Psychological health in patients with amyotrophic lateral sclerosis
Abstract
Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neurodegenerative disease with no known effective treatment or cure. Clinicians often expect that ALS patients will experience depression following the diagnosis because ALS is a terminal disease. The objective of the current study was to examine the evidence from the literature on psychological health in ALS patients in order to determine the prevalence and severity of depression in this population. Twenty-eight studies of ALS patients, conducted over the past 20 years, were reviewed and evaluated. The cumulative evidence suggests that clinically significant depression is neither as prevalent nor as severe as might be expected. Methodological limitations that are inherent to the measurement of depression in ALS, including the lack of appropriate instruments, small sample sizes, and reliance on cross-sectional data, have contributed to the wide range of reported results. We conclude that ALS patients are more likely to present with hopelessness and end-of-life concerns than clinically significant depression. It is important to assess a broad range of potential psychological distress early in the course of ALS, rather than focus specifically on depression, because the manner in which patients cope with their disease can affect their longevity.
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MND has been reported to be the most frequent cause of assisted suicide.
“MND has been reported to be the most frequent cause of assisted suicide [5–7].”
Hopelessness is one psychological aspect which presents a significant problem for patients with MND.
“Hopelessness is one psychological aspect which presents a significant problem for patients with MND”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as Averill et al., 2007
Interactions with others are beneficial for patients with MND because they provide a chance for individuals to give back or care for others.
“Apart from the benefits of being connected and valued with others, interactions were also beneficial in that they provided a chance for individuals to give back or care for others (5, 16, 17, 18, 19, 27).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [5]
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 [5]
Peers, friends, and close others become important to individuals with MND.
“In a similar way, peers friends and close others became important to individuals (4, 5, 8, 12, 16, 20, 29).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [5]
Patients with MND highly value maximizing the autonomy of their actions and task functions and require that they are respected within interactions.
“Patients highly valued maximizing the autonomy of their actions and task functions and required that they were respected within interactions (5, 7, 8, 11, 12, 14, 15, 16, 18, 19, 20, 21, 23, 24, 25, 28).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [5]
Relationships and interaction with others are identified as important for patients with MND.
“Further to this and more generally, relationships and interaction with others was identified as important (3, 5, 11, 14, 16, 18, 19, 20, 25, 27, 29).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [5]
Patients with MND consistently highlight the need for choice and autonomy during interactions.
“Related to this, patients consistently highlighted the need for choice and autonomy given during an interaction (5, 6, 7, 9, 12, 14, 15, 20, 24, 25, 26, 28).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [5]
Patients with MND describe the need to retain dignity and feel respected during interactions.
“Patients described the need to retain dignity and feel respected during interactions (5, 7, 12, 13, 15, 23, 25).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [5]
The role and care given by health care professionals is important because support from health care professionals influences participants' mental well-being and coping.
“The role and care given by HCPs was identified as important in that support from health care professionals influenced participants mental well-being and coping (4, 5, 12, 14, 16, 23, 26).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [5]
Patients with MND continued meaningful activities or continued being "normal", which provided access to a sense of purpose and meaning as well as valued interactions.
“Other pragmatic adaptation included individuals continuing meaningful activities (4, 5, 7, 9, 10, 12, 14, 15, 16, 17, 18, 19, 20, 25, 27, 29) or continuing being “normal” (1, 2, 5, 7, 9, 17, 18, 24) which provided access to a sense of purpose and meaning as well as valued interactions.”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [5]
A number of studies highlighted that patients with MND require physical assistance in increasing quantities.
“A number of studies highlighted that patients required physical assistance in increasing quantities (5, 11, 16, 18).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [5]
Patients with MND use the strategy of focusing on what could be done or achieved rather than what they couldn't do or what they had lost.
“(c) Focusing on what could be done or achieved (2, 5, 6, 7, 11, 12, 13, 14, 27), rather than what they couldn't or what they had lost.”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [5]
Patients with MND consistently identified the need to search for information in order to feel more in control.
“Individuals consistently identified the need to search for information in order to feel more in control (2, 4, 5, 9, 10, 12, 13, 14, 15, 22, 25, 26)”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [5]
Patients with MND took action as a way of controlling aspects of their life that were controllable.
“but also take action as a way of controlling aspects of their life that were controllable (2, 4, 5, 11, 12, 14, 18, 19).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [5]
Patients with MND use religious faith to aid acceptance, coping, or hoping for a miracle to occur, or life after death.
“(e) Using religious faith to aid acceptance, and coping, or hoping for a miracle to occur, or life after death (5, 9, 14, 16, 20, 27, 29).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [5]
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Reply to: Amyotrophic lateral sclerosis with depression, cognitive impairment, and mortality
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- Authors
- Averill, A. J., Kasarskis, E. J., & Segerstrom, S. C.
- Affiliations
- University of Kentucky (US)
- Corresponding author
- Segerstrom, Suzanne C.
- Venue
- Amyotrophic Lateral Sclerosis
- Publisher
- Informa UK Limited
- Published
- 2007-01
- Volume
- 8
- Issue
- 4
- Pages
- 243-254
- ISSN
- 1471-180X (ISSN-L)
- 1748-2968
- OpenAlex
- W1976849761
- Cited by
- 110
- References
- 83
- Citations by year
- 2026: 2 · 2025: 2 · 2024: 2 · 2023: 10 · 2022: 7 · 2021: 3 · 2020: 5 · 2019: 4 · 2018: 5 · 2017: 4 · 2016: 3 · 2015: 8 · 2014: 13 · 2013: 8 · 2012: 9
- FWCI
- 4.38
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Amyotrophic Lateral Sclerosis (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- depression, mental health, psychological distress, hopelessness, depression prevalence, depression severity, neurodegenerative diseases, coping
- MeSH terms
- Amyotrophic Lateral Sclerosis, Depression, Humans, Mental Health, Review Literature as Topic, Prevalence
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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