Demoralization and Quality of Life of Patients with Parkinson Disease

2021 ◽  
pp. 1-7
Author(s):  
Boheng Zhu ◽  
Robert Kohn ◽  
Amar Patel ◽  
Brian B. Koo ◽  
Elan D. Louis ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson Disease ◽  
Behavioral Interventions ◽  
Short Form ◽  
Published Data ◽  
Patient Health ◽  
Related Quality ◽  
Health Related ◽  
Demoralization Scale

Introduction: Demoralization is quite prevalent in patients with Parkinson disease (PD). Unrecognized or untreated, demoralization may progress, at times, to demands for euthanasia and the desire for suicide. Typically, patients with PD do not complain of being “demoralized”; rather, they report disruptions in the quality of their lives. Hence, early identification of disruptions in health-related quality of life (HRQoL) specifically associated with demoralization may prompt earlier recognition and treatment. Published data on such associations, however, could not be found. Alleviation of demoralization in PD is likely to improve treatment outcomes. Objective: This research aimed at identifying the disruptions of HRQoL specifically associated with the demoralization of patients with PD. Methods: Consecutive general hospital outpatients with PD (n = 95) were assessed for: demoralization, with the Diagnostic Criteria for Psychosomatic Research Demoralization Scale (DCPR-D) and the Demoralization Scale (DS); depression, with the Patient Health Questionnaire-9 (PHQ-9); HRQoL, with the Parkinson Disease Questionnaire-Short Form (PDQ-8); sociodemographic variables; medical comorbidities; PD severity; and types of treatment. Results: The prevalence of demoralization was 19%. Regression analyses showed that demoralization was significantly more likely to be experienced by participants who had difficulty with mobility and felt embarrassed in public due to having PD. Demoralization explained HRQoL over and above depression. Conclusions: Stigma and perceived difficulty with mobility are associated with demoralization of PD patients, and they may signal the need for psychotherapeutic and behavioral interventions to prevent the progression to helplessness, hopelessness, demands for euthanasia, and desire for suicide.

scholarly journals Could the choice of patient versus proxy ratings for assessing quality of life in dementia affect resource allocation in health care?

2012 ◽  
Vol 13 (1) ◽  
pp. 25-31
Author(s):  
Jenny Alwin ◽  
Thor-Henrik Brodtkorb
Keyword(s):  
Quality Of Life ◽  
Resource Allocation ◽  
Substantial Effect ◽  
Quality Adjusted Life Year ◽  
Published Data ◽  
Model Of Alzheimer’S Disease ◽  
Patient Health ◽  
Related Quality ◽  
Health Related

OBJECTIVE: The aim of this paper is to demonstrate how the choice of patient versus proxy ratings of patient health-related quality of life (HRQoL) in dementia, for use in cost-effectiveness analyses (CEAs), could potentially affect resource allocation in health care.METHODS:A model of Alzheimer’s disease (AD) based on cognitive ability was used to assess the consequences of using HRQoL ratings from either patients themselves or proxies if a new treatment was to be introduced. The model was based on previously published data on costs related to AD stages as well as HRQoL ratings from AD patients and from their caregivers as proxy raters.RESULTS:The results show that there can be large differences in the results of the CEAs depending on whether the ratings of patients’ HRQoL were made by the patients themselves or by the proxy. When patient self-ratings of HRQoL were used, the cost/quality-adjusted life year (QALY) gained was much higher as compared to the scenario when proxy ratings were used for the same analysis.CONCLUSIONS: The choice of patient self-ratings compared to proxy ratings of patients’ HRQoL can have a substantial effect on the results of CEAs. These differences in results may have an important impact on decision making and, ultimately, on resource allocation. In order to critically appraise the results of CEA studies in dementia we advise that both patient and proxy ratings are used in the CEA. To decide on methodology it is of great importance that focus is directed towards determining the most valid way to measure HRQoL in AD.

Association of Physical Morbidity and Health-Related Quality of Life in a Representative Sample of Older German People

2018 ◽  
Vol 25 (4) ◽  
pp. 140-151
Author(s):  
Markus A. Wirtz ◽  
Matthias Morfeld ◽  
Elmar Brähler ◽  
Andreas Hinz ◽  
Heide Glaesmer
Keyword(s):  
Quality Of Life ◽  
Representative Sample ◽  
Short Form ◽  
Physical Symptoms ◽  
German Population ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Abstract. The association between health-related quality of life (HRQoL; Short-Form Health Survey-12; SF-12) and patient-reported morbidity-related symptoms measured by the Patient Health Questionnaire-15 (PHQ-15) is analyzed in a representative sample of older people in the general German population. Data from 1,659 people aged 60 to 85 years were obtained. Latent class analysis identified six classes of patients, which optimally categorize clusters of physical symptoms the participants reported: musculoskeletal impairments (39.8%), healthy (25.7%), musculoskeletal and respiratory/cardiac impairments (12.8%), musculoskeletal and respiratory impairments, along with bowel and digestion problems (12.9%), general impairments (4.9%), and general impairments with no bowel and digestion problems (4.8%). The participants’ SF-12 Physical Health Scores (η2 = .39) and their Mental Health Scores (η2 = .28) are highly associated with these latent classes. These associations remain virtually identical after controlling for age. The results provide evidence that profiles of patient-reported physical impairments correspond strongly with reduced HRQoL independently from aging processes.

Factors Affecting Health-Related Quality of Life After the Arterial Switch Operation

2021 ◽  
Vol 12 (3) ◽  
pp. 344-351
Author(s):  
Julie Cleuziou ◽  
Anna-Katharina Huber ◽  
Martina Strbad ◽  
Masamichi Ono ◽  
Alfred Hager ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Arterial Switch Operation ◽  
Health Related Quality ◽  
Switch Operation ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
Cardiac Medication

Background: Long-term morbidity and mortality outcomes of the arterial switch operation (ASO) in patients with transposition of the great arteries and Taussig-Bing anomaly are excellent. With an increasing number of patients reaching adolescence and adulthood, more attention is directed toward quality of life. Our study aimed to determine the health-related quality of life (hrQoL) outcomes in patients after the ASO and identify factors influencing their hrQoL. Methods: In this cross-sectional study, hrQoL of patients after ASO was assessed with the German version of the Short Form-36 (SF-36) and the potential association of specified clinical factors was analyzed. Patients of at least 14 years of age who underwent ASO in our institution from 1983 were considered eligible. Results: Of the 355 questionnaires sent to eligible patients, 261 (73%) were available for analysis. Compared to the reference population, patients who had undergone ASO had a significantly higher score in all subscales of the SF-36 except for vitality ( P < .01). Patients with an implanted pacemaker ( P = .002), patients who required at least one reoperation ( P < .001), and patients currently taking cardiac medication ( P < .004) or oral anticoagulation ( P = .036) had lower physical component scores compared to patients without these factors. Conclusions: Patients’ self-assessed and self-reported hrQoL after ASO (using German version of the Short Form 36) is very good. In this population, hrQoL is influenced by reoperation, the need for a pacemaker, and current cardiac medication or anticoagulant use. The development of strategies designed to mitigate or minimize the requirements for, and/or impact of these factors may lead to better hrQoL in this patient population.

Effects of BG-12 (dimethyl fumarate) on health-related quality of life in patients with relapsing–remitting multiple sclerosis: findings from the CONFIRM study

2013 ◽  
Vol 20 (2) ◽  
pp. 253-257 ◽  
Author(s):  
Mariko Kita ◽  
Robert J Fox ◽  
J Theodore Phillips ◽  
Michael Hutchinson ◽  
Eva Havrdova ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Short Form ◽  
Dimethyl Fumarate ◽  
Phase Iii ◽  
Health Related Quality ◽  
Relapsing Remitting ◽  
Related Quality ◽  
Health Related

Multiple sclerosis (MS) has a significant impact on health-related quality of life (HRQoL) with symptoms adversely affecting many aspects of everyday living. BG-12 (dimethyl fumarate) demonstrated significant efficacy in the phase III studies DEFINE and CONFIRM in patients with relapsing–remitting MS. In CONFIRM, HRQoL was worse in patients with greater disability at baseline, and who relapsed during the study, and improved with BG-12 treatment. Mean Short Form-36 Physical Component Summary scores for BG-12 increased over 2 years and scores for placebo decreased. Coupled with clinical and neuroradiological benefits, these HRQoL results further support BG-12 as an effective oral treatment for relapsing MS.

scholarly journals Individual social capital and health-related quality of life among older rural Chinese

2015 ◽  
Vol 37 (2) ◽  
pp. 221-242 ◽  
Author(s):  
XIAOJIE SUN ◽  
KUN LIU ◽  
MARTIN WEBBER ◽  
LIZHENG SHI
Keyword(s):  
Quality Of Life ◽  
Social Capital ◽  
Short Form ◽  
Health Related Quality ◽  
Chinese People ◽  
Individual Social Capital ◽  
Related Quality ◽  
Health Related ◽  
Resource Generator

ABSTRACTNo study based on the Resource Generator has explored the association between individual social capital and health-related quality of life among older adults. This study aims to evaluate the validity and reliability of the adapted Resource Generator-China, and examine the association between individual social capital measured by the Resource Generator-China and health-related quality of life of older rural-dwelling Chinese people. A field survey including 975 rural-dwelling people aged between 60 and 75 years was conducted in three counties of the Shandong Province of China in 2013. Quality of life was measured by the Chinese version of the 36-Item Short Form Health Survey (SF-36): scores of Physical Component Summary and Mental Component Summary. Cumulative scale analyses were performed to analyse the homogeneity and reliability of the Resource Generator-China. We constructed generalised linear models by gender to examine the associations of social capital with health-related quality of life. Our findings suggest that the adapted instrument for older rural-dwelling Chinese people can be a reliable and valid measure of access to individual social capital. There were positive associations between individual social capital (total scores and sub-scale scores) and health-related quality of life. Individual social capital had a stronger association with mental health among women than men. Future studies should be improved through a longitudinal design with a larger and randomised sample covering large geographical rural areas in China.

scholarly journals Health-Related Quality of Life of Older Adults in Costa Rica as Measured by the Short-Form-36 Health Survey

2018 ◽  
Vol 4 ◽  
pp. 233372141878281 ◽  
Author(s):  
Esmeralda Valdivieso-Mora ◽  
Mirjana Ivanisevic ◽  
Leslie A. Shaw ◽  
Mauricio Garnier-Villarreal ◽  
Zachary D. Green ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Costa Rica ◽  
Health Survey ◽  
Short Form ◽  
Health Related Quality ◽  
Short Form 36 ◽  
Related Quality ◽  
Health Related

The relationship between remission and health-related quality of life in a cohort of SLE patients

Rheumatology ◽  
2018 ◽  
Vol 58 (4) ◽  
pp. 628-635 ◽  
Author(s):  
Michel W P Tsang-A-Sjoe ◽  
Irene E M Bultink ◽  
Maaike Heslinga ◽  
Lilian H van Tuyl ◽  
Ronald F van Vollenhoven ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Global Assessment ◽  
Short Form ◽  
Estimating Equation ◽  
Generalized Estimating Equation ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Relationship

Abstract Objective To investigate the relationship between remission and health-related quality of life (HRQoL) in patients with SLE in a longitudinal observational cohort. Methods HRQoL was measured at cohort visits using the physical and mental component score (PCS and MCS, respectively) of the Short Form 36 questionnaire. Definitions of Remission in SLE remission categories (no remission/remission on therapy/remission off therapy) were applied. Determinants of PCS and MCS were identified with simple linear regression analyses. Association between remission and HRQoL was assessed using generalized estimating equation models. Results Data from 154 patients with 2 years of follow-up were analysed. At baseline 60/154 (39.0%) patients were in either form of remission. Patients in remission had higher Short Form 36 scores in all subdomains compared with patients not in remission. PCS was positively associated with remission and employment, and negatively associated with SLICC damage index, ESR, medication, patient global assessment and BMI. MCS was positively associated with Caucasian ethnicity and negatively associated with patient global assessment. In generalized estimating equation analysis, a gradual and significant increase of PCS was observed from patients not in remission (mean PCS 36.0) to remission on therapy (41.8) to remission off therapy (44.8). No significant difference in MCS was found between remission states. Conclusion we show a strong and persistent association between remission and PCS, but not MCS. These results support the relevance (construct validity) of the Definition of Remission in SLE remission definitions and the further development of a treat-to-target approach in SLE.

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