Our objective was to investigate information-seeking behaviour in patients with ALS and their caregivers and their rating of the usefulness of different information sources in Germany. Surveys were made on 106 patients and 100 caregivers in two university ALS outpatient clinics. Before seeing a doctor, 28% of patients and 23% of caregivers had used other sources to find symptom related information, mostly the internet. Although two-thirds were satisfied with the means of diagnosis disclosure, 88% of patients and 85% of caregivers searched for additional information, most often the internet (patients 72%, caregivers 85%), followed by patient brochures (patients 58%, caregivers 66%). Internet, patient brochures and the 'German Neuromuscular Disease Society' were rated most frequently as useful/very useful. Traditional print media and interpersonal contacts were also frequently used and most respondents relied on more than one source for information. Only few respondents used the internet for exchange with other patients. Two-thirds wanted to discuss web contents with their physician. In conclusion, patients with ALS and their caregivers clearly have additional information needs. Besides traditional information sources, the internet is frequently used. Therefore, reliable and useful websites should be provided. Patients' and caregivers' need to discuss their findings with the physician should be acknowledged.
Keywords: Amyotrophic lateral sclerosis; caregivers; information needs; information-seeking; internet search; patients.