The SEIQoL-DW for assessing quality of life in ALS: Strengths and limitations

Felgoise, Stephanie H.; Stewart, Jessica; Bremer, Barbara A.; Walsh, Susan; Bromberg, Mark B.; Simmons, Zachary

doi:10.3109/17482960802444840

Cited by 46 publications

(26 citation statements)

References 34 publications

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“…ALSSQOL-r scores (Figure 2) were in line with the normative data for ALS patients (Felgoise et al, 2009; Pagnini and Simmons, 2010) with a mean total score of 6.83 ( SD = 1.10) at T0 and of 7.07 ( SD = 1.14) at T3.…”

Section: Resultssupporting

confidence: 83%

“…With regard to QoL, as measured by ALSSQOL-r (Felgoise et al, 2009) total score, our best possible regression model described an evident effect of intervention, although of only moderate extent. Specifically we observed an improvement at the end of the treatment and after 3 months, while at the 6-months follow-up the scores turned slightly back toward baseline levels.…”

Section: Discussionmentioning

confidence: 80%

“…The Amyotrophic Lateral Sclerosis Specific Quality of Life—revised (ALSSQOL-r; Felgoise et al, 2009; Pagnini and Simmons, 2010), was used to assess different dimensions of health-related QoL. The ALSSQOL-r is a 46 item disease-specific questionnaire using a 0–10 point Likert scale, with 0 being the least desirable situation, and 10 being the most desirable.…”

Section: Methodsmentioning

confidence: 99%

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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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Section: Resultssupporting

confidence: 83%

Section: Discussionmentioning

confidence: 80%

Section: Methodsmentioning

confidence: 99%

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

et al. 2015

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“…It allows individual weights and is considered to be valid to measure sQoL [21,37]. However, it needs to be kept in mind that it measures a different construct than health related measures of quality of life [38].…”

Section: Discussionmentioning

confidence: 99%

Emotional adjustment in amyotrophic lateral sclerosis (ALS)

et al. 2011

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Despite the devastating motor impairment, a significant number of patients with amyotrophic lateral sclerosis (ALS) maintain a good psychosocial adjustment. Here we investigated whether this is specific for ALS or a more general characteristic of terminal disease. Psychosocial adjustment was investigated in 30 ALS patients, 29 cancer patients in palliative treatment and 29 age-, gender- and level of education-matched healthy controls. Subjective quality of life (sQoL), degree of depressive symptoms and coping were evaluated as measures of psychosocial adjustment. Personality factors were described. ALS and cancer patients showed a good psychosocial adjustment. Subjective QoL and depression did not differ significantly. Both patient groups presented a good sQoL. The level of mild depressive symptoms in both patient groups was similar and none showed clinically relevant depression. ALS patients expressed fewer active coping strategies than cancer patients which were explained by gender differences. Both patient groups showed comparable psychosocial adjustment to their disease. Overall, in terminally ill patients the psychological response to the prognosis is not associated with neurobiological changes (e.g., associated with subclinical deficits in ALS) or with physical decline.

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“…Also, its applicability is limited to illnesses in which cognitive functioning or motivating state is impaired such as patients with impaired vision and lack of manual dexterity 13. Moreover, completing the entire tool is time consuming (mean time ~38 minutes), and many participants become confused or exhausted at the second and third stages 12.…”

Section: Introductionmentioning

confidence: 99%

Evaluation of individual quality of life among hemodialysis patients: nominated themes using SEIQoL-adapted

Matlabi

Ahmadzadeh

2016

PPA

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BackgroundQuality of life (QoL) has become an important issue for patients with chronic renal failure diseases who are permanently undergoing hemodialysis. In this study, an adapted schedule for the evaluation of individual quality of life (SEIQoL-adapted) was used to evaluate QoL among hemodialysis patients, to explore their views about the most important aspects of life satisfaction.Methods and resultsA multiple approach design and convenience sampling were applied to recruit 53 patients from a hemodialysis unit in Iran. Data were collected through structured interviews and then analyzed using conventional content analysis. A total score for QoL was calculated using scale guideline. The most important aspects of life were health, family, financial status, living conditions, leisure activities, relationships and socializing, religious and spiritual issues, medical knowledge, and therapies or treatments. The calculated mean QoL score was 66.2, indicating a relatively high life satisfaction. Males had higher QoL scores than females in both married and single groups. Moreover, the relationships between the QoL scores and education, job and marital status were not statistically significant.ConclusionThe SEIQoL-adapted revealed reasonable lay definitions of QoL in a group of patients following chronic renal failure. The patients’ views of the aspects of life could be used by health policy makers, clinicians, and caregivers as a reliable guide to the most important priorities for treatment and medical interventions.

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The SEIQoL-DW for assessing quality of life in ALS: Strengths and limitations

Cited by 46 publications

References 34 publications

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

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

Emotional adjustment in amyotrophic lateral sclerosis (ALS)

Evaluation of individual quality of life among hemodialysis patients: nominated themes using SEIQoL-adapted

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