Health-Related Quality of Life Subdomains in Patients with Parkinson's Disease: The Role of Gender.
ABSTRACT: The most frequently used instrument to assess health-related quality of life (HrQoL) in Parkinson's disease (PD) is the Parkinson's Disease Questionnaire 39 (PDQ-39). However, both the dimensionality of the eight PDQ-39 subscales and their summary score recently faced criticism. Furthermore, data on disease-related and neuropsychological determinants and the role of gender on HrQoL in PD are inconclusive yet. Therefore, our aim was to reevaluate the PDQ-39 structure and to further explore determinants of HrQoL in PD. 245 PD patients (age: M?=?69.64, SD?=?8.43; 62.9% male; H&Y: Md?=?3.00; cognitive assessment with PANDA: M?=?24.82, SD?=?3.57) from the baseline database of the Cologne Parkinson Network were used to reevaluate the dimensionality of the PDQ-39 with a principal component analysis (PCA). Multiple regression analyses were conducted to clarify general and domain-specific relationships between clinical, (neuro)psychological, and sociodemographic variables, gender in particular, and HrQoL. The PCA identified three HrQoL domains: physical-functioning, cognition, and socioemotional HrQoL. Depressive symptoms were identified as the most important determinant of HrQoL across all models. Disease-related HrQoL determinants (UPDRS-III, H&Y stage, and LEDD) were less strong and consistent HrQoL determinants than nonmotor symptoms. Analyses did not reveal a global gender effect; however, female gender was a negative predictor for physical-functioning and socioemotional HrQoL, whereas male gender was a negative predictor for cognition HrQoL. Our analyses suggest the consideration of a reevaluation of the PDQ-39. Only the full understanding of HrQoL, its determinants, and their interrelationships will allow the development of PD intervention strategies focusing on what matters the most for patients' HrQoL. Gender is one relevant variable that should be considered in this context.
Project description:<h4>Objectives</h4>Generic and disease-specific health-related quality of life (HRQoL) instruments may reflect different aspects of lives in patients with Parkinson's disease (PD) and thus be associated with different determinants. We used the same cluster of predictors for the generic and disease-specific HRQoL instruments to examine and compare the determinants of HRQoL.<h4>Method</h4>HRQoL was measured in 92 patients with PD by the 36-item Short-Form Health Survey (SF-36) and the 39-item Parkinson's Disease Questionnaire (PDQ-39). The predictors included demographic and disease characteristics, and motor and non-motor symptoms. Multiple regression analyses were used to identify HRQoL determinants.<h4>Results</h4>Depressive symptoms and motor difficulties of daily living were the first two significant determinants for both instruments. The other significant determinant for the SF-36 was fatigue and non-motor difficulties of daily living, and for the PDQ-39 was motor signs of PD.<h4>Conclusions</h4>The results suggest the importance of the evaluation and intervention focused on depressive symptoms and motor difficulties of daily living in patients with PD. In addition, the SF-36 seems more related to non-motor symptoms, while the PDQ-39 appears more associated with motor symptoms. This information is important for understanding results from these two instruments and for choosing which to use.
Project description:The impact of motor- and non-motor symptoms on health-related quality of life (HRQOL) in Parkinson's disease (PD) has received increasing attention.To address this, the study explored a large cohort of patients enrolled in the PD Biomarker Program.The PD Questionnaire-39 (PDQ-39) measured HRQOL, whereas the Unified PD Rating Scale (UPDRS) assessed motor and non-motor symptoms. Determinants of HRQOL in PD patients were identified by stepwise linear regression analysis. The relationship between the PDQ-39 and UPDRS subscale scores then was explored through structural equation modeling.The mean disease duration was 6.8 years and the mean PDQ-39 summary index (PDQ-39SI) was 18.4. UPDRS-I (non-motor function) and UPDRS-II (motor questionnaire) scores demonstrated the strongest correlations with PDQ-39SI (r???0.4, P?<?0.05), whereas UPDRS-III (motor exam) and UPDRS-IV (motor complications) scores were correlated moderately with PDQ-39SI (0.3?<?r?<?0.4, P?<?0.05). Multiple linear stepwise regression analyses showed that age (?=?-0.13, P?<?0.001), education (?=?-0.07, P?=?0.008), UPDRS-I (?=?0.32, P?=?0.000), and UPDRS-II (?=?0.44, P?<?0.001) significantly contributed to HRQOL, and cumulatively accounted for 69.1% of the PDQ-39SI variance. UPDRS-II score was the primary predictor of PDQ-39SI, accounting for 57.3% of the variance, whereas UPDRS-I score accounted for 7.5%. UPDRS-III and -IV and other factors measured did not survive stepwise regression. Structural equation modeling confirmed the association of UPDRS-II (?=?0.67, P?<?0.001) and UPDRS-I (?=?0.35, P?<?0.001) with the PDQ-39SI.Both motor and non-motor function scores impacted significantly HRQOL in PD. UPDRS-III, however, has limited contributions to HRQOL although it is used as a main outcome in many clinical trials.
Project description:<h4>Background</h4>There is a growing recognition that sex characteristics and gender-related aspects can have a substantial impact on the health-related quality of life (HRQoL) of persons with Parkinson's disease (PD). Gender is a multidimensional construct, including dynamic social norms and relations that influence health and impact quality of life. Even when gender is investigated in the field of PD, it is frequently conceptualized as gender identity while other dimensions, such as roles or relations, are generally ignored. The aim of this study was to explore the impact of several gender dimensions on HRQoL among people with PD.<h4>Methods</h4>We performed a survey-based, cross-sectional study in the Netherlands to explore the impact of several gender dimensions, namely; gender identity, gender roles and gender relations on HRQoL (PDQ-39) of people with PD.<h4>Results</h4>In our study population (N = 307), including 127 (41%) women, we did not observe an association between gender identity and overall HRQoL. In contrast, an androgynous gender role and higher engagement in household tasks were associated with better overall HRQoL among people with PD.<h4>Conclusions</h4>This study offers the first detailed description of the impact of different gender dimensions on the HRQoL of people with PD and highlights the need for more precise gender-measures to inform actionable gender-sensitive health interventions for people with PD.
Project description:INTRODUCTION:The Parkinson's disease questionnaire-39 (PDQ-39) is a common measure of health related quality of life (HRQoL) that is widely used with Parkinson disease (PD) patients. Previous evidence suggests that the PDQ-39 reflects at least 8 dimensions (i.e., Emotion, Cognitions, Mobility, etc). To date, little research has examined the external/convergent validity of the Cognitions and Emotional Well-being domains of the PDQ-39. METHODS:A convenience sample of 303 PD patients underwent a comprehensive multi-domain neuropsychological evaluation, including tests of execution function, episodic verbal memory, processing speed, language and working memory, as well as completing measures of depression, apathy, state and trait anxiety and HRQoL (PDQ-39). Hierarchical regressions were conducted in order to examine the relationship between scores on neuropsychological tests and the Cognitions index, as well as mood measures and the Emotional Well-being index of the PDQ-39. RESULTS:Neuropsychological test performance did not account for a significant amount of variance in the PDQ-39 Cognitions index scores. Instead, it was depression that significantly contributed to the Cognitions index, above and beyond neuropsychological performance. The PDQ-39 Emotional Well-being index was also related to mood measures, primarily depression and trait anxiety. CONCLUSIONS:The PDQ-39 Cognition index may be more related to mood functioning, as opposed to cognitive functioning, and should not be considered a "proxy" for cognitive functioning. Future studies are needed to better explain the construct of this index.
Project description:Health-related quality of life (HRQoL) is considered a very important outcome indicator in patients with Parkinson's disease (PD). A broad list of motor and non-motor features have been shown to affect HRQoL in PD, however, there is a dearth of information about the complexity of interrelationships between determinants of HRQoL in different PD phenotypes. We aimed to find independent determinates and the best structural model for HRQoL, also to investigate the heterogeneity in HRQoL between PD patients with different phenotypes regarding onset-age, progression rate and dominant symptom.A broad spectrum of demographic, motor and non-motor characteristics were collected in 157 idiopathic PD patients, namely comorbidity profile, nutritional status, UPDRS (total items), psychiatric symptoms (depression, anxiety), fatigue and psychosocial functioning through physical examination, validated questionnaires and scales. Structural equation model (SEM) and multivariate regressions were applied to find determinants of Parkinson's disease summary index (PDSI) and different domains of HRQoL (PDQ-39).Female sex, anxiety, depression and UPDRS-part II scores were the significant independent determinants of PDSI. A structural model consisting of global motor, global non-motor and co-morbidity indicator as three main components was able to predict 89% of the variance in HRQoL. In older-onset and slow-progression phenotypes, the motor domain showed smaller contribution on HRQoL and the majority of its effects were mediated through non-motor features. Comorbidity component was a significant determinant of HRQoL only among older-onset and non-tremor-dominant PD patients. Fatigue was not a significant indicator of non-motor component to affect HRQoL in rapid-progression PD.Our findings showed outstanding heterogeneities in the pattern and determinants of HRQoL among PD phenotypes. These factors should be considered during the assessments and developing personalized interventions to improve HRQOL in PD patients with different phenotypes or prominent feature.
Project description:<h4>Objective</h4>The prevalence of non-motor symptoms (NMSs) and their impact on health-related quality of life (HRQoL) in Parkinson's disease (PD) has been reported inconsistently among different populations. In this study, we aimed to investigate the NMSs and HRQoL profiles and their correlation in Egyptian PD patients, using a culturally adapted Arabic version of the 39-item Parkinson's disease questionnaire (PDQ-39).<h4>Methods</h4>Ninety-seven PD patients were rated using the unified Parkinson's disease rating scale (UPDRS), the non-motor symptoms scales (NMSS), Beck depression inventory (BDI), and the Arabic version of PDQ-39. We used the Spearman's rank correlation and multiple linear regression analyses to evaluate the relationship between NMSs domains and HRQoL dimensions.<h4>Results</h4>Fatigue/sleep (91.3%) and mood/cognitive disturbances (87%) were the most frequently and severely affected NMSS domains. Other common NMSs included urinary (75.9%), memory/attention (72.4%), gastrointestinal (67.8%), and cardiovascular problems (64.8%). The total NMSS scores were positively correlated with UPDRS I, II, and III scores. Depression was prevalent in 76.7% of PD patients. Moreover, all enrolled PD patients reported impairment in different HRQoL dimensions, especially mobility (98.9%), activities of daily living (97.8%), and emotional well-being (95.5%). The summary index of PDQ-39 was correlated to the total NMSS, UPDRS-I, UPDRS-II Off, UPDRS-III (Off and On states), and BDI scores.<h4>Conclusion</h4>This study showed the high prevalence of NMSs and the value of NMSS and BDI scores as predictors of HRQoL in Egyptian PD patients. Therefore, characterizing the NMSs profile is essential for tailoring management strategies for PD patients.
Project description:Quality of life (QOL) plays an important role in independent living in Parkinson's disease (PD) patients, being crucial to know what factors impact QoL throughout the course of the disease. Here we identified predictors of QoL impairment in PD patients from a Spanish cohort. PD patients recruited from 35 centers of Spain from the COPPADIS cohort from January 2016, to November 2017, were followed up during 2 years. Health-related QoL (HRQoL) and global QoL (GQoL) were assessed with the 39-item Parkinson's disease Questionnaire (PDQ-39) and the EUROHIS-QOL 8-item index (EUROHIS-QOL8), respectively, at baseline (V0) and at 24 months ± 1 month (V2). Clinically significant QoL impairment was defined as presenting an increase (PDQ-39SI) or decrement (EUROHIS-QOL8) at V2 ≥ 10% of the score at baseline (V0). A comparison with a control group was conducted for GQoL. GQoL did not change significantly in PD patients (N = 507; p = 0.686) or in the control group (N = 119; p = 0.192). The mean PDQ-39SI was significantly increased in PD patients (62.7 ± 8.5 years old; 58.8% males; N = 500) by 21.6% (from 16.7 ± 13 to 20.3 ± 16.4; p < 0.0001) at V2. Ninety-three patients (18.6%) presented a clinically significant HRQoL impairment at V2. To be younger (OR = 0.896; 95% CI 0.829-0.968; p = 0.006), to be a female (OR = 4.181; 95% CI 1.422-12.290; p = 0.009), and to have a greater increase in BDI-II (Beck Depression Inventory-II) (OR = 1.139; 95% CI 1.053-1.231; p = 0.001) and NMSS (Non-Motor Symptoms Scale) (OR = 1.052; 95% CI 1.027-1.113; p < 0.0001) total scores from V0 to V2 were associated with clinically significant HRQoL impairment at the 2-year follow-up (Hosmer-Lemeshow test, p = 0.665; R<sup>2</sup> = 0.655). An increase in ≥5 and ≥10 points of BDI-II and NMSS total score at V2 multiplied the probability of presenting clinically significant HRQoL impairment by 5 (OR = 5.453; 95% CI 1.663-17.876; p = 0.005) and 8 (OR = 8.217; 95% CI, 2.975-22.696; p = 0.002), respectively. In conclusion, age, gender, mood, and non-motor impairment were associated with clinically significant HRQoL impairment after the 2-year follow-up in PD patients.
Project description:Background:Parkinson's disease impacts health-related quality of life (HRQoL), however no studies inquired on predictors of HRQoL changes after rehabilitation. This study assessed the relationship between mobility domain of HRQoL measured by Parkinson's Disease Questionnaires-39 (PDQ-39) and clinical-demographic characteristics and developed a model predicting changes after rehabilitation. Methods:Subjects with Parkinson's disease underwent rehabilitation treatment and completed the following predictors: 10-m walking test (10MWT), Timed Up and Go (TUG), Berg Balance scale (BBS), Activities-specific Balance Confidence scales (ABC), Freezing of Gait (FOGQ) and PDQ-39. Two general linear models were calculated to predict the relationship between HRQoL at baseline and to predict HRQoL changes after rehabilitation. Results:Forty-two subjects (age 74.9?±?7.3?years, Hoehn&Yahr 2.8?±?0.6) completed the baseline evaluation. The first model (multiple R2?=?0.59, F?=?5.86, P?<?0.001) showed that ABC (B?=?-?0.51, CI?=?-?0.86 to 0.15, R2?=?0.41, P?=?0.005) and FOGQ (B?=?2.38, CI?=?1.03 to 3.73, R2?=?0.07, P?=?0.001) were statistically significant predictors of mobility aspect of HRQoL at baseline. Thirty seven subjects completed the rehabilitation sessions, data were entered in the second model (multiple R2?=?0.40, F?=?4.24, P?<?0.004) showing that gender (B?=?-?5.12, CI?=?-?9.86 to -?0.39, R2?=?0.23, P?=?0.034), Hoehn&Yahr (B?=?10.93, CI?=?+?3.27 to +?18.61, R2?=?0.22, P?=?0.006) and PDQ-39 mobility at baseline (B?=?-?0.38, CI?=?-?0.63 to -?0.14, R2?=?0.55, P?=?0.002) were statistically significant predictors of changes of the mobility aspect of HRQoL. Conclusions:Balance confidence and Freezing of Gait are associated with the mobility aspect of HRQoL. Changes in mobility domain of HRQoL (as assessed by PDQ-39) are likely to be greater in males, in people at higher stages of the disease and in people with more severe limitation in mobility domain of HRQoL (as assessed by PDQ-39) before rehabilitation. Results might be different when considering different outcomes or different measures for the same outcome (performance mobility test instead of self-report questionnaires). Further investigations are needed to better understand other components of HRQoL in addition to mobility. Trial registration:NCT02713971 registered March 8, 2016.
Project description:Background:Quality of life (QoL) was worse in Parkinson's disease patients with mild cognitive impairment (PD-MCI) or dementia (PDD) than PD patients with normal cognition (PD-NC). The aim of this study was to investigate and compare the potential heterogeneous determinants of QoL in PD patients with different cognitive statuses. Methods:We recruited 600 PD patients, including 185 PD-NC patients, 336 PD-MCI patients and 79 PDD patients, in this cross-sectional study. All patients completed the QoL assessment by the 39-item Parkinson's Disease Questionnaire (PDQ-39), as well as clinical evaluations and neuropsychological tests. The determinants of the QoL were analyzed by multiple stepwise regression analysis. Results:QoL was more impaired across the three groups (PD-NC < PD-MCI < PDD). The Unified Parkinson's Disease Rating Scale part III (UPDRS-III) score, Geriatric Depression Rating Scale (GDS) score and daily levodopa equivalent dose (LED) were independent variables of PDQ-39 in PD-NC patients. The GDS score, disease duration, UPDRS-III score, Epworth Sleepiness Score (ESS) and sex were independent variables of PDQ-39 in PD-MCI patients. The GDS score and disease duration were independent variables of PDQ-39 in PDD patients. Conclusion:The determinants of QoL in PD-NC, PD-MCI and PDD patients were heterogeneous. Motor function was considered to be the most crucial determinant for QoL in PD-NC, while depression was indicated to be the most vital determinant for PD-MCI and PDD. For QoL improvement, clinicians might need to focus more on motor function in PD-NC patients and on depression in PD-MCI and PDD patients.
Project description:<h4>Background</h4>Many patients with Parkinson's disease (PD) who receive carbidopa/levodopa experience symptom reemergence or worsening, or "OFF" episodes. This study assessed the association of "OFF" episodes with health-related quality of life (HRQoL).<h4>Methods</h4>US-specific data from the 2017 and 2019 Adelphi Real World Disease Specific Programme for PD, a real-world cross-sectional survey, were used. Neurologists provided data for 10-12 consecutive patients with PD who completed the 39-item Parkinson's Disease Questionnaire (PDQ-39) and the EuroQol 5-Dimension (EQ-5D). Data were grouped by patients who experienced "OFF" episodes versus those who did not and by average hours of daily "OFF" time. Differences between patient groups were assessed for demographics and clinical characteristics; regression analyses were used to model the relationship between HRQoL and "OFF" episodes with age, sex, body mass index, current PD stage on the Hoehn and Yahr scale, and number of concomitant conditions related and unrelated to mobility as covariates.<h4>Results</h4>Data from 722 patients were analyzed. Overall, 321 patients (44%) had "OFF" episodes (mean of 2.9?h of daily "OFF" time). Patients who experienced "OFF" episodes were less likely to work full-time and more likely to live with family members other than their spouse/partner or reside in a long-term care facility than those without "OFF" episodes. The presence of "OFF" episodes, regardless of the average hours of daily "OFF" time, was significantly associated with high scores (reflecting poor HRQoL) on most PDQ-39 dimensions and the summary index and low scores (reflecting poor health status) on the EQ-5D health utility index, visual analog scale (VAS), and all dimensions. Furthermore, increased average hours of daily "OFF" time was significantly correlated with higher scores for all PDQ-39 dimensions and the summary index, as well as with the EQ-5D health utility index and VAS scores. Patients with "OFF" episodes experienced reduced HRQoL even after correcting for potentially confounding variables.<h4>Conclusions</h4>This study demonstrated that the occurrence of "OFF" episodes in patients with PD is associated with reduced HRQoL and that the impact on HRQoL increased incrementally with increasing average hours of daily "OFF" time.