Social/economic costs and health-related quality of life in patients with rare diseases in Europe

López-Bastida, Julio; Oliva‐Moreno, Juan; Linertová, Renata; Serrano‐Aguilar, Pedro

doi:10.1007/s10198-016-0780-7

Cited by 75 publications

(74 citation statements)

References 42 publications

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“…Direct costs are the most analysed and are presented in most studies, with indirect costs being particularly relevant. Consequently, in line with the health economics literature (Lopez‐Bastida, Oliva‐Moreno, Linertova, & Serrano‐Aguilar, ; Oliva, ; Peña, ; Tuan, ), for many healthcare decision‐makers, it is important to consider a societal perspective in addition to that of healthcare.…”

Section: Methodsmentioning

confidence: 98%

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Understanding the direct and indirect costs of a first episode of psychosis program: Insights from PAFIP of Cantabria, Spain, during the first year of intervention

Son

Ruíz

Foz

et al. 2018

Early Intervention Psych

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Aim: Early intervention psychiatric services for patients with psychosis aim to limit the most damaging outcomes and reduce the patient's risk of social drift, decreasing illness severity and thus containing healthcare costs. There is a scarcity of studies that focus on first-episode psychosis (FEP), and those few that have been published only looked at direct health costs, but not at indirect costs, which make up the bulk of the budget.Our study aims to explore the short-term (1-year follow-up) economic cost of a FEP Program, including both direct and indirect costs. Methods: Data were collected retrospectively from the clinical records of 157 patients included in the Programa Atención Fases Iniciales de Psicosis, from Marqués de Valdecilla University Hospital, Santander. Our data collection sheet collated data from direct and indirect costs associated with the illness. Data were also extracted from the Cantabria Health Service Records. STATA 15.0 was used for statistical analysis.Results: On average, the total costs during the first year were €48 353.51 per patient, with direct healthcare costs being €13 729.47 (28.39%), direct non-medical costs €108.6 (0.22%), and indirect costs €34 515.44 (71.39%). We found that hospitalization costs were higher in males (p = 0.081) and in cannabis users (p = 0.032). The number of relapses increased both, hospitalization and treatment costs (r = 0.40 p = 0.000; r = 0.24 p = 0.067, respectively).Conclusions: Intensive Early Intervention in Psychosis Services may result in cost savings by decreasing hospitalization, premature mortality, disability, unemployment, and legal problems; however, the first year after diagnosis would represent the one with the highest costs. K E Y W O R D Scosts analysis, early intervention services, first episode psychosis, schizophrenia

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Section: Methodsmentioning

confidence: 98%

“…Approval of the research protocol was obtained from the Clinical Research Ethics Committee of Cantabria. Serrano-Aguilar, 2016;Oliva, 2017;Peña, 2013;Tuan, 2008), for many healthcare decision-makers, it is important to consider a societal perspective in addition to that of healthcare.…”

Section: Study Design and Cost Assessmentsmentioning

confidence: 99%

Understanding the direct and indirect costs of a first episode of psychosis program: Insights from PAFIP of Cantabria, Spain, during the first year of intervention

Son

Ruíz

Foz

et al. 2018

Early Intervention Psych

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“…Cystic fibrosis lifetime costs are $2,029,628; Marfan syndrome costs $1,705,470 . For hundreds of disorders, estimated costs are undocumented, but of several disorders investigated, average lifetime cost was $1.6 million …”

Section: Economic Modeling For Cohorts Of 1 Million Patients Eachmentioning

confidence: 99%

“…For CNVs, universal cffDNA does not have impact as those conditions are not detected. Some laboratories now offer a small number of microdeletion tests, but these do not have a significant impact upon the overall incidence and therefore costs …”

Section: Economic Modeling For Cohorts Of 1 Million Patients Eachmentioning

confidence: 99%

“…9 For hundreds of disorders, estimated costs are undocumented, but of several disorders investigated, average lifetime cost was $1.6 million. [9][10][11][12] Next, we modeled the impact of patients' choices when they have options following prenatal diagnosis. At 1 extreme, at a 100% termination rate for DS and CNVs, the $9.5 billion of care would be eliminated.…”

mentioning

confidence: 99%

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The price of abandoning diagnostic testing for cell‐free fetal DNA screening

Evans

Bennett

et al. 2018

Prenatal Diagnosis

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Cost-of-Illness in Rare Diseases

Linertová

García-Pérez

Gorostiza

2017

Advances in Experimental Medicine and Biology

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Cost-of-illness (COI) studies quantify the economic burden of a disease, including direct healthcare and non-healthcare costs and productivity losses. Different approaches can be adopted to evaluate the resources associated to a disease and to calculate the total costs. Prevalence-based studies estimate the total costs of a disease during a given period, while incidence-based studies measure lifetime costs from onset until death. Data can be collected from individuals, using a bottom-up approach, or from population statistics, using a top-down approach. Different perspectives are possible, but the broadest and also mostly used is the societal one. Appropriate discounting should be applied for future costs and a sensitivity analyses of main parameters should be performed. The main limitation of COI studies is that they don't account the outcomes or benefits of possible treatments.There is a lack of COI studies in the field of rare diseases. A multinational COI study (BURQOL-RD) evaluated recently the burden of 10 rare diseases in Europe, using a prevalence-based method with a bottom-up approach to quantify resources from a societal perspective, which is the mostly used methodology for COI studies in rare diseases; however, several other studies illustrate different approaches to conduct COI analysis in this field, such as incidence-based methods or narrower perspectives.COI studies are useful to inform policy-makers about the magnitude of a disease. To support correctly the decision-making process, it is necessary to identify the cost-drivers through COI studies with robust design and standardized methodology.

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Social/economic costs and health-related quality of life in patients with rare diseases in Europe

Cited by 75 publications

References 42 publications

Understanding the direct and indirect costs of a first episode of psychosis program: Insights from PAFIP of Cantabria, Spain, during the first year of intervention

Understanding the direct and indirect costs of a first episode of psychosis program: Insights from PAFIP of Cantabria, Spain, during the first year of intervention

The price of abandoning diagnostic testing for cell‐free fetal DNA screening

Cost-of-Illness in Rare Diseases

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