title: Coping with amyotrophic lateral sclerosis; from diagnosis and during disease progression.
abstract: To evaluate coping strategies among patients with Amyotrophic lateral sclerosis starting with diagnosis and during the disease progression, as well as investigate changes and correlations between coping strategies, emotional well-being and physical function. A total of 36 patients participated in the study. The patients filled out the Hospital Anxiety and Depression Scale and the Motor Neuron Disease Coping Scale. Physical function was measured using the revised ALS functional rating scale. Data were collected regularly from diagnosis and over a two years period. As a way to cope with the disease patients relied on both problem focused and emotional focused strategies. The use of coping strategies remained stable. Both physical disabilities and emotional well-being was related to some coping strategies, with some variation during the disease progression. Moreover, some coping strategies were related to symptoms of anxiety and depression. Irrespective of whether the coping strategies affect the emotional well-being or vice versa, the results show the importance of early and continuous evaluation of coping and emotional well-being to ease the emotional distress and provide support to the patient so that he/she can cope with the disease during the disease progression.
authors.affiliation: Dept of Neuroscience, Neurology, University of Uppsala, Sweden. Electronic address: birgitta.jakobsson.larsson@neuro.uu.se.
authors.forename: Birgitta
authors.initials: B
authors.lastname: Jakobsson Larsson
authors.affiliation: Dept of Public Health and Caring Science, University of Uppsala, Sweden.
authors.forename: Karin
authors.initials: K
authors.lastname: Nordin
authors.affiliation: Dept of Neuroscience, Neurology, University of Uppsala, Sweden.
authors.forename: Ingela
authors.initials: I
authors.lastname: Nygren
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000175:diagnosis / Q000523:psychology*; D001007:Anxiety / Q000523:psychology; D003863:Depression / Q000523:psychology; D018450:Disease Progression; D004644:Emotions; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D011446:Prospective Studies; D011788:Quality of Life / Q000523:psychology*; D012944:Social Support; D013315:Stress, Psychological / Q000523:psychology*
keywords: ALS; Coping strategies; Emotional well-being; Longitudinal; Physical function; Prospective