Modeling delay to diagnosis for Amyotrophic lateral sclerosis: Under reporting and incidence estimates

BMC Neurology

Volumn 12, Issue , 2012, Pages

  Rocchetti, Irene ^a   Taruscio, Domenica ^b   Pierannunzio, Daniela ^b  

^a Dipartimento per i censimenti e gli archivi amministrativi e statistici   (Italy)

^b ISTITUTO SUPERIORE DI SANITÀ   (Italy)

Author keywords

Delay to diagnosis; Horvitz Thompson; Incidence estimate; Rare diseases; Reverse hazard

Indexed keywords

ACCURACY; AMYOTROPHIC LATERAL SCLEROSIS; ARTICLE; COHORT ANALYSIS; DATA ANALYSIS; DELAYED DIAGNOSIS; ELDERLY CARE; GENERAL PRACTITIONER; HUMAN; INCIDENCE; MORBIDITY; MORTALITY; MULTIPLE SCLEROSIS; PREVALENCE; PROBABILITY; STATISTICAL DISTRIBUTION; SYMPTOM;

AMYOTROPHIC LATERAL SCLEROSIS; DELAYED DIAGNOSIS; HUMANS; INCIDENCE; ITALY; MODELS, THEORETICAL; PREVALENCE; REGISTRIES;

EID: 84874007445     PISSN: None     EISSN: 14712377     Source Type: Journal    
DOI: 10.1186/1471-2377-12-160     Document Type: Article

References (28)

1. Decreto 18 maggio 2001, n. 279. Regolamento di istituzione della rete nazionale delle malattie rare e di esenzione dalla partecipazione al costo delle relative prestazioni sanitarie, ai sensi dell'articolo 5, comma 1, lettera b), del decreto legislativo 29 aprile 1998, n.124. (GU n. 160 del 12-7-2001- Suppl. ordinario n. 180/L).
2. Bartolucci F, Forcina A. Analysis of capture-recapture data with a Rasch-type model allowing for conditional dependence and multidimensionality. Biometrics 2001, 57:714-719. 10.1111/j.0006-341X.2001.00714.x, 11550919.
3. Chao A. Estimating the population size for capture-recapture data with unequal catchability. Biometrics 1987, 43:783-791. 10.2307/2531532, 3427163.
4. Torny F, Lacoste M, Nguyen JM, Tymoczko-Nguyen ME, Couratier P. Analysis of reasons for the late diagnosis of amyotrophic lateral sclerosis. Rev Neurol (Paris) 2006, 162(5):617-22. French.
5. Househam E, Swash M. Diagnostic delay in amyotrophic lateral sclerosis: what scope for improvement?. Neurol Sci 2000, 180(1-2):76-81.
6. Cellura E, Spataro R, Taiello AC, La Bella V. Factors affecting the diagnostic delay in amyotrophic lateral sclerosis. Clin Neurology and Neurosurgery 2012, 114:550-554.
7. Kraemer M, Buerger M, Berlit P. Diagnostic problems and delay of diagnosis in amyotrophic lateral sclerosis. Clin Neurol Neurosurg 2010, 112:103-105. 10.1016/j.clineuro.2009.10.014, 19931253.
8. Jisheng SC, Yip PSF, Chau PH. Estimation of reporting delay and suicide incidence in Hong Kong. Stat Med 2004, 23:467-476. 10.1002/sim.1604, 14748039.
9. Esbjerg S, Keiding N, Koch-Henriksen N. Reporting delay and corrected incidence of multiple sclerosis. Stat Med 1999, 18:1691-1706. 10.1002/(SICI)1097-0258(19990715)18:13<1691::AID-SIM160>3.0.CO;2-D, 10407238.
10. Kalbfleisch JD, Prentice RL. The Statistical Analysis of Failure Time Data 2002, Hoboken New Jersey: Wiley-Interscience.
11. Antolini L, Biganzoli EM, Boracchi P. Crude Cumulative Incidence in the form of a Horvitz-Thompson like and Kaplan-Meier Estimator. COBRA Preprint Series 2006, 10:1-12.
12. De Angelis R, Capocaccia R. Estimating the completeness of prevalence based on cancer registry data. Statistics in Medicine 1997, 16:425-440. 10.1002/(SICI)1097-0258(19970228)16:4<425::AID-SIM414>3.0.CO;2-Z, 9044530.
13. De Angelis R, Capocaccia R, Hakulinen T, Soderman B, Verdecchia A. Mixture models for cancer survival analysis: application to population-based data with covariates. Stat Med 1999, 18:441-454. 10.1002/(SICI)1097-0258(19990228)18:4<441::AID-SIM23>3.0.CO;2-M, 10070685.
14. Nordt C, Landolt K, Stohler R. Estimating incidence trends in regular heroin use in 26 regions of Switzerland using methadone treatmnet data. Substance Abuse Treat Prev, and Policy 2009, 12:4-14.
15. Lagakos SW, Barraj LM, De Gruttola V. Nonparametric Analysis of Truncated Survival Data, with Application to AIDS. Biometrika 1988 75:515-523.
16. Kalbfleisch JD, Lawless JF. Inference Based on Retrospective Ascertainment: An Analysis of the Data on transfusion-Related AIDS. J Am Stat Assoc 1989, 84:360-372.
17. Satten GA, Datta S. The Kaplan-Meier Estimator as an Inverse-Probability-of-Censoring Weighted Average. Am Statistician 2001, 55:207-209.
18. Kalbfleisch JD, Lawless JF. Estimating the incubation time distribution and expected number of cases of transfusion-associated Acquired Immune Deficiency Syndrome. Transfusion 1989, 29:672-676. 10.1046/j.1537-2995.1989.29890020437.x, 2799890.
19. Rocchetti I, Taruscio D, Marco A. Modeling delay in diagnosis of NF: under reportincg, incidence and prevalence estimates. J Appl Stat 2012, 39:711-721.
20. Logroscino G, Traynor BJ, Hardiman O, Chió A, Mitchell D, Swingler RJ, Millul A, Benn E, Beghi E. Incidence of amyotrophic lateral sclerosis in Europe. J Neurol Neurosurg Psychiatry 2010, 81:385-390. 10.1136/jnnp.2009.183525, 2850819, 19710046.
21. Marin B, Couratier P, Preux P-M, Logroscino G. Can Mortality Data Be Used to Estimate Amyothophic Lateral Sclerosis Incidence?. Neuro-epidemiology 2011, 36:29-38.
22. Statistiche demografiche ISTAT. [http://demo.istat.it/].
23. Piemonte and Valle d'Aosta Register for Amiotrophic Lateral Sclerosis (PARALS) Incidence of ALS in Italy, evidence for a uniform frequencyin Western countries. Neurology 2001, 56:239-244. Piemonte and Valle d'Aosta Register for Amiotrophic Lateral Sclerosis (PARALS).
24. Logroscino G, Beghi E, Zoccolella S, Palagano R, Fraddosio A, Simone IL, Lamberti P, Lepore V. Serlenga L and the SLAP registry: Incidence of amiotrophic lateral sclerosis in southern Italy: a population based study. J Neurol Neurosurg Psychiatry 2005, 76:1094-1098. 10.1136/jnnp.2004.039180, 1739746, 16024886.
25. Beghi E, Millul A, Micheli A, Vitelli E, Logroscino G. Incidence of SLA in Lombardy, Italy. Neurology 2007, 68:141-145. 10.1212/01.wnl.0000250339.14392.bb, 17210896.
26. Kalbfleisch JD, Lawless JF. Regression models for right truncated data with applications to AIDS incubation times and reporting lags. Statistica Sinica 1991, 1:19-32.
27. Clayton D, Hills M. Stat Models in Epidemiol 1993, New York: Oxford University Press.
28. Oehlert GW. A note on the Delta Method. The Am Statistician 1992, 46:27-29.