
Journal:  J Am Geriatr Soc       Date:  2022-04-18       Impact factor: 7.538

5.  Quality of life in fatal disease: the flawed judgement of the social environment.

Authors:  Dorothée Lulé; Benedikt Ehlich; Dirk Lang; Sonja Sorg; Johanna Heimrath; Andrea Kübler; Niels Birbaumer; Albert C Ludolph
Journal:  J Neurol       Date:  2013-08-30       Impact factor: 4.849

6.  Life satisfaction in families with a child in an Unresponsive Wakefulness Syndrome.

Authors:  Christiane Chadasch; Boris Kotchoubey
Journal:  BMC Pediatr       Date:  2021-03-08       Impact factor: 2.125

7.  Effects of aerobic exercise therapy and cognitive behavioural therapy on functioning and quality of life in amyotrophic lateral sclerosis: protocol of the FACTS-2-ALS trial.

Authors:  Annerieke C van Groenestijn; Ingrid G L van de Port; Carin D Schröder; Marcel W M Post; Hepke F Grupstra; Esther T Kruitwagen; Harmen van der Linde; Reinout O van Vliet; Margreet G H van de Weerd; Leonard H van den Berg; Eline Lindeman
Journal:  BMC Neurol       Date:  2011-06-14       Impact factor: 2.474

8.  Identification of personal factors in motor neurone disease: a pilot study.

Authors:  Louisa Ng; Fary Khan
Journal:  Rehabil Res Pract       Date:  2011-07-07

9.  What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives.

Authors:  Anne Hogden; David Greenfield; Peter Nugus; Matthew C Kiernan
Journal:  Patient Prefer Adherence       Date:  2012-11-27       Impact factor: 2.711

10.  Psychosocial adjustment to ALS: a longitudinal study.

Authors:  Tamara Matuz; Niels Birbaumer; Martin Hautzinger; Andrea Kübler
Journal:  Front Psychol       Date:  2015-09-14
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