Information needs and information-seeking preferences of ALS patients and their carers
Abstract
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.
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The continued expression of strong emotions or feelings, like anger, love through closeness and sexual intimacy, is identified as important for patients with MND.
“The continued expression of strong emotions or feelings, like anger, love through closeness and sexual intimacy was identified as important (1, 7, 13, 16, 20).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [1]
Patients with MND can feel sadness and grief about the losses the illness has imposed on their lives.
“Patients could also feel sadness and grief about the losses the illness had imposed on their lives (1, 5, 12).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [1]
Benefit has been found in those who take action by searching for information and gaining understanding.
“benefit has been found in those who take action by searching for information and gaining understanding (Abdulla et al., 2014).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as Abdulla et al., 2014
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- Authors
- Abdulla, S., Vielhaber, S., Machts, J., Heinze, H.-J., Dengler, R., & Petri, S.
- Affiliations
- German Center for Neurodegenerative Diseases (DE)
- Medizinische Hochschule Hannover (DE)
- Corresponding author
- Abdulla, Susanne
- Venue
- Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
- Publisher
- Informa UK Limited
- Published
- 2014-07-10
- Volume
- 15
- Issue
- 7-8
- Pages
- 505-512
- ISSN
- 2167-8421 (ISSN-L)
- 2167-9223
- OpenAlex
- W2328055608
- Cited by
- 42
- References
- 36
- Citations by year
- 2026: 4 · 2025: 2 · 2024: 7 · 2023: 1 · 2022: 6 · 2021: 3 · 2020: 7 · 2019: 3 · 2018: 1 · 2017: 3 · 2016: 1 · 2015: 4
- FWCI
- 4.82
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration (publishedVersion)
- PubMed (publishedVersion)
- DZNE Pub (submittedVersion)
- Funders
- Otto von Guericke University Magdeburg
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Keywords
- amyotrophic lateral sclerosis, information needs, information seeking, caregivers, patient information sources, internet use, patient information brochure, diagnosis disclosure, patient-physician communication, online patient communities
- MeSH terms
- Aged, Amyotrophic Lateral Sclerosis, Female, Humans, Male, Middle Aged, Caregivers, Internet, Information Seeking Behavior
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