Cross‐sectional and longitudinal correlations between disease progression and different health‐related quality of life domains in persons with amyotrophic lateral sclerosis

Groot, I. de; Post, Marcel W.M.; Heuveln, Tineke van; Berg, Leonard H van den; Lindeman, Eline

doi:10.1080/17482960701553949

Cited by 34 publications

(25 citation statements)

References 36 publications

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“…In agreement with this association, although demonstrated by our analysis as only “correlational” and not causal, QoL may be considered mainly dependent on psychological and existential factors in ALS (Simmons et al, 2000), thus inducing to emphasize the role of spiritual aspects and support systems in therapeutic interventions. However, “Mental Health” and “Role Emotional” domains of SF-36 have been demonstrated less impaired during the ALS course in comparison to “Physical Functioning” and “Role Physical” domains (De Groot et al, 2007), thereby depicting diverging patterns between “physical” and “mental health” domains of QoL in those patients.…”

Section: Discussionmentioning

confidence: 98%

Theory of Mind and Its Neuropsychological and Quality of Life Correlates in the Early Stages of Amyotrophic Lateral Sclerosis

et al. 2016

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This study aims to explore the potential impairment of Theory of Mind (ToM; i.e., the ability to represent cognitive and affective mental states to both self and others) and the clinical, neuropsychological and Quality of Life (QoL) correlates of these cognitive abnormalities in the early stages of amyotrophic lateral sclerosis (ALS), a multisystem neurodegenerative disease recently recognized as a part of the same clinical and pathological spectrum of frontotemporal lobar degeneration. Twenty-two consecutive, cognitively intact ALS patients, and 15 healthy controls, underwent assessment of executive, verbal comprehension, visuospatial, behavioral, and QoL measures, as well as of the ToM abilities by Emotion Attribution Task (EAT), Advanced Test of ToM (ATT), and Eyes Task (ET). ALS patients obtained significantly lower scores than controls on EAT and ET. No significant difference was found between the two groups on ATT. As regard to type of ALS onset, patients with bulbar onset performed worse than those with spinal onset on ET. Correlation analysis revealed that EAT and ET were positively correlated with education, memory prose, visuo-spatial performances, and “Mental Health” scores among QoL items. Our results suggest that not only “cognitive” but also “affective” subcomponents of ToM may be impaired in the early stages of ALS, with significant linkage to disease onset and dysfunctions of less executively demanding conditions, causing potential impact on patients’ “Mental Health.”

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Section: Discussionmentioning

confidence: 98%

Theory of Mind and Its Neuropsychological and Quality of Life Correlates in the Early Stages of Amyotrophic Lateral Sclerosis

et al. 2016

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“…However, the validation studies were undertaken by the developers of this questionnaire and further independent studies are required to confirm these results [12]. The domains of the HRQoL most reduced in ALS are related to physical health, whereas domains related to mental health seem to remain intact [8,20]. The number of studies on other NMDs is considerably lower and only a few are available for myasthenia gravis (MG) and facioscapulohumeral muscular dystrophy (FSHD).…”

Section: Presents a Summary Of Hrqolstudies In Nmds On The Examples Omentioning

confidence: 99%

Health-related quality of life in ALS, myasthenia gravis and facioscapulohumeral muscular dystrophy

et al. 2010

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Neuromuscular disorders are rare diseases with a chronic and debilitating course. Unfortunately, data on the health-related quality of life (HRQoL) in neuromuscular diseases are limited. The objective of this multicentre cross-sectional study was to compare the HRQoL in patients with amyotrophic lateral sclerosis (ALS), facioscapulohumeral muscular dystrophy (FSHD) and myasthenia gravis (MG) and to identify the determinants of the HRQoL in these diseases. We recruited 91 consecutive outpatients with ALS (n = 37), FSHD (n = 17) or MG (n = 37) in seven specialized German health centres. The HRQoL was determined using the 36-Item Short Form Health Survey (SF-36) and the EuroQol (EQ-5D). Independent predictors of the HRQoL were identified using multiple regression analysis. The HRQoL in all domains of the SF-36, except for bodily pain, was significantly reduced. The domains related to physical health (physical functioning, physical role) were most affected. The EQ-5D-index score was most reduced in ALS (0.54) and least reduced in MG (0.89). Independent predictors of a reduced HRQoL were disease severity and depression in ALS, and disease severity, depression, older age and increased body-mass index in MG. The patterns of HRQoL-impairment in neuromuscular disorders share some common features, such as a more pronounced reduction in the HRQoL related to physical health, but there are a number of disease-specific features that should be considered in outcomes of clinical trials and treatment guidelines. In addition to the treatment of motor symptoms, greater attention should be paid to the treatment of depression, which was found to be among the independent predictors of the HRQoL in ALS and MG.

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“…Anxiety can be treated with psychotherapy and training in relaxation and breathing techniques as well as participation in support groups. With good support, mental health and quality of life can remain stable despite deteriorating physical health [32]. In addition, an often-neglected part of rehabilitation in MND is support for continuation of work [33].…”

Section: Discussionmentioning

confidence: 99%

Identification of Personal Factors in Motor Neurone Disease: A Pilot Study

Khan

2011

Rehabilitation Research and Practice

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Motor neurone disease (MND) is a devastating condition. This preliminary study aims to identify relevant personal factors affecting the experience of living with MND from the perspective of persons with MND (pwMND) in an Australian cohort. A prospective cross-sectional survey of pwMND (n = 44) using an open-ended questionnaire identified personal factors that were categorised thematically. Standardised questionnaires assessed disease severity: depression, anxiety, and stress and coping strategies. Personal factors identified included demographic factors (socioeconomic status), emotional states (depression, anxiety, and fear), coping strategies (problem-based coping and denial), personality, beliefs (religious and personal values), attitudes (of the patient), and others (such as perceived support). An understanding of personal factors by treating clinicians is essential in the provision of optimal care in MND. This study may assist in the development of personal factors within the International Classification of Functioning, Disability, and Health for improved consensus of care and communication amongst treating clinicians.

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Cross‐sectional and longitudinal correlations between disease progression and different health‐related quality of life domains in persons with amyotrophic lateral sclerosis

Cited by 34 publications

References 36 publications

Theory of Mind and Its Neuropsychological and Quality of Life Correlates in the Early Stages of Amyotrophic Lateral Sclerosis

Theory of Mind and Its Neuropsychological and Quality of Life Correlates in the Early Stages of Amyotrophic Lateral Sclerosis

Health-related quality of life in ALS, myasthenia gravis and facioscapulohumeral muscular dystrophy

Identification of Personal Factors in Motor Neurone Disease: A Pilot Study

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