Coping strategies among patients with newly diagnosed amyotrophic lateral sclerosis

Authors

  • Birgitta Jakobsson Larsson PhD Student, RN,

    Registered Nurse, Corresponding author
    1. Department of Neuroscience, Neurology, Uppsala University Hospital, Uppsala, Sweden
    • Correspondence: Birgitta Jakobsson Larsson, Registered Nurse, Department of Neuroscience, Neurology, Uppsala University Hospital, S 751 85 Uppsala, Sweden. Telephone: +46 18 6112875.

      E-mail: birgitta.jakobsson.larsson@neuro.uu.se

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  • Karin Nordin PhD,

    Licenced Psychologist
    1. Department of Public Health and Caring Science, University of Uppsala, Uppsala, Sweden
    2. Department of Global Health and Primary Care, University of Bergen, Norway
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  • Håkan Askmark PhD, MD,

    Neurologist and Professor
    1. Department of Neuroscience, Neurology, Uppsala University Hospital, Uppsala, Sweden
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  • Ingela Nygren PhD, MD

    Neurologist
    1. Department of Neuroscience, Neurology, Uppsala University Hospital, Uppsala, Sweden
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Abstract

Aims and objectives

To prospectively identify different coping strategies among newly diagnosed amyotrophic lateral sclerosis patients and whether they change over time and to determine whether physical function, psychological well-being, age and gender correlated with the use of different coping strategies.

Background

Amyotrophic lateral sclerosis is a fatal disease with impact on both physical function and psychological well-being. Different coping strategies are used to manage symptoms and disease progression, but knowledge about coping in newly diagnosed amyotrophic lateral sclerosis patients is scarce.

Design

This was a prospective study with a longitudinal and descriptive design.

Methods

A total of 33 patients were included and evaluation was made at two time points, one to three months and six months after diagnosis. Patients were asked to complete the Motor Neuron Disease Coping Scale and the Hospital Anxiety and Depression Scale. Physical function was estimated using the revised Amyotrophic Lateral Sclerosis Functional Rating Scale.

Results

The most commonly used strategies were support and independence. Avoidance/venting and information seeking were seldom used at both time points. The use of information seeking decreased between the two time points. Men did not differ from women, but patients ≤64 years used positive action more often than older patients. Amyotrophic Lateral Sclerosis Functional Rating Scale was positively correlated with positive action at time point 1, but not at time point 2. Patients' psychological well-being was correlated with the use of different coping strategies.

Conclusions

Support and independence were the most used coping strategies, and the use of different strategies changed over time. Psychological well-being was correlated with different coping strategies in newly diagnosed amyotrophic lateral sclerosis patients.

Relevance to clinical practice

The knowledge about coping strategies in early stage of the disease may help the nurses to improve and develop the care and support for these patients.

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