title: Subjective experience and coping in ALS.
abstract: OBJECTIVE
  Amyotrophic lateral sclerosis is a rapidly progressive and fatal disease which has no known cure and limited symptomatic treatment. While coping strategies in more common diseases are widely assessed, coping is poorly understood in ALS.
  
  
  METHODS
  We examined 41 ALS patients using a standardised interview, a validated coping self-rating questionnaire and a self-rating depression scale. The evaluation was repeated after six months.
  
  
  RESULTS
  "Loss of speech", "loss of mobility" and "the poor prognosis" were the most frequent answers in the standardised interview to questions regarding the worst aspect of the disease. Pain was seldom mentioned. "Family members" were most helpful in coping with the disease, followed by "unspecific mechanisms" and "technical aids". None of our patients expressed a wish for assisted suicide. In comparison with other fatal diseases, patients with ALS had similar rankings in the coping mechanism of "rumination", but lower rankings in "search for social integration", "defence of fear", "search for information and communication". In contrast,* "search for hold in the religion" was of high importance for our ALS patients. In the follow-up examination the importance of "search for information and communication" increased.
  
  
  CONCLUSIONS
  The results emphasise the importance of "loss of speech" and the importance of the caring family as well as the availability of technical aids in ALS. Coping in ALS seems to be based mainly on "rumination" and *"hold in the religion", but the increasing importance of "search for information" indicates that the sustained offer of information is essential.
authors.affiliation: Department of Neurology, Centre of Neuromuscular diseases, University of Erlangen-Nuremberg, Schwabachanlage 6, D-91054 Erlangen, Germany. martin.hecht@neuro.med.uni-erlangen.de
authors.forename: Martin
authors.initials: M
authors.lastname: Hecht
authors.forename: Thomas
authors.initials: T
authors.lastname: Hillemacher
authors.forename: Elmar
authors.initials: E
authors.lastname: Gräsel
authors.forename: Sebastian
authors.initials: S
authors.lastname: Tigges
authors.forename: Martin
authors.initials: M
authors.lastname: Winterholler
authors.forename: Dieter
authors.initials: D
authors.lastname: Heuss
authors.forename: Max-Josef
authors.initials: MJ
authors.lastname: Hilz
authors.forename: Bernhard
authors.initials: B
authors.lastname: Neundörfer
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000503:physiopathology / Q000523:psychology*; D001364:Awareness; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007406:Interview, Psychological; D008016:Life Change Events; D008297:Male; D008875:Middle Aged; D011594:Psychometrics; D011788:Quality of Life; D011795:Surveys and Questionnaires