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Background: Caring for a partner or family member with Parkinson's disease (PD) negatively affects the caregiver's own physical and emotional well-being, especially those caring for people with advanced PD (APD). This study was designed to examine the impact of APD on caregiver perceived burden, quality of life (QoL), and health status., Methods: Dyads of people with PD and their primary caregivers were identified from the Adelphi Parkinson's Disease Specific Program (DSP™) using real-world data from the United States, Japan and five European countries. Questionnaires were used to capture measures of clinical burden (people with PD) and caregiver burden (caregivers)., Results: Data from 721 patient-caregiver dyads in seven countries were captured. Caregivers had a mean age 62.6 years, 71.6% were female, and 70.4% were a spouse. Caregivers for people with APD had a greater perceived burden, were more likely to take medication and had lower caregiver treatment satisfaction than those caring for people with early or intermediate PD; similar findings were observed for caregivers of people with intermediate versus early PD. Caregivers for people with intermediate PD were also less likely to be employed than those with early PD (25.3% vs 42.4%) and spent more time caring (6.6 vs 3.2 h/day)., Conclusions: This real-world study demonstrates that caregivers of people with APD experience a greater burden than those caring for people with early PD. This highlights the importance of including caregiver-centric measures in future studies, and emphasizes the need for implementing treatments that reduce caregiver burden in APD., Trial Registration: N/A., (© 2023. The Author(s).)

Background: 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)., Methods: 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., Results: 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., Conclusions: 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.

Background: Dementia is commonly accompanied by neurobehavioral symptoms; however, the relationship between such symptoms and health-related outcomes is unclear., Objective: To investigate the impact of specific neurobehavioral symptoms in dementia on healthcare resource use (HCRU), patient quality of life (QoL), and caregiver burden., Methods: Data were taken from the 2015/16 Adelphi Real World Dementia Disease Specific Programme™, a point-in-time survey of physicians and their consulting dementia patients. Multiple regression analyses were used to examine associations between patient symptom groups and health-related outcomes., Results: Each patient symptom group of interest (patients with agitation/aggression and related symptoms [AARS] with psychosis, patients with AARS without psychosis, and patients with other behavioral symptoms) had a positive association with HCRU variables (i.e., HCRU was greater), a negative association with proxy measures of patient QoL (i.e., QoL was decreased), and a positive association with caregiver burden (i.e., burden was greater) compared with patients with no behavioral symptoms (control group). The magnitude of effect was generally greatest in patients with AARS with psychosis. Regression analysis covariates that were found to be most often significantly related to the outcomes were dementia severity and the patients' living situation (i.e., whether they were in nursing homes or living in the community)., Conclusion: Combinations of behavioral symptoms, particularly involving AARS plus psychosis, may have a detrimental impact on health-related outcomes such as HCRU, patient QoL, and caregiver burden in dementia. Our results have implications for intervention development in patients who report clusters of symptoms and caregivers, and for identifying at-risk individuals.

Introduction: Patients with chronic kidney disease (CKD) have an increased risk of comorbid conditions, including cardiovascular disease (CVD). Anemia is prevalent in the CKD population and worsens as kidney function declines, resulting in a diminished quality of life and increased morbidity/mortality. The purpose of this secondary analysis was to determine the real-world prevalence of CVD among patients with non-dialysis-dependent CKD (NDD-CKD), with and without comorbid anemia, and to assess the impact of these conditions on quality of life (QoL) and work productivity., Methods: Data were drawn from the Adelphi CKD Disease-Specific Programme, conducted in France, Germany, Italy, Spain, and the UK (2012). Anonymized data were collected via patient record forms and patient-completed questionnaires. Patient data were stratified by anemic status and the presence of CVD comorbidity., Results: Data were collected by physicians for 1993 patients, of whom 867 completed a patient-completed questionnaire. A total of 61.4% of patients had anemia, and the prevalence of anemia increased with CKD stage. Patients with anemia had a higher mean number of cardiovascular comorbidities than non-anemic patients (1.27 vs 0.95, respectively; P < 0.001). The presence of cardiovascular conditions was associated with a significantly reduced QoL (EuroQol EQ-5D-3L visual analog scale: coefficient, -5.68 in anemic patients; P = 0.028) and work productivity and activity impairment (WPAI activity impairment: coefficient, +8.04 in anemic patients; P = 0.032), particularly among anemic patients., Conclusions: The presence of anemia in this cohort of NDD-CKD patients was high. The presence of concomitant cardiovascular conditions was more common in NDD-CKD patients with comorbid anemia, and was associated with reduced QoL and work productivity outcomes.

Background: Multiple sclerosis (MS) is a chronic progressive condition affecting the central nervous system. Progression of MS results in increased level of disability and most patients will eventually experience some degree of functional impairment and impaired mobility. Costs and burdens escalate as MS disability increases. However, there is a lack of recent data on the impact of MS disability on the cost and burden among patients in the US., Methods: Data for this study were drawn from a real world, cross-sectional survey undertaken between 2013 and 2014. Neurologists completed detailed patient report forms (PRF) for the most recent consulting patients with MS (age >18 years). Patient's perceptions of their diagnosis and health-related quality of life (HRQoL) were collected through a patient self-completion questionnaire (PSC). Regression analysis was used to evaluate the relationship between disability (determined by latest Expanded Disability Status Scale [EDSS] score) and current relapse and health care resource utilization, health care costs, HRQoL and work productivity., Results: PRF data were collected for 715 patients (335 also completed a PSC). Patients with higher disability scores (EDSS 3-5 and >5 vs <3 points) and current relapse (vs no current relapse) reported significantly greater health resource utilization for physician visits (p < 0.05) and hospitalizations (p < 0.05) in the preceding 12 months. In addition, they had poorer HRQoL (p < 0.05), were significantly more likely to be unemployed (p < 0.05) and to have had to stop working due to MS (p < 0.05). They also incurred significantly higher health care related costs, including costs for physician consultations, hospitalizations and therapy (p < 0.05). The total costs of care were $51,825, $57,889 and $67,116 for EDSS < 3, EDSS 3-5 and EDSS > 5 groups, respectively; $51,692 and $58,648 for non-relapse and relapse groups, respectively., Conclusions: For MS patients in the US, health resource utilization and healthcare care costs increase with progression of disability. As the disability worsens, patients also exhibit diminished HRQoL and lower work productivity. There is a need for treatments that slow down or delay disability progression among MS patients.

Although psoriasis patients often report a negative impact on health-related quality of life (HRQoL) and work productivity, less is known about how disease burden varies between periods of flare and remission. The aim of this study was tocompare HRQoL and work productivity by disease activity level. Data were extracted from Adelphi 2011/2013 Disease Specific Programmes, two real world surveys of US dermatologists and psoriasis patients. HRQoL was measured using the EuroQOL 5-Dimension Health Questionnaire (EQ-5D) and Dermatology Life Quality Index (DLQI). Work productivity was measured using the Work Productivity Activity index (WPAI). Three levels of disease activity were constructed based on physician reports: remission, active not flaring, active, and flaring. Multivariable regression analyses explored the relationship between disease activity, HRQoL and work productivity, controlling for differences in demographics and comorbidities. Out of 681 psoriasis patients 24% were in remission, 62% had active disease without flaring, and 15% experienced active disease and were currently flaring. Greater disease activity was associated with worse HRQoL. EQ-5D scores decreased with more active disease (remission vs. active not flaring vs. active and flaring: 0.93 vs. 0.90 vs. 0.82; p&lt;0.05), while DLQI scores increased (remission vs. active not flaring vs. active and flaring: 2.0 vs. 5.00 vs. 8.7; p&lt;0.05). WPAI scores increased with disease activity indicating increased productivity loss (remission vs. active not flaring vs. active and flaring: 5.9 vs. 14.8 vs. 26.9; p&lt;0.05). The same trends were confirmed by multivariable regression analyses.

Background: Psoriasis is a chronic disease, and many patients experience itching, painful skin and scaling. The relationship between psoriasis severity and symptom severity, quality of life (QoL) and work productivity is not fully understood., Aim: To examine how QoL, work productivity and clinical symptoms vary between patients with mild, moderate and severe psoriasis., Methods: During a recent US survey, dermatologists provided information on overall disease severity, symptom severity and comorbidities. Patients with psoriasis completed QoL and work productivity instruments: the EuroQoL 5-Dimension Health (EQ-5D) questionnaire, the Dermatology Life Quality Index (DLQI), and the Work Productivity and Activity Impairment (WPAI) questionnaire. Multivariate regression was used to explore the relationship between these outcome variables and psoriasis severity, controlling for differences in demographics and comorbidities., Results: The study analysed 694 patients (55% male; mean age: 44 years); 48%, 46% and 6% had mild, moderate and severe psoriasis, respectively. Scaling was the most common symptom, which was experienced by 82% of patients, followed by itching (73%) and pain (32%). Increased psoriasis severity was associated with increased itching, pain and scaling, and with reduced QoL (decrease in EQ-5D scores: moderate vs. mild -0.04, severe vs. mild -0.18; increase in DLQI: moderate vs. mild 2.97, severe vs. mild 7.95). WPAI scores increased with severity, indicating greater impairment (moderate vs. mild: 11.77, severe vs. mild 18.73)., Conclusions: Patients with more severe psoriasis experienced more severe symptoms and had a greater reduction in QoL and work productivity. It is important that physicians recognize the impact of severe disease on patients' lives and take steps to address this., (© 2016 British Association of Dermatologists.)

Background: Psoriasis patients report that this disease can impact on their health-related quality of life (HR-QoL) and work productivity. It is important to understand how this is influenced by the clinical characteristics of psoriasis such as symptom severity. Common symptoms include itching, pain, and scaling but the psychosocial impact these features have on patients is not well understood., Objective: To explore the impact of psoriasis symptoms (itching, pain, and scaling) on HR-QoL and work productivity., Method: Data were extracted from the Adelphi 2011 and 2013 Psoriasis Disease Specific Programmes - two real world surveys of US dermatologists and their psoriasis patients.  HR-QoL was measured using the Dermatology Life Quality Index (DLQI) and EuroQOL 5-Dimension Health Questionnaire (EQ-5D). Work productivity loss was measured by the Work Productivity and Activity Impairment (WPAI) questionnaire. The impact of symptom severity (none, mild, moderate/severe) for itching, pain, and scaling on DLQI, EQ-5D, and WPAI scores were examined, controlling for differences in demographics and co-morbidities., Results: Patient mean age was 44 years and 55% were male. Moderate/severe itching, pain, and scaling were experienced by 33%, 13%, and 41% of patients, respectively. Controlling for differences in demographics and co-morbidities, increased symptom severity was associated with reduced HR-QoL. Accordingly, EQ-5D scores decreased with itching severity (moderate/severe vs. none: -0.07; 95% confidence interval [CI] =-0.09, -0.04), whereas DLQI scores increased (moderate/severe versus none: 4.9; CI = 3.9, 5.9) (both p&lt;0.05). WPAI scores increased with itching severity, indicating increased work productivity loss (moderate/severe versus none: 17.6, CI = 11.8, 23.5, p&lt;0.05). The same pattern was observed for pain and scaling., Conclusions: Among the patients studied, increased severity of psoriasis-related itching, pain, and scaling was associated with reduced health-related QoL and work productivity.

Aims: Alcohol dependence is associated with high rates of co-occurring disorders which impact health-related quality of life (HRQoL) and add to the cost-of-illness. This study investigated the burden of alcohol dependence and associated co-occurring conditions on health and productivity. Methods: A cross-sectional survey was conducted in eight European countries. Physicians (Psychiatrists and General Practitioners) completed patient record forms, which included assessment of cooccurring conditions, and patients completed matching self-completion forms. Drinking risk level (DRL) was calculated and the relationship between DRL, co-occurring conditions, work productivity, hospitalisations and rehabilitation stays was explored. Results: Data were collected for 2979 alcohol-dependent patients (mean age 48.8 ± 13.6 years; 70% male). In total, 77% of patients suffered from moderate-to-severe co-occurring psychiatric and/or somatic conditions. High DRL was significantly associated with depression, greater work productivity losses, increased hospitalisations and rehabilitation stays. Co-occurring conditions were significantly associated with poorer HRQoL and decreased work productivity, with a statistical trend towards an increased frequency of rehabilitation stays. Conclusions: Alcohol-dependent patients manifest high rates of co-occurring psychiatric and somatic conditions, which are associated with impaired work productivity and HRQoL. The continued burden of illness observed in these already-diagnosed patients suggests an unmet need in both primary and secondary care. [ABSTRACT FROM AUTHOR]

Abstract Background Multiple sclerosis (MS) is a chronic progressive neurological disease and the majority of patients will experience some degree of impaired mobility. We evaluated the prevalence, severity and burden of walking and mobility problems (WMPs) in 5 European countries. Methods This was a cross-sectional, patient record-based study involving 340 neurologists who completed detailed patient record forms (PRF) for patients (>18 years) attending their clinic with MS. Patients were also invited to complete a questionnaire (PSC). Information collected included demographics, disease characteristics, work productivity, quality of life (QoL; EuroQol-5D and Hamburg Quality of Life Questionnaire Multiple Sclerosis [HAQUAMS]) and mobility (subjective patient-reported and objectively measured using the timed 25 foot walk test [T25FW]). Relationships between WMPs and disease and other characteristics were examined using Chi square tests. Analysis of variance was used to examine relationships between mobility measures and work productivity. Results Records were available for 3572 patients of whom 2171 also completed a PSC. WMPs were regarded as the most bothersome symptom by almost half of patients who responded (43%; 291/683). There was a clear, independent and strong directional relationship between severity of WMPs (subjective and objective) and healthcare resource utilisation. Patients with longer T25FW times (indicating greater walking impairment) were significantly more likely to require additional caregiver support (p < 0.0001), visit a variety of healthcare professionals including their primary care physicians (p = 0.0044) and require more long-term non-disease modifying drugs (p = 0.0001). A similar pattern was observed when subjective reporting of the severity of WMPs was considered. Work productivity was also markedly impacted by the presence of WMPs with fewer patients working full time and a reduction in weekly working hours as T25FW times and the subjective severity of WMPs increased. Conclusions In Europe, WMPs in MS represent a considerable personal and social burden both financially and in terms of quality of life. Interventions to improve mobility could have significant benefits for patients and society as a whole.

To describe and characterize health-related quality of life (HRQOL) as measured by the EQ-5D-5L among patients with early-stage HR+/HER2- breast cancer across clinically relevant patient sub-groups. HRQOL was measured through patient completed EQ-5D-5L questionnaires. These results improve our understanding of baseline HRQOL among patients with early disease and may facilitate future studies examining the impact of disease recurrence, including metastasis. [Extracted from the article]

To conduct a cross-walk analysis of the Assessment of SpondyloArthritis International Society Health Index (ASAS HI) to the Ankylosing Spondylitis Quality of Life (ASQoL) in patients with physician confirmed ankylosing spondylitis (AS) or non-radiographic axial spondyloarthritis (nr-axSpA) in the United States. Data were collected from Jun-Aug 2018 via physician-completed patient record forms and patient self-completed forms. Results Data from 63 rheumatologists, 283 AS patients, and 274 nr-axSpA patients were included in this analysis. [Extracted from the article]