Cited by 193Amyotrophic Lateral Sclerosis ResearchCancer survivorship and careNeurogenetic and Muscular Disorders Research

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Survival in Amyotrophic Lateral Sclerosis: The Role of Psychological Factors

McDonald, Evelyn R.·1994·Archives of Neurology

DOI 10.1001/archneur.1994.00540130027010

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Abstract

OBJECTIVE: Examining the relationship between psychological status and survival in amyotrophic lateral sclerosis. Our hypothesis is that psychological distress is associated with greater mortality and shorter survival time than psychological well-being. DESIGN: Cross-sectional, longitudinal. The baseline evaluations used were disease severity and 10 psychometric tests. A psychological status score was derived from these tests. Survival status was monitored for 3.5 years. Interviewers were blinded to other interviews and data analysis. SETTING: Patient's residence. PATIENTS: The criteria for eligibility were diagnosis of amyotrophic lateral sclerosis by a neurologist, dementia or alcoholism absent, communication in English, and any severity or length of disease. It was a volunteer sample consisting of 144 patients from amyotrophic lateral sclerosis clinics or community-based amyotrophic lateral sclerosis support groups. In this sample 66% were men, 94% were white, mean age at diagnosis was 55 years, 79% were married, 60% had some college education, and 61% died during the study. INTERVENTIONS: None. END POINTS: mortality during study, survival time from intake to last follow-up. RESULTS: Comparison between high and low psychological score groups: 32% of high and 82% of low died; survival curves were significantly different. Controlling for confounding factors (length of illness, disease severity, age), patients with psychological distress had a greater risk of mortality (relative risk, 6.76; 95% confidence limits, 1.69 to 27.12) and greater likelihood of dying in any given time period (relative risk, 2.24; 95% confidence limits, 1.08 to 4.64) than those with psychological well-being. CONCLUSION: Adjusting for confounding factors, psychological status is strongly related to outcome in amyotrophic lateral sclerosis. Further studies on psychological status should be done to confirm its prognostic value.

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“Moreover, there are findings that suggest a strong relationship between role of psychological factors and outcome in ALS (McDonald et al., 1994).”
Background
Analysis of health-related quality of life and muscle impairment in individuals with amyotrophic lateral sclerosis using the medical outcome survey and the tufts quantitative neuromuscular exam
Shields, R. K., Ruhland, J. L., Ross, M. A., Saehler, M. M., Smith, K. B., & Heffner, M. L. (1998) · Archives of Physical Medicine and Rehabilitation · doi:10.1016/s0003-9993(98)90370-7 · Cited by 38
Health professionals' responses to multiple sclerosis and motor neurone disease
Carter, H., McKenna, C., MacLeod, R., & Green, R. (1998) · Palliative Medicine · doi:10.1191/026921698668830097 · Cited by 38
The Relationship between Depressive Symptoms, Disease State, and Cognition in Amyotrophic Lateral Sclerosis
Jelsone-Swain, L. M., Persad, C. C., Votruba, K., Weisenbach, S. L., Johnson, T. D., Gruis, K. L., & Welsh, R. C. (2012) · Frontiers in Psychology · doi:10.3389/fpsyg.2012.00542 · Cited by 37
“Given these findings, in conjunction with evidence for increased mortality risk in those with psychological distress (McDonald et al., 1994), future research on depression treatment and its association with survival should be emphasized.”
Background
Prognosis in amyotrophic lateral sclerosis: A population-based study
Chiò, A., Mutani, R., & Mora, G. (2003) · Neurology · doi:10.1212/01.wnl.0000100668.21675.e5 · Cited by 37
Disease progression in a mouse model of amyotrophic lateral sclerosis: the influence of chronic stress and corticosterone
Fidler, J. A., Treleaven, C. M., Frakes, A., Tamsett, T. J., McCrate, M., Cheng, S. H., Shihabuddin, L. S., Kaspar, B. K., & Dodge, J. C. (2011) · The FASEB Journal · doi:10.1096/fj.11-190819 · Cited by 39
Usability of eyetracking computer systems and impact on psychological wellbeing in patients with advanced amyotrophic lateral sclerosis
Linse, K., Rüger, W., Joos, M., Schmitz‐Peiffer, H., Storch, A., & Hermann, A. (2017) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2017.1392576 · Cited by 35
“In 1994, McDonald (34) stated the controversial hypothesis that, controlled for age, disease severity and duration, psychological well-being influences survival in ALS.”
Background
Illness perceptions, mood and health-related quality of life in patients with amyotrophic lateral sclerosis
Miglioretti, M., Mazzini, L., Oggioni, G. D., Testa, L., & Monaco, F. (2008) · Journal of Psychosomatic Research · doi:10.1016/j.jpsychores.2008.05.012 · Cited by 35
Hypnosis-based psychodynamic treatment in ALS: a longitudinal study on patients and their caregivers
Kleinbub, J. R., Palmieri, A., Broggio, A., Pagnini, F., Benelli, E., Sambin, M., & Sorarú, G. (2015) · Frontiers in Psychology · doi:10.3389/fpsyg.2015.00822 · Cited by 34
“Secondly, on the basis of previous results linking psychological well-being and disease progression (McDonald et al., 1994; Johnston et al., 1999; Krampe et al., 2008; Pagnini et al., 2014a), we investigated the possibility of a positive physical effect on disease progression in the treatment group…”
Background
Do Psychosocial Interventions Improve Quality of Life and Wellbeing in Adults with Neuromuscular Disorders? A Systematic Review and Narrative Synthesis
Walklet, E., Muse, K., Meyrick, J., & Moss, T. (2016) · Journal of Neuromuscular Diseases · doi:10.3233/jnd-160155 · Cited by 33
“For example, research has found adults with amyotrophic lateral sclerosis and high well-being have a risk of mortality seven times lower than those experiencing distress, irrespective of disease severity and length of illness [12].”
Method
The influence of personality factors on disease progression and health‐related quality of life in people with ALS
Krampe, H., Bartels, C., Victorson, D., Enders, C. K., Beaumont, J., Cella, D., & Ehrenreich, H. (2008) · Amyotrophic Lateral Sclerosis · doi:10.1080/17482960701875805 · Cited by 31
Clinical aspects of ALS in Gulf War Veterans
Kasarskis, E. J., Lindquist, J. H., Coffman, C. J., Grambow, S. C., Feussner, J. R., Allen, K. D., Oddone, E. Ž., Kamins, K. A., Horner, R. D., & Als Gulf War Clinical Review Team (2008) · Amyotrophic Lateral Sclerosis · doi:10.1080/17482960802351029 · Cited by 31
Efficacy of Hypnosis-Based Treatment in Amyotrophic Lateral Sclerosis: A Pilot Study
Palmieri, A., Kleinbub, J. R., Calvo, V., Sorarú, G., Grasso, I., Messina, I., & Sambin, M. (2012) · Frontiers in Psychology · doi:10.3389/fpsyg.2012.00465 · Cited by 30
Non-invasive ventilation in amyotrophic lateral sclerosis
Vrijsen, B., Testelmans, D., Belge, C., Robberecht, W., Damme, P. V., & Buyse, B. (2013) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.3109/21678421.2012.745568 · Cited by 28
“Other variables related to shorter survival are rapid spread pattern (two regions within three months of onset) (8), psychological distress (27) and body mass index (BMI) 18.”
Background
Quality of life and motor impairment in ALS: Italian validation of ALSAQ
Palmieri, A., Sorarú, G., Lombardi, L., D’Ascenzo, C., Baggio, L., Ermani, M., Pegoraro, E., & Angelini, C. I. (2010) · Neurological Research · doi:10.1179/174313209x385734 · Cited by 28
Balancing between autonomy and support: Coping strategies by patients with amyotrophic lateral sclerosis
Tramonti, F., Bongioanni, P., Fanciullacci, C., & Rossi, B. (2012) · Journal of the Neurological Sciences · doi:10.1016/j.jns.2012.07.006 · Cited by 27
Steroid Profiling in Male Wobbler Mouse, a Model of Amyotrophic Lateral Sclerosis
Deniselle, M. C. G., Lière, P., Pianos, A., Meyer, M., Aprahamian, F., Cambourg, A., Giorgio, N. P. D., Schumacher, M., Nicola, A. F. D., & Guennoun, R. (2016) · Endocrinology · doi:10.1210/en.2016-1244 · Cited by 27
“Furthermore, there is an increased risk for developing ALS in individuals exposed to psychological and physical stress (60) and an accelerated functional decline and shorter life span in individuals displaying high levels of psychological distress (61).”
Background
Das ALS-Depressionsinventar (ADI):
Kübler, A., Winter, S. M., Kaiser, J., Birbaumer, N., & Hautzinger, M. (2005) · Zeitschrift für Klinische Psychologie und Psychotherapie · doi:10.1026/1616-3443.34.1.19 · Cited by 27
Beyond denial and despair: ALS and our heroic potential for hope
Centers, L. C. (2001) · Journal of Palliative Care · doi:10.1177/082585970101700407 · Cited by 26
“Older patients may have higher levels of depression and hopelessness than younger ones, and patients with a rapidly progressive course experie~ce more an~iety than those with slower progresslOn (11).”
Background
Sense Making and Benefit Finding among Patients with Amyotrophic Lateral Sclerosis and Their Primary Caregivers
Mock, S. E., & Boerner, K. (2010) · Journal of Health Psychology · doi:10.1177/1359105309344897 · Cited by 26
Factors Predicting Survival in ALS Patients - Data from a Population-Based Registry in Rhineland-Palatinate, Germany
Wolf, J., Safer, A., Wöhrle, J. C., Palm, F., Nix, W. A., Maschke, M., & Grau, A. (2015) · Neuroepidemiology · doi:10.1159/000381625 · Cited by 25
Frequency and risk factor analysis of cognitive and anxiety-depressive disorders in patients with amyotrophic lateral sclerosis/motor neuron disease
Huang, X., Cui, F., Zhu, W., Zhou, Z., Ren, Y., Li, Y., Mao, L., & Huo, Y. (2015) · Neuropsychiatric Disease and Treatment · doi:10.2147/ndt.s90520 · Cited by 25
Depressive Symptoms and Functional Impairment Among Amyotrophic Lateral Sclerosis Patients in South Korea
Oh, H., Sin, M., Schepp, K. G., & Choi‐Kwon, S. (2012) · Rehabilitation Nursing · doi:10.1002/rnj.00045 · Cited by 24
“…a role in preventing depression (Rabkin et al., 2000), whereas progressive pain, symptoms, and perceived family burden are potential risk factors Rehabilitation Nursing Vol. 37, No. 3 May-June 2012 137 (Ganzini et al., 1999; Ganzini, Johnston, McFarland, Tolle, & Lee, 1998; McDonald et al., 1994).”
BackgroundInfluential
Top Ten Tips Palliative Care Clinicians Should Know About Amyotrophic Lateral Sclerosis
Everett, E. A., Pedowitz, E., Maiser, S., Cohen, J., Besbris, J. M., Mehta, A. K., Chi, L., & Jones, C. A. (2020) · Journal of Palliative Medicine · doi:10.1089/jpm.2020.0046 · Cited by 24
“47 Higher perceived social support and conﬁdence in the patient’s own coping potential may predict less depressed mood, and studies have demonstrated the importance of social networks, family support, and technological aid devices.”
Mood in chronic disease: Questioning the answers
Johnston, M. (1999) · Current Psychology · doi:10.1007/s12144-999-1017-z · Cited by 24
Hope and self-efficacy are associated with better satisfaction with life in people with ALS
Galin, S., Heruti, I., Barak, N., & Gotkine, M. (2018) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2018.1476546 · Cited by 23
Non-Motor Features of Amyotrophic Lateral Sclerosis
Chowdhury, A., Mukherjee, A., Sinharoy, U., Pandit, A., & Biswas, A. (2021) · Annals of Indian Academy of Neurology · doi:10.4103/aian.aian_51_21 · Cited by 22
“[27,28] The presence of depression has a negative effect on the quality of life[29,30] and psychological stress is associated with a greater risk of mortality in patients with ALS.[31] Other NMSs such as poor sleep, pain, fatigue, weight loss, and psychological distress may also contribute to depression.”
Background
Association between depression and survival in Chinese amyotrophic lateral sclerosis patients
Wei, Q., Zheng, Z., Guo, X., Ou, R., Chen, X., Huang, R., Yang, J., & Shang, H. (2016) · Neurological Sciences · doi:10.1007/s10072-015-2472-y · Cited by 22
A randomised controlled trial of acceptance and commitment therapy plus usual care compared to usual care alone for improving psychological health in people with motor neuron disease (COMMEND): study protocol.
Gould, R. L., Thompson, B. J., Rawlinson, C., Kumar, P., White, D., Serfaty, M. A., Graham, C. D., McCracken, L. M., Bursnall, M., Bradburn, M., et al. (2022) · BMC Neurology · doi:10.1186/s12883-022-02950-5 · Cited by 16
The impact of physical impairment on emotional well-being in ALS
Abdulla, S., Vielhaber, S., Kollewe, K., Machts, J., Heinze, H., Dengler, R., & Petri, S. (2014) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.3109/21678421.2014.932380 · Cited by 21
Chapter 20 Symptomatic therapy and palliative aspects of clinical care
Gordon, P. H., & Mitsumoto, H. (2007) · Handbook of clinical neurology · doi:10.1016/s0072-9752(07)80023-6 · Cited by 19
Empathy-based supportive treatment in amyotrophic lateral sclerosis: A pragmatic study
Palmieri, A., Kleinbub, J. R., Pagnini, F., Sorarù, G., & Cipolletta, S. (2021) · American Journal of Clinical Hypnosis · doi:10.1080/00029157.2020.1797623 · Cited by 18
Symptoms of anxiety and depression in patients with amyotrophic lateral sclerosis and their relatives during the disease trajectory.
Larsson, B. J., Nordin, K., & Nygren, I. (2023) · Journal of Neurological Sciences · doi:10.1016/j.jns.2023.122780 · Cited by 18
“…progressive nature of ALS and the knowledge that psychological well-being affects quality of life (3,4), coping (5) as well as survival time in patients with ALS (6,7), there are few studies that examine the occurrence of symptoms of anxiety and depression from the time of diagnosis and over time.”
Identifying poor adaptation to a new diagnosis of motor neuron disease: A pilot study into the value of an early patient-led interview
Hugel, H., Pih, N., Dougan, C. F., Rigby, S., & Young, C. A. (2010) · Amyotrophic Lateral Sclerosis · doi:10.3109/17482960902829205 · Cited by 18
“Psychological adjustment to a diagnosis of MND may also influence survival time as high levels of helplessness, depression and distress have been shown to correlate with shorter survival and higher mortality (19).”
Background
The impact of active coping strategies on survival in ALS: The first pilot study
Montel, S., Albertini, L., Desnuelle, C., & Spitz, É. (2012) · Amyotrophic Lateral Sclerosis · doi:10.3109/17482968.2012.711835 · Cited by 18

Authors: McDonald, E. R.
Corresponding author: McDonald, Evelyn R.
Venue: Archives of Neurology
Publisher: American Medical Association (AMA)
Published: 1994-01-01
Volume: 51
Issue: 1
Pages: 17
ISSN: 0003-9942 (ISSN-L)
DOI: 10.1001/archneur.1994.00540130027010
OpenAlex: W1977988586
Cited by: 193
References: 49
Citations by year: 2025: 3 · 2024: 4 · 2023: 9 · 2022: 3 · 2021: 5 · 2020: 5 · 2019: 7 · 2018: 2 · 2017: 9 · 2016: 9 · 2015: 12 · 2014: 6 · 2013: 6 · 2012: 11
FWCI: 3.93
Type: journal article
Language: en
Open access: closed
Locations: Archives of Neurology (publishedVersion)
PubMed (publishedVersion)
Topics: Health Sciences › Medicine › Clinical Neurology › Amyotrophic Lateral Sclerosis Research
Health Sciences › Medicine › Oncology › Cancer survivorship and care
Health Sciences › Medicine › Genetics (clinical) › Neurogenetic and Muscular Disorders Research
Keywords: amyotrophic lateral sclerosis, psychological distress, psychological well-being, survival, mortality, prognostic factors, psychological state, disease severity, psychometric assessment
MeSH terms: Amyotrophic Lateral Sclerosis, Female, Humans, Male, Mental Health, Middle Aged, Psychiatric Status Rating Scales, Psychological Tests

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Survival in Amyotrophic Lateral Sclerosis: The Role of Psychological Factors

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