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

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.

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

Palliative & Supportive Care ◽

10.1017/s1478951509990733 ◽

2010 ◽

Vol 8 (1) ◽

pp. 75-82 ◽

Cited By ~ 20

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.

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

Palliative & Supportive Care ◽

10.1017/s1478951521000584 ◽

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.

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Impact of Anxiety and Depression on Quality of Life among Patients Undergoing Hemodialysis: A Scoping Review

Evidence-Based Nursing Research ◽

10.47104/ebnrojs3.v2i3.134 ◽

2020 ◽

Vol 2 (3) ◽

pp. 14

Author(s):

Fatima I. AlNashri ◽

Hayfa H. Almutary ◽

Elham A. Al Nagshabandi

Keyword(s):

Quality Of Life ◽

Scoping Review ◽

Short Form ◽

Hemodialysis Patients ◽

Anxiety And Depression ◽

Depression And Anxiety ◽

Life Threatening ◽

Anxiety Depression ◽

The Impact

Context: Chronic kidney disease (CKD) is a life-threatening problem of global concern. Living with CKD is associated with many psychological problems, including depression and anxiety, which can directly or indirectly affect the quality of life. Only one review in the existing literature has assessed these associations among CKD patients using different dialysis modalities. However, the experience of these symptoms could be higher among patients on hemodialysis therapy. In this purview, there is a need to narrow the previous work to be more focused on hemodialysis patients. Aim: This scoping review aims to determine the gaps in the knowledge about the impact of anxiety and depression concerning QOL among people undergoing hemodialysis. Methods: The studies selected were those examined the relationships between depression or/and anxiety with quality of life in adult patients on hemodialysis. The CINAHL, MEDLINE, and Pub Med databases were searched for literature published between January 2012 and December 2019. The quality of the included studies was also apprised. Eleven studies met the inclusion criteria. Results: Six studies examined the impact of depression and anxiety on the quality of life. Five studies identified from the review have examined the relationships between depression and quality of life. It was established that the prevalence of anxiety and depression was high among hemodialysis patients, and the same was associated with low quality of life. Conclusion: The literature review highlights the negative associations between anxiety, depression, and quality of life among hemodialysis patients. It is, therefore, essential to screen hemodialysis patients frequently for anxiety and depression using a short-form questionnaire. This screening would allow for providing early interventions, and the potential deterioration of quality of life could be prevented. Further longitudinal studies are needed to assess these relationships. Additionally, further research is needed to determine effective interventional programs to improve the overall quality of life.

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Do pain, anxiety and depression influence quality of life for people with amyotrophic lateral sclerosis/motor neuron disease? A national study reconciling previous conflicting literature

Journal of Neurology ◽

10.1007/s00415-019-09615-3 ◽

2019 ◽

Vol 267 (3) ◽

pp. 607-615 ◽

Cited By ~ 2

Author(s):

Rhiannon Edge ◽

◽

Roger Mills ◽

Alan Tennant ◽

Peter J. Diggle ◽

...

Keyword(s):

Quality Of Life ◽

Amyotrophic Lateral Sclerosis ◽

Motor Neuron ◽

Motor Neuron Disease ◽

National Study ◽

Future Research ◽

Depression And Anxiety ◽

Patient Reported ◽

Lateral Sclerosis

Abstract Introduction The importance of elucidating the relationships between pain, mood and quality of life (QoL) amongst people with amyotrophic lateral sclerosis/motor neuron disease is evident to clinicians, yet the literature is limited and inconsistent. We explored the relationships between pain, depression, anxiety and QoL to reconcile the previous contrasting findings and inform future research and clinical practice. Methods Patient-reported outcomes were obtained as part of the Trajectories of Outcomes in Neurological Conditions study. Mood and QoL scales underwent Rasch analysis. Correlation coefficients examined the strength of association between variables of interest. A bivariate regression model was developed to examine the effects of pain, depression and anxiety on joint psychological and physical QoL domains. Results Of 636 people with ALS, 69% reported pain, of these most had mild pain. Seven percent (7%) of participants exceeded published cutoffs for probable depression and 14% had probable anxiety. Pain, depression and anxiety all influence quality of life; depression has a significant effect on both physical and psychological domains of QoL, whereas pain affects physical QoL and anxiety psychological QoL. Conclusions These results show the importance of expressing quality of life in a conceptually appropriate way, as failing to take account of the multidimensional nature of QoL can result in important nuances being overlooked. Clinicians must be aware that pain, depression and anxiety all worsen QoL across their ranges, and not just when pain is severe or when anxiety or depression reach case level.

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

PsycTESTS Dataset ◽

10.1037/t77266-000 ◽

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

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Correction to: Do pain, anxiety and depression influence quality of life for people with amyotrophic lateral sclerosis/motor neuron disease? A national study reconciling previous conflicting literature

Journal of Neurology ◽

10.1007/s00415-020-09700-y ◽

2020 ◽

Vol 267 (3) ◽

pp. 616-617

Author(s):

Rhiannon Edge ◽

◽

Roger Mills ◽

Alan Tennant ◽

Peter J. Diggle ◽

...

Keyword(s):

Quality Of Life ◽

Amyotrophic Lateral Sclerosis ◽

Motor Neuron ◽

Motor Neuron Disease ◽

Anxiety And Depression ◽

National Study ◽

Pain Anxiety ◽

Lateral Sclerosis

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Cross-cultural adaptation and validation for the Brazilian population of the instrument Amyotrophic Lateral Sclerosis-Specific Quality of Life–Short Form (ALSSQOL-SF)

Quality of Life Research ◽

10.1007/s11136-019-02342-2 ◽

2019 ◽

Vol 29 (3) ◽

pp. 805-813

Author(s):

Maisa Vitória Gayoso ◽

Flávia Seullner Domingues ◽

Marcondes Cavalcante França Junior ◽

Stephanie H. Felgoise ◽

Acary Souza Bulle Oliveira ◽

...

Keyword(s):

Quality Of Life ◽

Amyotrophic Lateral Sclerosis ◽

Cultural Adaptation ◽

Short Form ◽

Cross Cultural ◽

Brazilian Population ◽

Cross Cultural Adaptation ◽

Lateral Sclerosis

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Chronic Frequent Headache in the General Population: Comorbidity and Quality of Life

Cephalalgia ◽

10.1111/j.1468-2982.2006.01211.x ◽

2006 ◽

Vol 26 (12) ◽

pp. 1443-1450 ◽

Cited By ~ 42

Author(s):

NJ Wiendels ◽

A van Haestregt ◽

A Knuistingh Neven ◽

P Spinhoven ◽

FG Zitman ◽

...

Keyword(s):

Quality Of Life ◽

General Population ◽

Rating Scale ◽

Short Form ◽

Negative Influence ◽

Mean Difference ◽

Headache Frequency ◽

Dutch Version ◽

Comorbidity Scores

We studied the nature and extent of comorbidity of chronic frequent headache (CFH) in the general population and the influence of CFH and comorbidity on quality of life. Subjects with CFH (headache on >14 days/month) were identified in a general health survey. We sent a second questionnaire including questions on comorbidity and quality of life to subjects with CFH and subjects with infrequent headache (IH) (1-4 days/month). We recoded comorbidity by using the Cumulative Illness Rating Scale (CIRS) and measured quality of life with the RAND-36, a Dutch version of Short Form-36. CFH subjects ( n = 176) had higher comorbidity scores than the IH subjects ( n = 141). Mean CIRS scores were 2.94 for CFH and 1.55 for IH [mean difference 1.40, 95% confidence interval (CI) 0.91, 1.89]. The mean number of categories selected was 1.92 in CFH and 1.10 in IH (mean difference 0.82, 95% CI 0.54, 1.11). Fifty percent of CFH subjects had a comorbidity severity level of at least 2, indicating disorders requiring daily medication, compared with 28% of IH subjects (mean difference 22%, 95% CI 12, 33). CFH subjects had more musculoskeletal, gastrointestinal, psychiatric and endocrine/breast pathology than IH subjects. Quality of life in CFH subjects was lower than that of IH subjects in all domains of the RAND-36. Both headache frequency and CIRS score had a negative influence on all domains. We conclude that patients with CFH have more comorbid disorders than patients with infrequent headaches. Many CFH patients have a comorbid chronic condition requiring daily medication. Both high headache frequency and comorbidity contribute to the low quality of life in these patients.

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