scholarly journals Quality of life in isolated dystonia: non-motor manifestations matter

2021 ◽  
pp. jnnp-2020-325193 ◽  
Author(s):  
Johanna Junker ◽  
Brian D Berman ◽  
James Hall ◽  
Deena W Wahba ◽  
Valerie Brandt ◽  
...  

ObjectiveTo evaluate the relationship between health-related quality of life (HR-QoL) and both physical and psychiatric factors in a large, international, multicentre cohort of patients with isolated dystonia, the Dystonia Coalition.MethodsNatural history data from 603 patients with isolated dystonia (median age 57 years (IQR: 48 to 64 years), 67.0% women) were prospectively acquired and analysed. HR-QoL (RAND 36-Item Health Survey), severity of depressive symptoms, generalised anxiety (Hospital Anxiety and Depression Scale) and social anxiety (Liebowitz Social Anxiety Scale) were assessed. Dystonia severity (Burke-Fahn-Marsden Dystonia Rating Scale) and dystonic tremor were examined. Statistical predictors of HR-QoL were calculated using saturated path analysis.ResultsReduced HR-QoL was strongly associated with the degree of depressive symptoms and generalised and social anxiety (8/8 RAND 36 subscales, p≤0.001). Increased dystonia severity was associated with worse physical functioning, physical and emotional role functioning and social functioning (all p≤0.001). The presence of tremor correlated with worse physical functioning and pain (all p≤0.006). Younger age was associated with reduced emotional well-being and vitality (all p≤0.006). There were no HR-QoL differences between sexes.ConclusionHR-QoL in isolated dystonia is strongly associated with psychiatric and physical features. While current standard of care focus on motor aspects of dystonia, comprehensive care should address both physical and mental aspects of health.

2019 ◽  
Vol 18 (2) ◽  
pp. 141-147
Author(s):  
Hanneke Poort ◽  
Jamie M. Jacobs ◽  
William F. Pirl ◽  
Jennifer S. Temel ◽  
Joseph A. Greer

AbstractObjectivesOral treatment (targeted or chemotherapy) for cancer is being increasingly used. While fatigue is a known side effect of intravenous chemotherapy, the rate of fatigue and the impact of fatigue on other patient-reported outcomes are not well described.MethodAt Massachusetts General Hospital Cancer Center, 180 adult patients prescribed oral targeted or chemotherapy for various malignancies enrolled in a randomized controlled trial of adherence and symptom management. Patients completed baseline self-reported measures of fatigue (Brief Fatigue Inventory; BFI), anxiety and depressive symptoms (Hospital Anxiety and Depression Scale; HADS), and quality of life, including subscales for physical, social, emotional, and functional well-being ([QOL] Functional Assessment of Cancer Therapy — General; FACT-G). We examined clinically relevant fatigue using a validated cut-off score for moderate-severe fatigue (BFI global fatigue ≥4) and tested the associations with anxiety symptoms, depressive symptoms, and QOL with independent samples t-tests.ResultsAt baseline, 45 of 180 participants (25.0%) reported moderate-severe fatigue. Fatigued patients experienced more anxiety symptoms (mean diff. 3.73, P < 0.001), more depressive symptoms (mean diff. 4.14, P < 0.001), and worse QOL on the total FACT-G score (mean diff. −19.58, P < 0.001) and all subscales of the FACT-G compared to patients without moderate-severe fatigue.Significance of resultsOne in four patients on oral treatment for cancer experienced clinically relevant fatigue that is associated with greater anxiety and depressive symptoms and worse QOL.


2012 ◽  
Vol 2012 ◽  
pp. 1-5 ◽  
Author(s):  
Wendy E. Balliet ◽  
Shenelle Edwards-Hampton ◽  
Jeffery J. Borckardt ◽  
Katherine Morgan ◽  
David Adams ◽  
...  

Objective. The present study was conducted to determine if depressive symptoms were associated with variability in pain perception and quality of life among patients with nonalcohol-related chronic pancreatitis. Methods. The research design was cross-sectional, and self-report data was collected from 692 patients with nonalcohol-related, intractable pancreatitis. The mean age of the sample was 52.6 (); 41% of the sample were male. Participants completed the MOS SF12 Quality of Life Measure, the Center for Epidemiological Studies 10-item Depression Scale (CESD), and a numeric rating scale measure of “pain on average” from the Brief Pain Inventory. Results. Depressive symptoms were significantly related to participants’ reports of increased pain and decreased quality of life. The mean CESD score of the sample was 10.6 () and 52% of the sample scored above the clinical cutoff for the presence of significant depressive symptomology. Patients scoring above the clinical cutoff on the depression screening measure rated their pain as significantly higher than those below the cutoff () and had significantly lower physical quality of life () and lower mental quality of life (). Conclusion. Although causality cannot be determined based on cross-sectional, correlational data, findings suggest that among patients with nonalcoholic pancreatitis, the presence of depressive symptoms is common and may be a risk factor associated with increased pain and decreased quality of life. Thus, routine screening for depressive symptomology among patients with nonalcoholic pancreatitis may be warranted.


Author(s):  
Christian Oswaldo Acosta Quiroz ◽  
Raquel García-Flores ◽  
Sonia Beatriz Echeverría-Castro

The objective of this study was to evaluate the reliability and validity of the Geriatric Depression Scale in its 15-item version (GDS-15) in Mexican older adults. Participants included 1178 older adults between the ages of 60 and 94 ( M = 69.16, SD = 7.69); 53.9% were women and 55.8% were married or with a partner. They completed the GDS-15, a subjective well-being scale, and a quality-of-life questionnaire. A Kuder–Richardson coefficient of .80 was obtained, which indicates an acceptable internal consistency of the GDS-15, as well as evidence of divergent validity with significant correlations of −.783 with subjective well-being and −.569 with quality of life, in addition to concurrent validity when discriminating between participants with low scores from those with high scores of depressive symptoms. The need for a simple screening tool such as the GDS-15 that helps in the identification of depressive symptoms in Mexican older adults is underlined.


2003 ◽  
Vol 25 (1) ◽  
pp. 31-39 ◽  
Author(s):  
Flávio M F Xavier ◽  
Marcos P T Ferraz ◽  
Norton Marc ◽  
Norma U Escosteguy ◽  
Emílio H Moriguchi

OBJECTIVES: Senescence for some elderly people is a phase of with development and satisfaction, whereas for others is a negative stage of life. The determinants of a good quality of life in old age vary from person to person. The aims of this study were to identify: 1) the prevalence of octogenarian people who evaluate their current life as being mainly characterized by a positive quality and 2) which were the domains that they identified as being the determinants of this positive quality. A same parallel study was conducted with subjects who evaluated senescence as a preponderantly negative experience. METHODS: A random and representative sample of 35% of the octogenarian people, living residing in the community, was selected among the dwellers of the city of Veranópolis, state of Rio Grande do Sul. A semi-structured questionnaire on quality of life quality was applied as well as the scale of depressive symptoms Geriatric Depression Scale (GDS) and the index of general health Cumulative Illness Rating Scale (CIRS). RESULTS: Slightly more than half of the studied sample (57%) defined their current quality of life with positive evaluations, whereas 18% presented a negative evaluation of it. A group 0f 25% defined their current lives as neutral or having both values (positive and negative). Those who were dissatisfied presented more health problems according to the CIRS and more depressive symptoms when evaluated by the GDS. Satisfied subjects ones had different reasons to justify this state, however, the dissatisfied had mainly the lack of health as a reason for their suffering. The main source of reported daily well-being was the involvement with rural or domestic activities. Among the interviewed, lack of health was the main source for not presenting well-being, although there was interpersonal variability regarding what each subject considered as loss of health. CONCLUSION: Possibly, for the elderly subjects a negative quality of life is equivalent to loss of health and a positive life quality is equivalent to a greater range of categories such as activity, income, social life and relationship with the family, categories which differed from subject to subject. Therefore, health seems to be a good indicator of negative quality of life, though an insufficient indicator of successful elderliness.


2011 ◽  
Vol 23 (6) ◽  
pp. 1003-1010 ◽  
Author(s):  
Maria I. Lapid ◽  
Teresa A. Rummans ◽  
Bradley F. Boeve ◽  
Joan K. McCormick ◽  
V. Shane Pankratz ◽  
...  

ABSTRACTBackground: Maintaining and improving quality of life has become a major focus in geriatric medicine, but the oldest old have received limited attention in clinical investigations. We aimed to investigate the relationship between self-perceived and caregiver-perceived quality of life (QOL), cognitive functioning, and depressive symptoms in the oldest old.Methods: This IRB-approved prospective study recruited community dwellers aged 90–99 years old. Collected data included neurological evaluation, DSM III-R criteria for dementia, Mini-Mental State Examination (MMSE), Dementia Rating Scale (DRS), Geriatric Depression Scale (GDS), Record of Independent Living (ROIL), and QOL assessment using the Linear Analogue Self Assessment (LASA).Results: Data on 144 subjects (56 cognitively normal (normal), 13 mild cognitive impairment (MCI), 41 dementia (DEM), 34 dementia with stroke and parkinsonism (DEMSP)) over a three-year period were analyzed. Mean ages ranged from 93 to 94 years, and the majority were female with at least high school education. Overall functional ability was higher in groups without dementia (p < 0.0001). All subjects reported high overall QOL (range 6.76–8.3 out of 10), regardless of cognitive functioning. However, caregivers perceived the subjects’ overall QOL to be lower with increasing severity of cognitive impairment (p < 0.0001). Lower GDS scores correlate with higher self-perceived overall QOL (ρ = −0.38, p < 0.0001).Conclusions: In our community sample of the oldest old, there was a fairly high level of overall QOL, whether or not cognitive impairment exists. Individuals perceive their QOL better than caregivers do, and the difference in subjects’ and caregivers’ perception is more pronounced for the groups with dementia. QOL is more strongly correlated with depressive symptoms than with dementia severity.


1997 ◽  
Vol 12 (4) ◽  
pp. 199-202 ◽  
Author(s):  
H Tuynman-Qua ◽  
F de Jonghe ◽  
S.P. McKenna

SummaryThe joint development of the Dutch and English versions of the Quality of Life in Depression Scale (QLDS) is described. The QLDS is based on the needs model of quality of life developed by Hunt and McKenna. The scale has good reliability and internal consistency. Test-retest correlation coefficients were 0.94 and 0.87 in the United Kingdom and the Netherlands, respectively. Internal consistency alpha-coefficients were 0.95 and 0.92, respectively. The validity of the scale is highly acceptable. The QLDS was shown to correlate relatively highly with established measures of well-being, and scores obtained with the measure were related to severity of depression as assessed by the Hamilton Rating Scale for Depression. The QLDS was shown to be responsive to change in an open study with fluoxetine in 540 patients with major depression. The scale has wide applicability and has been shown to be user-friendly, both for respondents and administrators. It has been, or is in the process of being, tested for reliability and validity in the following additional countries: Australia, Austria, Belgium, Canada, Denmark, France, Germany, Italy, Morocco, Spain and the United States.


2020 ◽  
Vol 16 (2) ◽  
Author(s):  
Janaki V ◽  
Suzaily W ◽  
Abdul Hamid AR ◽  
Hazli Z ◽  
Azmawati MN

Introduction: Auditory hallucination (AH) is often unexplored in depth in clinical practice. This study sought to ascertain the relationship between AH, depressive symptoms and quality of life (QOL) and its association with socio-demographic and clinical variables. Methods: This was a cross sectional study done in a psychiatry unit involving 60 schizophrenic patients between 18 to 60 years old. Psychotic Symptom Rating Scale – Auditory Hallucination subscale (PSYRATS-AH), Calgary Depression Scale for Schizophrenia (CDSS) and World Health Organization Quality of Life-Brief scale (WHOQOL-BREF) were used as instruments. Results: Alcohol intake was found to be significantly associated with the severity of AH. A significant moderate positive correlation was found between AH total score and CDSS (r=0.53, p<0.001) and moderately high correlation between emotional characteristics subscale with CDSS (r=0.651, p<0.005). The PSYRATS-AH dimensions; amount of distress (r=0.721, p<0.001) and intensity of distress (r=0.757, p<0.001) showed significant high correlation with CDSS. As for QOL, frequency of AH (r=-0.419, p<0.01) and CDSS (r=0.435, p<0.01) showed significant moderate negative correlation, while duration, loudness, amount and intensity of distress, disruption to life and controllability of voices had significant fair correlation with QOL. Multiple regression analysis revealed that the frequency of AH (p=0.047), controllability of AH (p=0.027) and depressive symptoms (p=0.001) significantly predict QOL. Conclusion: Our results demonstrated that each dimension of AH had different contributions towards depressive symptoms and the QOL in patients with schizophrenia. Therefore, appropriate treatment focusing on the specific dimension of AH not only may reduce depressive symptoms, but may also improve QOL of these patients.


2013 ◽  
Vol 154 (14) ◽  
pp. 531-537
Author(s):  
István Sal ◽  
Éva Susánszky ◽  
Ildikó Papp

Introduction: Examining the quality of life has a great importance in the treatment of chronic patients. Aim: The aim of the authors was to assess the national status on the basis of the database of the Hungarostudy Health Panel using statistical evaluation. Methods: Three validated questionnaries in the test-battery served as instruments: the shortened version of the WHO Well-being Questionnaire, the Shortened Beck’s Depression Scale Rating and the Illness Intrusiveness Rating Scale. Results: It was found that in accordance with international data, the quality of life index of Hungarian diabetic patients was significantly worse than that of the non-diabetic population. Conclusions: International data also show that the decline in quality of life is correlated with a decline of cooperation and life expectancy of diabetic patients. This explains why methods of behavioral medicine focusing on improving life quality are of great importance, that have not yet been considered currently in psychoeducation. Referring to international examples the authors make a proposal on an extensive survey among Hungarian diabetic patients with the help of validated disease-specific questionnaires and using Transtheoretical Model in order to make education more efficient. Orv. Hetil., 2013, 154, 531–537.


Gerontology ◽  
2021 ◽  
pp. 1-6
Author(s):  
Pietro Gareri ◽  
Stefano Fumagalli ◽  
Alba Malara ◽  
Enrico Mossello ◽  
Caterina Trevisan ◽  
...  

<b><i>Objectives:</i></b> The GeroCovid Study is a multi-setting, multinational, and multi-scope registry that includes the GeroCovid home and outpatients’ care cohort. The present study aims to evaluate whether outpatient and home care services with remote monitoring and consultation could mitigate the impact of the COVID-19 pandemic on mental and affective status, perceived well-being, and personal capabilities of outpatients and home care patients with cognitive disorders. <b><i>Methods:</i></b> Prospectively recorded patients in an electronic web registry provided by BlueCompanion Ltd. Up to October 31, 2020, the sample included 90 patients receiving regular care from the Center for Cognitive Disorders and Dementia in Catanzaro Lido, Italy. It was made of 52 ambulatory outpatients and 38 home care patients, mean age 83.3 ± 7.54 years. Participants underwent a multidimensional assessment at baseline (T0) and after 90 days (T1). For each patient, we administered the Mini-Mental State Examination (MMSE) for cognitive functions, the Activities of Daily Living (ADL) and Instrumental ADL (IADL) scales for functional capabilities, the Cumulative Illness Rating Scale (CIRS) for comorbidities and their impact on patients’ health, the 5-items Geriatric Depression Scale (GDS) for mood, and the Euro Quality of Life (EuroQoL) for perceived quality of life. Contacts with both ambulatory and home care patients were managed in person or via telephone, preferably through video calls (WhatsApp or FaceTime). <b><i>Results:</i></b> Contacts with patients were kept at T0 through telephone. At T1, visits were made in person for over 95% out of the cases. The ADL, IADL, CIRS, GDS, MMSE, and EuroQoL changed slightly between T0 and T1. Most of the patients were clinically stable over time on the majority of the scales explored, but behavioral changes were found in 24.4% of patients and anxiety and insomnia in 17.7% of patients. <b><i>Conclusion:</i></b> Our study suggests that contacts through telephone and video consultations are likely associated with a health status preservation of the patients.


2017 ◽  
Vol 95 (5) ◽  
pp. 419-424
Author(s):  
I. A. Zhukova ◽  
N. G. Zhukova ◽  
V. M. Alifirova ◽  
M. A. Nikitina ◽  
O. P. Izhboldina ◽  
...  

Background. The occurrence of emotional, cognitive, behavioral disorders associated with Parkinson’s disease is on the average 1.5-3 times higher than in the general population of the same age. At least one neuropsychiatric symptom is diagnosed in 77% of the patients and 46% have combination of three or more disturbances. Non-motor disturbances are manifested at all stages of Parkinson’s disease, but information about the relationship between their frequency and manifestations and the duration and severity of the disease is rather contradictory. Aim. To evaluate the prevalence and severity of depression and other non-motor symptoms in patients with Parkinson’s disease. Materials and methods. 206 patients at the average age 65.9±9.7 yr with Parkinson’s disease receiving pharmacotherapy were studied. The clinical assessment was carried out using the Unified Parkinson’s Disease Rating Scale, Hoehn & Yahr Scale, Beck depression inventory II, Hospital anxiety and depression scale, Apathy Scale, Questionnaire for Impulsive-Compulsive Disorders in PD-Rating Scale, Montreal Cognitive Assessment, Parkinson’s Disease Quality of Life Questionnaire- 39, Medical Outcomes Study 36-Item Short Form. Results. 30.9% of the 62 patients with Parkinson’s disease suffered mild, 56 (27.4%) moderate, 21 (10.2%) severe depression and only 67 (32.5%) patients had no depression. The study revealed correlation of depression with apathy (r=0,488; p<0,001), low quality of life according to the PDQ-39 (r=0,471; p<0,001), cognition (r=0,451; p<0,001), emotional well-being (r=0,450; p≤0,001), anxiety (r=0,436; p<0,001). Conclusion. The prevalence of depression in patients with Parkinson’s disease is up to 67.5%. The proportion of patients with severe depression reaches 10.2%. Depression is one of the most frequent non-motor syndromes of Parkinson’s disease deteriorating the quality of life of the patients.


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