Are people with amyotrophic lateral sclerosis (ALS) particularly nice? An international online case–control study of the Big Five personality factors

Abstract

BackgroundMany people with ALS have been suggested to have a “nice” personality, but most ALS personality studies to date have had limited numbers of participants and have not taken into account personality differences between genders. We used Big Five Inventory data obtained from an online questionnaire looking for risk factors for ALS to investigate personality traits in large numbers of people with ALS and controls.MethodsA total of 741 questionnaire respondents aged 40 years and over indicated the extent to which they agreed with each of the 44 Big Five Inventory statements. Respondents were 339 with ALS (212 male, 127 female) who responded to the statements as they applied to them before their diagnosis and 402 controls (120 male, 282 female). Unpaired t tests with 95% confidence intervals were used to compare mean values of Big Five‐factor scores.ResultsFemale respondents taken together had higher mean scores for Agreeableness and Neuroticism than all male respondents. Male ALS respondents had higher mean scores than male controls for Conscientiousness and Extraversion. Female ALS respondents had higher mean scores than female controls for Agreeableness, Conscientiousness, and Extraversion, and a lower score for Neuroticism.ConclusionsMany people with ALS have personality traits that are likely to underlie the perception they are particularly “nice.” This raises the possibility that genetic polymorphisms that influence personality could play a role in ALS. Furthermore, different personality traits could underlie lifestyle choices that are currently thought to be risk factors for ALS.

The association between lifelong personality and clinical phenotype in the FTD-ALS spectrum

“…This is the key and novel finding of the present study. While only one previous study had investigated ALS patients’ premorbid personality, finding higher levels of Extraversion, Agreeableness, and Conscientiousness in ALS patients relative to healthy controls ( Parkin Kullmann et al, 2018 ), no studies explored premorbid personality as a driving factor for phenotypic variability. Although in line with these results, our study shows that it is the FTD group, rather than the ALS, which deviates from the reference sample.…”

“…Neurologists caring for patients with ALS have variably described them as “pleasant,” “friendly”, “sympathetic”, “nice” ( Wilbourn and Mitsumoto, 1998 ; Borasio and Miller, 2001 ; Mehl et al, 2017 ), emphasizing their active involvement in medical care and their remarkable resilience in coping with their disease. Indeed, since the 1970s several authors have described the peculiar personality profile of patients with ALS in comparison with either healthy controls or patients with other chronic, progressive non-neurodegenerative conditions, suggesting a possible relationship with the etiological factors of the disease ( Brown and Mueller, 1970 ; Peters et al, 1978 ; Grossman et al, 2006 ; Mehl et al, 2017 ; Parkin Kullmann et al, 2018 ).…”

“When Will All of This End?”

“…showed that ALS patients are more agreeable and less neurotic than controls. 4 We should consider whether ALS patients are less depressed because other people are nicer to them. ALS's status as a rare tragedy rather than a chronic disease protects patients from caregiver compassion fatigue, as does the fact that ALS patients are not prone to the psychosis and impulsivity of Alzheimer disease and late Parkinson disease.…”

Coping as a resource to allow for psychosocial adjustment in fatal disease: results from patients with amyotrophic lateral sclerosis

“…However, limited knowledge exists regarding coping traits according to personality traits in ALS, apart from an elevated anxiety trait being associated with decreased quality of life (QoL) (Siciliano et al, 2019 ). The specific personality traits of patients with ALS suggest a strong desire to excel in tasks and a high aim for achievement, compared to healthy controls (Parkin Kullmann et al, 2018 ). However, the extent to which coping traits affect the wellbeing of patients with ALS remains extensively unexplored, prompting us to address this gap.…”