In Italy, about 2.000 people a year become ill with ALS, a disease whose psychological aspects are little known. Patients’ psychophysical well-being seems to decline over time, with an increase in depression and/or anxiety, and pathological emotional lability in about 50% of cases (Ingre et al., 2015). Little is known about the causes and risk factors, among which oxidative stress seems relevant (Kuraszkiewicz et al., 2018). This study aims to explore indirect symptomatology and psychosocial factors that may influence ALS (emotional lability, quality of life, and adverse childhood experiences). Patients diagnosed with ALS without psychiatric comorbidities and dementia were involved and completed validated in literature questionnaires: the CNS-LS (Smith et al., 2004) for emotional lability, the CTQ-SF (Sacchi et al., 2018) for adverse childhood experiences, and the ALSSQOL-SF (Gentili et al., 2023) for quality of life, supplemented by sociodemographic and clinical variables. Of the 15 patients (6 females), with mean-severe severity (M=12.86; SD=10.36) and mean age of 71.67 years (SD=9.37), most (73.3%) reported frequent episodes of uncontrolled laughing and/or crying, which decreased the more years elapsed since onset (rs(1)=-.577; p<.024). A good percentage (about 30.0% to 47.0%) experienced childhood trauma of low, moderate, or high severity. On average, quality of life is acceptable (M=5.20; SD=3.55) and increases as more years have elapsed since diagnosis (rs(12)=.602; p=.023). Emotional lability is common in ALS, especially in the early stages. A good percentage of patients have experienced several adverse childhood experiences of various severities. Quality of life is acceptable and seems to improve with time spent in the healthcare facility. Bio-psycho-social caretaking aimed not only at curing but especially at caring is important. Further analysis will delve into the experience of formal and informal caregivers.

In Italia, circa 2000 persone l’anno si ammalano di SLA, malattia di cui sono poco noti gli aspetti psicologici. Il benessere psicofisico dei pazienti sembra diminuire col tempo, con un aumento di depressione e/o ansia, e labilità emotiva patologica in circa il 50% dei casi (Ingre et al., 2015). Poco si sa sulle cause e sui fattori di rischio, tra cui sembra rilevante lo stress ossidativo (Kuraszkiewicz et al., 2018). Lo studio intende approfondire la sintomatologia indiretta e i fattori psicosociali che possono influenzare la SLA (labilità emotiva, qualità di vita e esperienze infantili avverse). Sono stati coinvolti pazienti con diagnosi di SLA senza comorbilità psichiatriche e demenza, che hanno compilato una batteria di questionari validati in letteratura: CNS-LS (Smith et al., 2004) per la labilità emotiva, CTQ-SF (Sacchi et al., 2018) per le esperienze infantili avverse e ALSSQOL-SF (Gentili et al., 2023) per la qualità di vita, integrati da variabili sociodemografiche e cliniche. Dei 15 pazienti (6 donne), con gravità media severa (M=12.86; DS=10.36) e età media di 71.67 anni (DS=9.37), la maggior parte (73.3%) riporta episodi frequenti di riso e/o pianto incontrollati, che diminuiscono più anni trascorrono dall’esordio (rs(13)=-.577; p<.024). Una buona percentuale (dal 30.0% al 47.0% ca.) ha subito traumi infantili di gravità bassa, moderata o alta. In media la qualità di vita è accettabile (M=5.20; DS=3.55) e aumenta più anni trascorrono dalla diagnosi (rs(12)=.602; p=.023). La labilità emotiva è comune nella SLA, soprattutto nelle fasi iniziali. Una buona percentuale di pazienti ha vissuto traumi infantili di varie gravità. La qualità di vita è accettabile, e sembra migliorare col tempo trascorso in struttura. È importante una presa in carico bio-psico-sociale volta non solo a curare (to cure) ma soprattutto a prendersi cura (to care). Ulteriori analisi approfondiranno il vissuto di caregivers formali e informali.

(2024). Emotions, trauma, and quality of life in ALS patients: preliminary results . Retrieved from https://hdl.handle.net/10446/303409

Emotions, trauma, and quality of life in ALS patients: preliminary results

Zambetti, Elisa;Mucci, Clara;Greco, Andrea
2024-01-01

Abstract

In Italy, about 2.000 people a year become ill with ALS, a disease whose psychological aspects are little known. Patients’ psychophysical well-being seems to decline over time, with an increase in depression and/or anxiety, and pathological emotional lability in about 50% of cases (Ingre et al., 2015). Little is known about the causes and risk factors, among which oxidative stress seems relevant (Kuraszkiewicz et al., 2018). This study aims to explore indirect symptomatology and psychosocial factors that may influence ALS (emotional lability, quality of life, and adverse childhood experiences). Patients diagnosed with ALS without psychiatric comorbidities and dementia were involved and completed validated in literature questionnaires: the CNS-LS (Smith et al., 2004) for emotional lability, the CTQ-SF (Sacchi et al., 2018) for adverse childhood experiences, and the ALSSQOL-SF (Gentili et al., 2023) for quality of life, supplemented by sociodemographic and clinical variables. Of the 15 patients (6 females), with mean-severe severity (M=12.86; SD=10.36) and mean age of 71.67 years (SD=9.37), most (73.3%) reported frequent episodes of uncontrolled laughing and/or crying, which decreased the more years elapsed since onset (rs(1)=-.577; p<.024). A good percentage (about 30.0% to 47.0%) experienced childhood trauma of low, moderate, or high severity. On average, quality of life is acceptable (M=5.20; SD=3.55) and increases as more years have elapsed since diagnosis (rs(12)=.602; p=.023). Emotional lability is common in ALS, especially in the early stages. A good percentage of patients have experienced several adverse childhood experiences of various severities. Quality of life is acceptable and seems to improve with time spent in the healthcare facility. Bio-psycho-social caretaking aimed not only at curing but especially at caring is important. Further analysis will delve into the experience of formal and informal caregivers.
2024
Zambetti, Elisa; Baronchelli, Irene; Manzoni, Paola; Mucci, Clara; Greco, Andrea
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