Objectives: To investigate the association between clinical, demographic, and organizational factors and formal (health professionals) and informal (relatives) resource utilization in nursing home... Show moreObjectives: To investigate the association between clinical, demographic, and organizational factors and formal (health professionals) and informal (relatives) resource utilization in nursing home patients with and without dementia. Methods: Baseline data from the multicomponent cluster randomized control COSMOS trial including 33 Norwegian nursing homes and 723 residents with and without dementia. Nursing home staff (n = 117) participated as proxy raters to approximate formal and informal resource use in daily care. Measurements: The primary outcome was the Resource Utilization in Dementia - Formal Care scale to assess formal and informal care time in hours/month regarding basic activities of daily living (ADL), instrumental ADL, and supervision. Secondary outcomes were hours/week spent on formal and informal leisure activities. Behavioral and psychological symptoms in dementia (BPSD) were assessed by the Neuropsychiatric Inventory-Nursing Home version, physical function by the Physical Self-Maintenance Scale, and psychotropic drug use by the Anatomical Therapeutic Chemical classification system. Organizational factors were ward size and staff ratio. Results: Generalized linear mixed-effect models and two-part modelling revealed an association between increased formal care time and poorer physical function, higher agitation and psychotropic drug use and lower cognitive function (all p < .05). Enhanced formal leisure time was related to better ADL function (p < .05) and smaller wards (p < .05). The family related leisure time was associated with agitation, decline in ADL function, smaller wards, and better staffing ratio (all p < .05). Married patients received more informal direct care (p < .05) and leisure time (p < .05) compared to unmarried/widowed. Conclusion: For nursing home staff, higher agitation and psychotropic drug use, and lower cognitive function, is associated with more direct care time, whereas leisure time activities are less prioritized in people with lower physical function. Informal caregivers' engagement is encouraged by smaller nursing homes and better staff ratio. Therefore, we recommend stakeholders and healthcare professionals to consider these clinical and organizational factors to optimize treatment and leisure time activities in nursing home patients with various needs. Show less
Lopez-Bastida, J.; Aranda-Reneo, I.; Rodriguez-Sanchez, B.; Pena-Longobardo, L.M.; Ye, X.; Laeis, P.; ... ; Sande, M.A.J. van de 2021
Background Tenosynovial Giant-Cell Tumour (TGCT) is a benign clonal neoplastic proliferation arising from the synovium, causing a variety of symptoms and often requiring repetitive surgery. This... Show moreBackground Tenosynovial Giant-Cell Tumour (TGCT) is a benign clonal neoplastic proliferation arising from the synovium, causing a variety of symptoms and often requiring repetitive surgery. This study aims to define the economic burden-from a societal perspective-associated with TGCT patients and their health-related quality of life (HRQOL) in six European countries. Methods This article analyses data from a multinational, multicentre, prospective observational registry, the TGCT Observational Platform Project (TOPP), involving hospitals and tertiary sarcoma centres from six European countries (Austria, France, Germany, Italy, the Netherlands, and Spain). It includes information on TGCT patients' health-related quality of life and healthcare and non-healthcare resources used at baseline (the 12-month period prior to the patients entering the registry) and after 12 months of follow-up. Results 146 TGCT patients enrolled for the study, of which 137 fulfilled the inclusion criteria. Their mean age was 44.5 years, and 62% were female. The annual average total costs associated with TGCT were euro4866 at baseline and euro5160 at the 12-month follow-up visit. The annual average healthcare costs associated with TGCT were euro4620 at baseline, of which 67% and 18% corresponded to surgery and medical visits, respectively. At the 12-month follow-up, the mean healthcare costs amounted to euro5094, with surgery representing 70% of total costs. Loss of productivity represented, on average, 5% of the total cost at baseline and 1.3% at follow-up. The most-affected HRQOL dimensions, measured with the EQ-5D-5L instrument, were pain or discomfort, mobility, and the performance of usual activities, both at baseline and at the follow-up visit. Regarding HRQOL, patients declared a mean index score of 0.75 at baseline and 0.76 at the 12-month follow-up. Conclusion The results suggest that TGCT places a heavy burden on its sufferers, which increases after one year of follow-up, mainly due to the healthcare resources required-in particular, surgical procedures. As a result, this condition has a high economic impact on healthcare budgets, while the HRQOL of TGCT patients substantially deteriorates over time. Show less
Huygens, S.A.; Kley, F. van der; Bekkers, J.A.; Bogers, A.J.J.C.; Takkenberg, J.J.M.; Rutten-van Molken, M.P.M.H. 2019
OBJECTIVES Our aim was to provide estimates of patient-reported health-related quality of life (HRQoL), use of informal care and productivity in patients after surgical aortic and pulmonary valve... Show moreOBJECTIVES Our aim was to provide estimates of patient-reported health-related quality of life (HRQoL), use of informal care and productivity in patients after surgical aortic and pulmonary valve replacement and transcatheter aortic valve implantation.METHODS Consecutive cohorts of 1239 adult patients who had surgical aortic valve replacement or surgical pulmonary valve replacement and 433 patients who had transcatheter aortic valve implantation at 2 Dutch heart centres were cross-sectionally surveyed at a median time of 2.9 and 3.2years after the intervention, respectively. The survey included questions on HRQoL (EQ-5D-5L and SF-12-v2), use of informal care and productivity in paid and unpaid work. All outcomes were compared with age and sex-matched individuals from the general population.RESULTS The response rate was 56% (n=687) of patients who had surgical valve replacement and 59% (n=257) of those who had transcatheter aortic valve implantation. Compared with the general population, patients reported poorer HRQoL on physical health domains, whereas their scores were comparable for mental health domains. After a heart valve implantation, patients reported using informal care more frequently than the general population, but labour participation was comparable. Patients with late complications [antibiotic treatment for endocarditis (n=4), stroke (n=11), transient ischaemic attack (n=15)] reported lower HRQoL, greater use of informal care and greater productivity loss than patients without complications.CONCLUSIONS Patients who had aortic and pulmonary valve implantations experience relatively mild limitations in daily life compared to the general population. The consequences of a heart valve implantations beyond clinical outcomes should be considered to create realistic patient expectations of life after a heart valve implantation and unbiased resource allocation decisions at national levels. Show less
