Cost of illness in Charcot-Marie-Tooth neuropathy

Neurology ◽  
2019 ◽  
Vol 92 (17) ◽  
pp. e2027-e2037 ◽  
Author(s):  
Elisabeth Schorling ◽  
Simone Thiele ◽  
Laura Gumbert ◽  
Sabine Krause ◽  
Constanze Klug ◽  
...  
Keyword(s):  
Disease Severity ◽  
Informal Care ◽  
Cost Of Illness ◽  
Annual Cost ◽  
Multivariate Regression Analysis ◽  
Health Care Use ◽  
Total Annual Cost ◽  
Total Cost ◽  
Charcot Marie Tooth ◽  
Patient Reported

ObjectiveTo assess cost associated with the disease-specific need of patients diagnosed with Charcot-Marie-Tooth neuropathies (CMT) in Germany.MethodsPatients with CMT were identified through the national patient registry and invited to complete a standardized questionnaire. The data collected include information about health care use, informal care, and other disease-related expenses as well as the working situation. Based on this information, we estimated the annual cost of CMT from the perspective of society.ResultsThis study included 397 patients with a genetically confirmed CMT diagnosis. We estimated total annual cost of illness (COI) of $22,362 (95% CI $19,464–$25,723) per patient, of which 67.3% were direct costs. The highest single cost factor was informal care cost. For Germany, we extrapolated total cost of CMT of $735.0 million ($639.8 million–$845.5 million). Multivariate regression analysis showed that total annual cost increased with disease severity (Charcot-Marie-Tooth Neuropathy Score). Age, CMT subtype, comorbidities, body mass index, and employment status were also predictors of a change in cost (p < 0.05). Moreover, we found differences in total cost depending on marital status, subjectively evaluated impairments, dependence on other persons, care level, educational level, and disease duration.ConclusionsCMT is associated with a substantial economic burden. For the first time, the COI of CMT has been assessed and will serve as important input to decision-making in health policy, especially regarding research and development of therapies. Moreover, our results indicate the importance of the patient-reported perception of disease severity related to the consumption of resources.

scholarly journals The Power Of Annual Cost-Of-Illness In Predicting COPD Survival At 3 Years

2020 ◽  
Vol 6 (2) ◽  
pp. 1-5
Author(s):  
Negro RWD ◽  
Keyword(s):  
Lung Function ◽  
Cost Of Illness ◽  
Annual Cost ◽  
Predictive Power ◽  
Clinical Signs ◽  
Total Annual Cost ◽  
High Predictive Power ◽  
Data Support

Clinical signs and lung function are variably sensitive in predicting survival in COPD. 1) Specific and appropriate lung function indices contribute to predicting mortality in COPD effectively. 2) Total annual cost confirms the most sensitive predictor of mortality at three years. 3) Present data support the high predictive power of the careful functional and economic phenotyping in COPD.

Estimation of the cost of MS in Europe: Extrapolations from a multinational cost study

2007 ◽  
Vol 13 (8) ◽  
pp. 1054-1064 ◽  
Author(s):  
P. Sobocki ◽  
M. Pugliatti ◽  
K. Lauer ◽  
G. Kobelt
Keyword(s):  
Annual Cost ◽  
Indirect Costs ◽  
Epidemiological Data ◽  
Cost Data ◽  
Primary Data ◽  
Total Annual Cost ◽  
Cost Study ◽  
Total Cost ◽  
Prevalence Estimates ◽  
The Cost

The present study aims at estimating the total cost of MS in Europe based on actual cost data from nine countries and published epidemiological evidence. The epidemiological data are reported as 12 months prevalence estimates and cost data calculated as annual cost per patient at given levels of disease severity. Cost data are extrapolated to the rest of Europe based on a model, using economic indexes adjusting for price level differences in different sectors between countries. The aggregated annual cost estimates are presented in Euro for 2005. In 28 European countries with a population of 466 million, an estimated 380 000 individuals are affected by MS. The total annual cost of MS in Europe is estimated at 12.5 billion in year 2005, corresponding to a cost of 27 per European inhabitant. Direct costs represent slightly more than half of the total cost (6.0 billion). Informal care is estimated at 3.2 billion, and indirect costs due to morbidity at 3.2 billion. Thus, the largest component of costs is found outside the formal health care sector. Although our model appears to predict costs reasonably well, when comparing to previous national studies not included in the estimates, there are considerable uncertainties when extrapolating cost data across countries even within Europe. These weaknesses can only be overcome by collecting primary data. Multiple Sclerosis 2007; 13: 1054—1064. http://msj.sagepub.com

scholarly journals P080 Burden of Disease and Cost of Illness of Inflammatory Bowel Diseases in Portugal

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S181-S182
Author(s):  
F Magro ◽  
F Portela ◽  
P Lago ◽  
C Chagas ◽  
F Moreira ◽  
...  
Keyword(s):  
Cost Of Illness ◽  
Burden Of Disease ◽  
Annual Cost ◽  
Expert Panel ◽  
Indirect Costs ◽  
Direct Costs ◽  
Ageing Population ◽  
Patient Reported ◽  
Reported Study ◽  
Inflammatory Bowel

Abstract Background Estimate the burden of the disease (BoD) of IBD in Portugal and quantify society’s cost of illness (CoI) associated, including direct and indirect costs. Raise awareness to IBD in Portugal and thus bringing empowerment to the patient community. Methods Burden of disease was assessed considering the impact in terms of DALY, estimated considering a prevalence-based model. Costs were estimated considering the societal perspective, using a prevalence-based model. Direct costs comprise hospitalizations, surgeries, medical appointments, emergency visits, pharmacological treatment, exams and transportation. Indirect costs were calculated from patient and caretaker absence, presenteeism, early retirement and premature death. An expert panel composed by 5 Portuguese gastroenterologists and a patient reported study were conducted to support the cost analysis and fill in information gaps. The expert panel followed a two-round modified Delphi methodology. The patient reported study was conducted with 370 Portuguese IBD patients by the Portuguese Association of Inflammatory Bowel Disease (APDI). Results Considering a prevalence of 24,070 patients, 6,067 DALYs were estimated to be lost in Portugal due to IBD. This result reflects a total of 507 YLLs (8%) and a total of 5,560 YLDs (92%) The total annual cost associated with IBD patients in Portugal was estimated to be €146,293,082, with an average annual cost of €6,075 per patient. This value is divided into €86,834,011 direct costs (59%) and €59,459,070 (41%) indirect costs. Indirect costs account for 41% of IBD’s total cost. Interestingly, costs of patient work absences showed very similar values to those associated with presenteeism. This demonstrates that IBD does not manifest its impact only in isolated timepoints, but rather that it is present in the everyday lives of patients. Conclusion It is essential to discuss the relationship between the burden of disease and its cost, especially when discussing a clinical condition with an increasing incidence rate in an ageing population as it is in Portugal. Due to the need to generate further data and evidence regarding IBD, this study provides the first comprehensive insight at a national level considering all the dimensions of disease burden. The results presented will raise social-economic awareness of IBD, allow for the definition of disease management strategies and support prioritization on resource allocation, especially considering the availability of new treatment approaches. Moreover, this study will set the basis for the thorough assessment of the real burden of IBD in the Portuguese healthcare system and society overall.

Patient-reported quality of life in multiple sclerosis differs between cultures and countries: a cross-sectional Austrian–German–Polish study

2010 ◽  
Vol 17 (4) ◽  
pp. 478-486 ◽  
Author(s):  
A Pluta-Fuerst ◽  
K Petrovic ◽  
T Berger ◽  
W Fryze ◽  
S Fuchs ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Clinical Trials ◽  
Disease Severity ◽  
Multivariate Regression Analysis ◽  
Cross Sectional ◽  
Patient Reported ◽  
Edss Score ◽  
The Impact

Background: Patient-reported quality of life (QOL) is an outcome measure in clinical trials in multiple sclerosis (MS), but translated QOL instruments may affect the actual comparability of data. Objectives: We aimed to investigate possible differences in QOL in MS between cultures and countries. We employed the Functional Assessment of Multiple Sclerosis (FAMS) Version 4 questionnaire, which is a state-of-the-art QOL instrument. Methods: Some 484 MS patients from Austria (145), Germany (144), and Poland (195) aged 20–60 years, and stratified for sex and disease severity as measured by the Expanded Disability Status Scale (EDSS) score completed the respective FAMS translation and a socio-demographic questionnaire. Results: Analysis of variance and post-hoc Scheffé-test showed that 64% of the FAMS items were answered significantly differently ( p < 0.001) between the three countries. A multivariate regression analysis including all the available disease-related and socio-demographic variables revealed the factors age, EDSS score, employment, social contacts, MS course, and country to be significant predictors of both the total FAMS score and the score for items answered differently between the three countries. Conclusions: Differences exist in the QOL of MS patients from Austria, Germany, and Poland which seem to lie beyond the impact of disease severity. They appear to be related to culture or other country-specific factors, as country was an independent predictor of differently answered items of the FAMS and thus also of the whole FAMS. QOL instruments should consider this aspect to faithfully reflect subjective information such as patient-reported benefit of treatment in multinational clinical trials.

scholarly journals Intersectoral costs of sexually transmitted infections (STIs) and HIV: a systematic review of cost-of-illness (COI) studies

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Lena Schnitzler ◽  
Louise J. Jackson ◽  
Aggie T. G. Paulus ◽  
Tracy E. Roberts ◽  
Silvia M. A. A. Evers
Keyword(s):  
Systematic Review ◽  
Sexually Transmitted Infections ◽  
Informal Care ◽  
Cost Of Illness ◽  
Data Extraction ◽  
Cost Burden ◽  
Total Cost ◽  
Sexually Transmitted ◽  
Stis And Hiv ◽  
The Impact

Abstract Background Sexually transmitted infections (STIs) and HIV can generate costs both within and outside the health sector (i.e. intersectoral costs). This systematic review aims (i) to explore the intersectoral costs associated with STIs and HIV considered in cost-of-illness (COI) studies, (ii) to categorise and analyse these costs according to cost sectors, and (iii) to illustrate the impact of intersectoral costs on the total cost burden. Methods Medline (PubMed), EMBASE (Ovid), Web of Science, CINAHL, PsycINFO, EconLit and NHS EED were searched between 2009 and 2019. Key search terms included terms for cost-of-illness, cost analysis and all terms for STIs including specific infections. Studies were included that assessed intersectoral costs. A standardised data extraction form was adopted. A cost component table was established based on pre-defined sector-specific classification schemes. Cost results for intersectoral costs were recorded. The quality of studies was assessed using a modified version of the CHEC-list. Results 75 COI studies were considered for title/abstract screening. Only six studies were available in full-text and eligible for data extraction and narrative synthesis. Intersectoral costs were captured in the following sectors: Patient & family, Informal care and Productivity (Paid Labour). Patient & family costs were addressed in four studies, including patient out-of-pocket payments/co-payments and travel costs. Informal care costs including unpaid (home) care support by family/friends and other caregiver costs were considered in three studies. All six studies estimated productivity costs for paid labour including costs in terms of absenteeism, disability, cease-to-work, presenteeism and premature death. Intersectoral costs largely contributed to the total economic cost burden of STIs and HIV. The quality assessment revealed methodological differences. Conclusions It is evident that intersectoral costs associated with STIs and HIV are substantial. If relevant intersectoral costs are not included in cost analyses the total cost burden of STIs and HIV to society is severely underestimated. Therefore, intersectoral costs need to be addressed in order to ensure the total economic burden of STIs and HIV on society is assessed, and communicated to policy/decision-makers.

High cost of illness in fibromyalgia patients in Iran, irrespective of disease severity: A prospective cost study

2021 ◽  
Author(s):  
Faeze Gharibpoor ◽  
Elaheh Nasrollahzadeh ◽  
Banafshesh Gavidel‐Parsa ◽  
Mohammad Ebrahim Ghaffari ◽  
Ali Bidari
Keyword(s):  
Disease Severity ◽  
Cost Of Illness ◽  
Cost Study

Resource use and costs associated with different states of breast cancer

2007 ◽  
Vol 23 (2) ◽  
pp. 223-231 ◽  
Author(s):  
Mathias Lidgren ◽  
Nils Wilking ◽  
Bengt Jönsson ◽  
Clas Rehnberg
Keyword(s):  
Breast Cancer ◽  
Indirect Cost ◽  
Informal Care ◽  
Resource Use ◽  
Primary Breast Cancer ◽  
Primary Diagnosis ◽  
Patient Questionnaire ◽  
First Year ◽  
Medical Resource ◽  
Total Cost

Objectives: This study investigated the direct medical resource use and cost, informal care cost, and indirect cost associated with breast cancer in different states of the disease in normal clinical practice.Methods: A retrospective database analysis was used to estimate direct medical resource use and cost, and a patient questionnaire was used to evaluate informal care and work capacity in different states of breast cancer.Results: For patients younger than 65 years of age, the first year after a primary diagnosis total cost amounted to 280,000 SEK ($39,000) and the first year after a local or contralateral recurrence total cost was 351,000 SEK ($48,900). The second and following years after primary breast cancer or recurrence had substantially lower total cost, amounting to 94,000 SEK ($13,000). For patients with metastatic disease, the annual total cost was estimated to 334,000 SEK ($46,500). For patients older than 65 years of age, the total cost for the first year after a primary diagnosis amounted to 80,000 SEK ($11,200) and the total cost for the first year after a local or contralateral recurrence was 92,000 SEK ($12,900). The total cost for the second and following years after primary breast cancer or recurrence was estimated to 18,000 SEK ($2,600), and the total annual cost for patients with metastatic was 122,000 SEK ($17,000).Conclusions: Both direct medical costs and indirect cost vary substantially between disease states. For patients under 65 year of age, indirect costs accounted for more than 50 percent of the total cost.

A comprehensive assessment of the cost of multiple sclerosis in the United States

1998 ◽  
Vol 4 (5) ◽  
pp. 419-425 ◽  
Author(s):  
Kathryn Whetten-Goldstein ◽  
Frank A Sloan ◽  
Larry B Goldstein ◽  
Elizabeth D Kulas
Keyword(s):  
Multiple Sclerosis ◽  
Health Care ◽  
Health Insurance ◽  
Informal Care ◽  
Annual Cost ◽  
Lifetime Cost ◽  
The United States ◽  
Personal Health ◽  
Secondary Sources ◽  
The Cost

Comprehensive data on the costs of multiple sclerosis is sparse. We conducted a survey of 606 persons with MS who were members of the National Multiple Sclerosis Society to obtain data on their cost of personal health services, other services, equipment, and earnings. Compensation of such cost in the form of health insurance, income support, and other subsidies was measured. Survey data and data from several secondary sources was used to measure costs incurred by comparable persons without MS. Based on the 1994 data, the annual cost of MS was estimated at over $34 000 per person, translating into a conservative estimate of national annual cost of $6.8 billion, and a total lifetime cost per case of $2.2 million. Major components of cost were earnings loss and informal care. Virtually all persons with MS had health insurance, mostly Medicare/Medicaid. Health insurance covered 51 per cent of costs for services, excluding informal care. On average, compensation for earnings loss was 27 per cent. MS is very costly to the individual, health care system, and society. Much of the cost (57 per cent) is in the form of burdens other than personal health care, including earnings loss, equipment and alternations, and formal and informal care. These costs often are not calculated.

Trends in Hidradenitis Suppurativa Disease Severity and Quality of Life Outcome Measures: A Systematic Review (Preprint)

2021 ◽  
Author(s):  
Jalal Maghfour ◽  
Torunn Elise Sivesind ◽  
Cory A. Dunnick ◽  
Robert Paul Dellavalle
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Disease Severity ◽  
Outcome Measures ◽  
Hidradenitis Suppurativa ◽  
Life Quality ◽  
Clinical Score ◽  
Validity And Reliability ◽  
Patient Reported

BACKGROUND While there has been an increase in the number of randomized, controlled trials (RCTs) evaluating treatment efficacy for HS, instrument measurements of disease severity and quality of life (QoL) are varied, making compilation of data and comparison between studies a challenge for clinicians. OBJECTIVE The aim of this review is to evaluate trends in disease severity scales and patient reported outcome measures used in RCTs assessing treatment interventions among HS patients. METHODS A primary systematic literature review was conducted in August 2020. PubMed/MEDLINE, Embase, Web of Science, and Cochrane databases were used to identify all articles published from January 1964 to July 2020. The study was prospectively registered with PROSPERO (ID: 209582). Twenty-five articles were included in the systematic review. RESULTS Sartorius and modified Sartorius scores (n=8), and Hidradenitis Suppurativa Clinical score (HiSCs) (n=8) were the most commonly used instruments for disease severity. Participants’ pain, followed by Dermatology Life Quality Index (DLQI), were the most common QoL measures used in the reviewed studies. CONCLUSIONS Heterogeneity of data characterizing both the validity and reliability of existing outcome measures hinders interpretation and translation of the results from RCTs into clinical practice. Many of the QoL measures identified were not specific to HS and may not be representative of all factors impacting patients.

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