Differences in quality of life modalities give rise to needs of individual support in patients with ALS and their next of kin

2010 ◽  
Vol 8 (1) ◽  
pp. 75-82 ◽  
Author(s):  
Anneli G. Olsson ◽  
Inga Markhede ◽  
Susann Strang ◽  
Lennart I. Persson
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Rating Scale ◽  
Short Form ◽  
Anxiety And Depression ◽  
Next Of Kin ◽  
Sf 36 ◽  
Lateral Sclerosis ◽  
Over Time

AbstractObjective:The aim of this study was to examine health-related quality of life (HRQoL), individual QoL, anxiety and depression in patients with amyotrophic lateral sclerosis (ALS) and their next of kin in relation to patients' physical function over time.Methods:35 patients and their next of kin were studied using the Short Form-36 Health Survey (SF-36), Schedule for Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), and Hospital Anxiety and Depression Scale (HADS) and patients also by the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised and the Norris scale every fourth to sixth month, one to four times.Results:Changes were found over time in both patients and their next of kin in the SF-36 but not in the SEIQoL-DW or HADS. Patients rated worse than their next of kin in the SF-36 physical subscales and next of kin rated worse than the patients in the global QoL score in SEIQoL-DW. Health, hobbies, and total relations were important areas in the SEIQoL-DW among all participants, but some important areas also differed between the patients and their next of kin. In most important areas among the pairs, the next of kin estimated their functioning/satisfaction worse than patients estimated their functioning/satisfaction.Significance of results:There were few changes over time in the QoL among the participants. Although most of the estimates in patients and their next of kin were equal, there were also some differences. These results emphasize the importance of support for both patients and their next of kin and that support ought to be given on both individual bases and together in pairs. The SEIQoL-DW might give signposts in the care through the course of the disease about what should be focused on to increase satisfaction of the important areas of life and might help the person to find coping strategies to handle his or her life situation.

scholarly journals Evaluation of quality of life and mood disorders in caregivers of patients with amyotrophic lateral sclerosis: A single-center cross-sectional study

2021 ◽  
Author(s):  
Ali Asghar Okhovat ◽  
Farzad Fatehi ◽  
Melika Rafiemehr ◽  
Kamyar Moradi ◽  
Gilda Kiani-Mehr ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
General Population ◽  
Mood Disorders ◽  
Rating Scale ◽  
Short Form ◽  
Anxiety And Depression ◽  
Depression And Anxiety ◽  
Lateral Sclerosis

Background: Caregivers of patients with amyotrophic lateral sclerosis (ALS) may suffer from anxiety, depression, and reduced quality of life (QoL). Our goal was to evaluate the QoL and mood disorders in caregivers and their correlation with the patients' demographic, physical, and mental conditions. Methods: We analyzed data from 39 patients with ALS and their caregivers. Patients completed questionnaires of anxiety assessed by Generalised Anxiety Disorder Assessment (GAD-7), depression using the Beck Depression Inventory-II (BDI-II), and QoL via 40-item Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40). Physical impairment was also measured in the patients using the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R). Caregivers were also assessed by BDI-II, GAD-7, and 36-item Short-Form Health Survey questionnaire (SF-36). Results: The prevalence of depression and anxiety in the patients was 82.1% and 71.8%, respectively. Caregivers also had higher rates of anxiety and depression and lower levels of QoL in comparison with the general population (anxiety: 66.7%, depression: 43.6%). Depression and anxiety were considerably associated with worsened QoL in the caregivers. None of the demographic, physical, or mental characteristics of patients with ALS were related to either mood status or QoL of the caregiver population. Conclusion: Caregivers experience higher rates of anxiety and depression and lower QoL in comparison with the general population. The severity of mood disorders is inversely associated with the physical and mental domains of caregivers' QoL. Nonetheless, QoL in the caregivers is not affected by the physical or mental disability of the patients.

Effects of prolonged interruption of rehabilitation routines in amyotrophic lateral sclerosis patients

2021 ◽  
pp. 1-6
Author(s):  
Filipe Gonçalves ◽  
Bruno Magalhães
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Amyotrophic Lateral Sclerosis ◽  
Rating Scale ◽  
Negative Impact ◽  
Short Form ◽  
Physical Symptoms ◽  
Rank Test ◽  
Lateral Sclerosis

Abstract Objective Patients with amyotrophic lateral sclerosis (ALS) experienced prolonged interruption of their rehabilitation palliative care routines due to restrictive COVID-19 pandemic public health measures. This study assesses the effects of before and after the lockdown on functionality rates and quality of life (QoL) in patients with ALS. Methods A longitudinal observational study was conducted. Participants were assessed three times — early January (T0), before mandatory lockdown (T1), and during lockdown (T2) — using the ALS Functional Rating Scale-revised (ALSFRS-R), Fatigue Severity Scale (FSS), and the ALS-Specific Quality of Life-Short Form (ALSSQOL-SF). The paired-sample t-test and Wilcoxon signed-rank test were used. Results Thirty-two patients were included with a mean age of 56.9 (SD 14.2) years and mean symptoms onset of 27.1 (SD 14.3) months. ALSFRS-R mean scores decayed significantly over time when comparing T0–T1 (0.26 ± 0.38) and T1–T2 (1.36 ± 1.43) slopes (p < 0.001). Significant differences were observed between T1 and T2 for ALSSQOL-SF scores (115.31 ± 17.06 vs. 104.31 ± 20.65), especially in four specific domains, and FSS scores (34.06 ± 16.84 vs. 40.09 ± 17.63). Negative correlations between negative emotions and physical symptoms assessed by ALSSQOL-SF and FSS were found. Significance of the results Rehabilitation treatment routines in palliative care, such as physiotherapy and speech therapy, appear to mitigate the ALSFRS-R slope. Prolonged interruption of rehabilitation during the lockdown may have accelerated the functional decline in ALS patients’ motor skills with as measured after 2 months by the ALSFRS-R in the limb and bulbar subscores, but not respiratory subscore. Other short-term effects, increased fatigue and negative impact on QoL, were also verified.

scholarly journals Quality of life in individuals with cervical dystonia before botulinum toxin injection in a Brazilian tertiary care hospital

2011 ◽  
Vol 69 (6) ◽  
pp. 900-904 ◽  
Author(s):  
Mariana Ribeiro Queiroz ◽  
Hsin Fen Chien ◽  
Egberto Reis Barbosa
Keyword(s):  
Quality Of Life ◽  
Botulinum Toxin ◽  
Cervical Dystonia ◽  
Rating Scale ◽  
Short Form ◽  
Tertiary Care ◽  
Residual Effect ◽  
Care Hospital ◽  
Sf 36

OBJECTIVE: The purpose of this study was to evaluate quality of life (QoL) in a Brazilian population of individuals with cervical dystonia (CD) without effect of botulinum toxin (BTx) or with only residual effect of BTx, and identify possible physical and social aspects that affect their QoL. METHOD: Sixty five out of sixty seven consecutive patients with CD were assessed with two instruments: Short-form Health Survey with 36 questions (SF-36) and Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS). RESULTS: Severity of CD (TWSTRS) correlated moderately with two SF-36 subscale: role-physical (r= -0.42) and body pain (r= -0.43). Women also scored worse in two subscale of SF-36: vitality (p<0.05) and mental-health (p<0.005). CONCLUSION: Severity of CD and gender (female) were the main factors related to a worse QoL perception. These findings may help health professionals to predict which characteristics could lead to worse QoL, and therefore, better target their interventions to lessen the burden caused by CD.

Quality of Life in Automated and Continuous Ambulatory Peritoneal Dialysis

2011 ◽  
Vol 31 (2) ◽  
pp. 138-147 ◽  
Author(s):  
Wieneke M. Michels ◽  
Sandra Van Dijk ◽  
Marion Verduijn ◽  
Saskia Le Cessie ◽  
Elisabeth W. Boeschoten ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Peritoneal Dialysis ◽  
Kidney Disease ◽  
Continuous Ambulatory Peritoneal Dialysis ◽  
Short Form ◽  
Summary Score ◽  
Medical Outcomes ◽  
Sf 36 ◽  
Over Time

ObjectiveDespite a lack of strong evidence, automated peritoneal dialysis (APD) is often prescribed on account of an expected better quality of life (QoL) than that expected with continuous ambulatory peritoneal dialysis (CAPD). Our aim was to analyze differences in QoL in patients starting dialysis on APD or on CAPD with a follow-up of 3 years.MethodsAdult patients in the prospective NECOSAD cohort who started dialysis on APD or CAPD were included 3 months after the start of dialysis. The Medical Outcomes Survey Short Form 36 [SF-36 (Medical Outcomes Trust and QualityMetric, Lincoln, RI, USA)] and Kidney Disease and Quality of Life Short Form [KDQOL-SF (KDQOL Working Group, Santa Monica, CA, USA)] questionnaires were used to measure QoL. Differences in QoL over time were calculated using linear mixed models. Patients were followed until transplantation, death, or a first switch to any other dialysis modality.ResultsThe clinical and social characteristics of the 64 APD and 486 CAPD patients were slightly different at baseline. In the crude analysis, the pattern of the mental summary score differed between the modalities ( p = 0.03, adjusted p = 0.06), because of a different pattern for role function emotional ( p = 0.03, adjusted p = 0.05). The pattern of the physical summary score was not different between the groups. Scores on dialysis staff encouragement had a different pattern over time ( p = 0.01), because of an in-equality in scores 3 months after the start of dialysis, which disappeared after 18 months on dialysis. Over time, patients on APD scored higher on sexual function. After adjustment for age, sex, glomerular filtration rate, comorbidity, and primary kidney disease, that difference disappeared. This study showed no major differences in QoL on the KDQOL-SF and the SF-36 between the two modalities.

Correlations in health status between estimates of families of people with amyotrophic lateral sclerosis and estimates of staff

2012 ◽  
Vol 11 (3) ◽  
pp. 183-189 ◽  
Author(s):  
Anneli G. Ozanne ◽  
Lennart I. Persson
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Analogue Scale ◽  
Rating Scale ◽  
Well Being ◽  
Life Situation ◽  
Next Of Kin ◽  
Holistic View ◽  
The Family ◽  
Lateral Sclerosis ◽  
Over Time

AbstractObjective:The aim of this study was to compare self-estimates of the physical, psychological, and general well-being of patients with amyotrophic lateral sclerosis (ALS) and their next of kin with the assessment of the nurses and physician of these participants.Method:The well-being of 35 pairs of patients and their next of kin was rated by themselves, and by a physician and nurses. The well-being was examined over time, using a visual analogue scale (VAS). Patients' physical function was estimated at the same time with the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised and the Norris scale.Results:The correlations between the staff's estimates of the well-being of patients and next of kin were similar to their own estimates, even though staff to a higher degree estimated a decrease in well-being over time among the patients. The estimates by the nurses correlated better to that of the patients and next of kin in psychological and general well-being than the physicians' estimates did.Significance of results:Even though the staff's estimates of participants were roughly equivalent to their self-estimates, there were some differences. This result calls attention to the importance of working in teams in which different professional roles are combined and integrated, making it possible to form a holistic view of the situation of each family. A concern overlooked by one member of staff might be covered by another, and different focuses on the family may give a better composite picture of their life situation, which could lead to better support to the family.

Postoperative quality of life of patients treated for asymptomatic unruptured intracranial aneurysms

2007 ◽  
Vol 107 (6) ◽  
pp. 1086-1091 ◽  
Author(s):  
Shigeo Yamashiro ◽  
Toru Nishi ◽  
Kazunari Koga ◽  
Tomoaki Goto ◽  
Daisuke Muta ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intracranial Aneurysms ◽  
Short Form ◽  
Reference Population ◽  
Anxiety And Depression ◽  
Unruptured Intracranial Aneurysms ◽  
Number Of Patients ◽  
Sf 36 ◽  
Risk Of Rupture

Object The aim of this study was to assess the quality of life (QOL) of patients who underwent surgery for asymptomatic unruptured intracranial aneurysms (UIAs). Methods The authors assessed QOL in 149 patients who had undergone microsurgical clipping of asymptomatic UIAs. They surveyed these patients using universal methods such as the 36-Item Short Form Health Survey (SF-36) for health-related QOL and the Hospital Anxiety and Depression Scale for anxiety and depression assessments. Results The patients' mean scores for each of the eight domains of SF-36 were comparable to those of a Japanese reference population. Analysis of data from the average-QOL and low-QOL subgroups showed that the low-QOL group contained a higher number of patients with preexisting heart diseases and restricted activities of daily living. Operative procedures and complications did not affect QOL. Conclusions Because 86% of the patients who underwent surgery manifested a QOL similar to the reference population, the authors suggest that elective surgery for asymptomatic UIAs is a reasonable treatment, especially in patients who are troubled by the risk of rupture. Postoperative decreases in QOL are not invariably attributable to the operation or its associated complications, but may be correlated with other chronic disorders. To select the appropriate treatment for asymptomatic UIAs, neurosurgeons and patients need information on the expected postoperative QOL.

Amyotrophic Lateral Sclerosis-Specific Quality of Life--Short Form

2018 ◽  
Author(s):  
Stephanie H. Felgoise ◽  
Richard Feinberg ◽  
Helen E. Stephens ◽  
Paul Barkhaus ◽  
Kevin Boylan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Short Form ◽  
Lateral Sclerosis

Subthalamic nucleus deep brain stimulation for severe idiopathic dystonia: impact on severity, neuropsychological status, and quality of life

2007 ◽  
Vol 107 (1) ◽  
pp. 29-36 ◽  
Author(s):  
Galit Kleiner-Fisman ◽  
Grace S. Lin Liang ◽  
Paul J. Moberg ◽  
Anthony C. Ruocco ◽  
Howard I. Hurtig ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Deep Brain Stimulation ◽  
Subthalamic Nucleus ◽  
Brain Stimulation ◽  
Rating Scale ◽  
Short Form ◽  
Spasmodic Torticollis ◽  
Sf 36 ◽  
Deep Brain

Object Medically refractory dystonia has recently been treated using deep brain stimulation (DBS) targeting the globus pallidus internus (GPI). Outcomes have varied depending on the features of the dystonia. There has been limited literature regarding outcomes for refractory dystonia following DBS of the subthalamic nucleus (STN). Methods Four patients with medically refractory, predominantly cervical dystonia underwent STN DBS. Intraoperative assessments with the patients in a state of general anesthesia were performed to determine the extent of fixed deformities that might predict outcome. Patients were rated using the Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS) and the Burke-Fahn-Marsden Dystonia Rating Scale (BFMDRS) preoperatively and 3 and 12 months following surgery by a rater blinded to the study. Mean changes and standard errors of the mean in scores were calculated for each subscore of the two scales. Scores were also analyzed using analysis of variance and probability values were generated. Neuropsychological assessments and quality of life ratings using the 36-Item Short Form Health Survey (SF-36) were evaluated longitudinally. Results Significant improvements were seen in motor (p = 0.04), disability (p = 0.02), and total TWSTRS scores (p = 0.03). Better outcomes were seen in those patients who did not have fixed deformities. There was marked improvement in the mental component score of the SF-36. Neuropsychological function was not definitively impacted as a result of the surgery. Conclusions Deep brain stimulation of the STN is a novel target for dystonia and may be an alternative to GPI DBS. Further studies need to be performed to confirm these conclusions and to determine optimal candidates and stimulation parameters.

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