Quality of life and motor impairment in ALS: Italian validation of ALSAQ

Palmieri, Arianna; Sorarù, Gian Domenico; Lombardi, Luigi; D’Ascenzo, Carla; Baggio, Laura; Ermani, Mario; Pegoraro, Elena; Angelini, C.

doi:10.1179/174313209x385734

Cited by 24 publications

(35 citation statements)

References 23 publications

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“…Both specific ALS measures of the quality of life employed in the study, namely the ALSSAQOL (Simmons et al, 2006) and the ALSAQ-5 (Jenkinson and Fitzpatrick, 2001; Palmieri et al, 2010b), showed a clear improvement when comparing pre to post treatment mean scores. In particular, the ALSSAQOL “negative emotion” and “spiritually/religiousness” subscales reached the psychometric significance in terms of pre to post treatment improvements, while “interaction” and “physical symptoms” subscales appeared to be marginally significant.…”

Section: Discussionmentioning

confidence: 92%

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Efficacy of Hypnosis-Based Treatment in Amyotrophic Lateral Sclerosis: A Pilot Study

et al. 2012

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Background: Amyotrophic lateral sclerosis (ALS) and its devastating neurodegenerative consequences have an inevitably psychological impact on patients and their caregivers: however, although it would be strongly needed, there is a lack of research on the efficacy of psychological intervention. Our aim was to investigate the effect of hypnosis-based intervention on psychological and perceived physical wellbeing in patients and the indirect effect on caregivers. Methods: We recruited eight ALS volunteers patients as a pilot sample for an hypnosis intervention and self-hypnosis training protocol lasting 1 month. Anxiety and depression level was measured in patients and caregivers at pre and post treatment phase. Quality of life and perceived physical symptoms changes were also investigated in patients. Results: One month pre-post treatment improvement in depression, anxiety, and quality of life was clearly clinically observed and confirmed by psychometric analyses on questionnaire data. Moreover, decreases in physical symptoms such as pain, sleep disorders, emotional lability, and fasciculations were reported by our patients. Improvements in caregiver psychological wellbeing, likely as a consequence of patients psychological and perceived physical symptomatology improvement, were also observed. Conclusion: To the best of our knowledge, even if at a preliminary level, this is the first report on efficacy psychological intervention protocol on ALS patients. The findings provide initial support for using hypnosis and self-hypnosis training to manage some ALS physical consequences and mainly to cope its dramatic psychological implications for patients and, indirectly, for their caregivers.

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Section: Discussionmentioning

confidence: 92%

“…The five-items ALS Assessment Questionnaire (ALSAQ-5), a further, brief specific quality of life measure derived from the broader ALSAQ-40 (Jenkinson and Fitzpatrick, 2001; Palmieri et al, 2010b), was also administered to patients. Items are composed on a five-point Likert scale (ranging 1–5).…”

Section: Methodsmentioning

confidence: 99%

Efficacy of Hypnosis-Based Treatment in Amyotrophic Lateral Sclerosis: A Pilot Study

et al. 2012

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“…Several studies suggest, conversely, that ALS patients' QoL is independent of physical impairment (Simmons et al, 2000; Palmieri et al, 2010b; Pagnini, 2013), a phenomenon known as “disability paradox” (Carr and Higginson, 2001), although this relationship is still unclear and motor disability or ALS physical consequences are likely to play a crucial role in determining QoL (Ganzini et al, 1999; Lo Coco et al, 2005). QoL has also been negatively associated to psychological variables such as suffering, sense of burden and hopelessness and positively related mainly to spirituality (McLeod and Clarke, 2007; Pagnini et al, 2011), caregiver relations (Chiò et al, 2004), and mindful attitude (i.e., not evaluating a situation or a context only through previous categorizations, but actively making new distinctions by assuming multiple viewpoints and perspectives; Pagnini et al, 2014a).…”

Section: Introductionmentioning

confidence: 99%

Hypnosis-based psychodynamic treatment in ALS: a longitudinal study on patients and their caregivers

et al. 2015

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Background: Evidence of psychological treatment efficacy is strongly needed in ALS, particularly regarding long-term effects.Methods: Fifteen patients participated in a hypnosis treatment and self-hypnosis training protocol after an in-depth psychological and neurological evaluation. Patients' primary caregivers and 15 one-by-one matched control patients were considered in the study. Measurements of anxiety, depression and quality of life (QoL) were collected at the baseline, post-treatment, and after 3 and 6 months from the intervention. Bayesian linear mixed-models were used to evaluate the impact of treatment and defense style on patients' anxiety, depression, QoL, and functional impairment (ALSFRS-r), as well as on caregivers' anxiety and depression.Results: The statistical analyses revealed an improvement in psychological variables' scores immediately after the treatment. Amelioration in patients' and caregivers' anxiety as well as caregivers' depression, were found to persist at 3 and 6 months follow-ups. The observed massive use of primitive defense mechanisms was found to have a reliable and constant buffer effect on psychopathological symptoms in both patients and caregivers. Notably, treated patients decline in ALSFRS-r score was observed to be slower than that of control group's patients.Discussion: Our brief psychodynamic hypnosis-based treatment showed efficacy both at psychological and physical levels in patients with ALS, and was indirectly associated to long-lasting benefits in caregivers. The implications of peculiar psychodynamic factors and mind-body techniques are discussed. Future directions should be oriented toward a convergence of our results and further psychological interventions, in order to delineate clinical best practices for ALS.

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“…There was substantial steadiness of QoL in 31 patients over 9 months (Gauthier et al, 2007). No relationship between EMO and muscle strength or functional ability was found in 30 patients (Palmieri et al, 2010). Most of these studies are in accordance with our findings.…”

Section: Discussionmentioning

confidence: 99%

“…This ALS specific QoL measuring tool has demonstrated high validity, consistency, and reliability and appears sensitive to changes that have an impact on the overall status of patients (Jenkinson et al, 1999; Epton et al, 2009). It has been validated in different languages (Yamaguchi et al, 2004; Maessen et al, 2007; Salas et al, 2008; Palmieri et al, 2010; Pavan et al, 2010). …”

Section: Methodsmentioning

confidence: 99%

Self Perceived Emotional Functioning of Spanish Patients with Amyotrophic Lateral Sclerosis: A Longitudinal Study

Mora¹,

Salas²,

Fajardo³

et al. 2013

Front. Psychology

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Background: ALS is a neurodegenerative disease of the entire motor system that most frequently ends with respiratory arrest in few years. Its diagnosis and the rapid progression of the motor dysfunctions produce a continued emotional impact. Studies on this impact are helpful to plan adequate psychotherapeutic strategies. Objective: To assess and analyze: First: How the patients with ALS perceive their emotional health. Second: The emotional impact of their physical disabilities. Third: The physical disabilities with highest emotional impact. Fourth: The feelings with highest emotional impact. Methods: Up to 110 Spanish patients with ALS were assessed less than 1 year from diagnosis, then twice more at 6 month intervals, using the ALS Quality of Life Assessment Questionnaire (ALSAQ-40) validated for use in Spanish. Descriptive analysis and correlation between variables were obtained. Results: Worries about the future, of lack of freedom, and of being a burden were prevalent feelings. On average depression was felt only “sometimes.” Only 25% of the variations in the emotional state were explained by changes in the physical state at first evaluation, and 16% at the last one. Emotional functioning correlated significantly with the physical disabilities at first and second evaluation, less so at third. Communication disabilities always had the highest impact. Depression at first evaluation and hopelessness at the next two evaluations had the highest emotional impact. Hopelessness did not correlate with any physical disability at the third evaluation. On the whole, emotional dysfunction was self perceived as intermediate (between none and worst), and remained stable at 1 year follow up, in both bulbar and spinal onset patients. Conclusions: Physical dysfunctions per se have a limited role in patients´ emotional distress. Communication disabilities, as well as feelings of depression at early stages of illness, and of hopelessness later on, had the most impact. This requires their careful therapeutic attention. On average, Spanish patients with ALS cope with their disease, overcoming depression, which is not felt often, and with just mid levels of emotional dysfunction.

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Quality of life and motor impairment in ALS: Italian validation of ALSAQ

Abstract: Italian ALSAQ-40 and ALSAQ-5 psychometric properties are reliable and similar to those showed by the original English version. We observed emotional aspects to be distinct from physical involvement.

Cited by 24 publications

References 23 publications

Efficacy of Hypnosis-Based Treatment in Amyotrophic Lateral Sclerosis: A Pilot Study

Efficacy of Hypnosis-Based Treatment in Amyotrophic Lateral Sclerosis: A Pilot Study

Hypnosis-based psychodynamic treatment in ALS: a longitudinal study on patients and their caregivers

Self Perceived Emotional Functioning of Spanish Patients with Amyotrophic Lateral Sclerosis: A Longitudinal Study

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