ALS patients and caregivers communication preferences and information seeking behaviour

Eur J Neurol. 2008 Jan;15(1):55-60. doi: 10.1111/j.1468-1331.2007.02000.x. Epub 2007 Nov 14.


To evaluate information preferences and information seeking behaviour in ALS patients and caregivers. Sixty ALS patients and caregivers couples were interviewed using a structured questionnaire about the content of diagnosis communication and their information seeking behaviour. The patients (35 men and 25 women) had a mean age of 63.4 years (SD 9.5). The caregivers (21 men and 39 women) had a mean age of 53.3 years (SD 14.9). The overall satisfaction with bad news communication and the impression that the physician had understood their feelings were higher amongst patients. Both parties indicated that the most important aspects to be informed were current researches, disease-modifying therapies and ALS outcome. Approximately 55% of patients and 83.3% of caregivers searched for information from sources outside the healthcare system. The most frequently checked source was internet, although its reliability was rated low. The caring neurologist should better attune the content of communication to patients' and caregivers' preferences, trying to understand what they want to know and encouraging them to make precise questions. Health professionals should be aware that ALS patients and caregivers often use internet to obtain information and should help them to better sort-out and interpret the news they found.

MeSH terms

  • Adaptation, Psychological
  • Aged
  • Amyotrophic Lateral Sclerosis / nursing*
  • Amyotrophic Lateral Sclerosis / psychology*
  • Attitude to Death
  • Caregivers / psychology*
  • Caregivers / statistics & numerical data*
  • Communication
  • Female
  • Health Personnel / psychology
  • Health Personnel / standards
  • Health Personnel / statistics & numerical data
  • Humans
  • Male
  • Middle Aged
  • Patient Education as Topic / standards
  • Patient Education as Topic / statistics & numerical data*
  • Patient Participation
  • Physician-Patient Relations*
  • Prognosis
  • Surveys and Questionnaires
  • Terminally Ill
  • Truth Disclosure