References
- Ratjen F, Doring G. Cystic fibrosis. Lancet. 2003;361(9358):681–689. doi:https://doi.org/10.1016/S0140-6736(03)12567-6.
- Hamosh A, FitzSimmons SC, Macek M, Jr., Knowles MR, Rosenstein BJ, Cutting GR. Comparison of the clinical manifestations of cystic fibrosis in black and white patients. J Pediatr. 1998;132(2):255–259. doi:https://doi.org/10.1016/S0022-3476(98)70441-X.
- Guggino WB. Cystic fibrosis and the salt controversy. Cell. 1999;96(5):607–610. doi:https://doi.org/10.1016/S0092-8674(00)80570-X.
- Ooi CY, Tullis E, Durie P. Diagnostic approach to CFTR-related disorders In: Allen J, Rubenstein R, Panitch H, eds. Cystic Fibrosis. Lung Biology in Health and Disease Series. New York: Informa Healthcare; 2010:103–122.
- MacKenzie T, Gifford AH, Sabadosa KA, et al. Longevity of patients with cystic fibrosis in 2000 to 2010 and beyond: survival analysis of the Cystic Fibrosis Foundation patient registry. Ann Intern Med. 2014;161(4):233–241. doi:https://doi.org/10.7326/M13-0636.
- Foundation CCF. The Canadian cystic fibrosis registry: 2014 annual data report. 2014.
- Foundation USCF. The Cystic Fibrosis Foundation Patient Registry: 2014 annual data report. 2014.
- Australia CF. Cystic Fibrosis Australia 2014: The 17th Annual Report Australian Cystic Fibrosis Data Registry. 2014.
- Society ECF. The European Cystic Fibrosis Society Patient Registry Annual Data Report: 2014 Data. 2014.
- Canadian Agency for Drugs and Technologies in Health (CADTH). Common Drug Review Pharmacoeconomic Report: Ivacaftor. https://www.cadth.ca/sites/default/files/cdr/pharmacoeconomic/SR0430_KalydecoR117H_PE_Report.pdf. : CADTH; 2016.
- Wainwright CE, Elborn JS, Ramsey BW, et al. Lumacaftor-Ivacaftor in Patients with Cystic Fibrosis Homozygous for Phe508del CFTR. N Engl J Med. 2015;373(3):220–231. doi:https://doi.org/10.1056/NEJMoa1409547.
- Ramsey BW, Davies J, McElvaney NG, et al. A CFTR potentiator in patients with cystic fibrosis and the G551D mutation. N Engl J Med. 2011;365(18):1663–1672. doi:https://doi.org/10.1056/NEJMoa1105185.
- Davies JC, Wainwright CE, Canny GJ, Chilvers MA, et al. Efficacy and safety of ivacaftor in patients aged 6 to 11 years with cystic fibrosis with a G551D mutation. Am J Respir Crit Care Med. 2013;187(11):1219–1225. doi:https://doi.org/10.1164/rccm.201301-0153OC.
- Guerriere DN, Tullis E, Ungar WJ, et al. Economic burden of ambulatory and home-based care for adults with cystic fibrosis. Treat Respir Med. 2006;5(5):351–359. doi:https://doi.org/10.2165/00151829-200605050-00006.
- Johnson JA, Connolly MA, Jacobs P, Montgomery M, Brown NE, Zuberbuhler P. Cost of care for individuals with cystic fibrosis: a regression approach to determining the impact of recombinant human DNase. Pharmacotherapy. 1999;19(10):1159–1166. doi:https://doi.org/10.1592/phco.19.15.1159.30580.
- Rosenfeld M, Davis R, FitzSimmons S, Pepe M, Ramsey B. Gender gap in cystic fibrosis mortality. Am J Epidemiol. 1997;145(9):794–803. doi:https://doi.org/10.1093/oxfordjournals.aje.a009172.
- Glussich A. Estimating Costs of Hospital Stays [Presentation]. https://www.ihe.ca/publications/estimating-costs-of-hospital-stays2015.
- Canadian Institute for Health Information. Understanding Variability in the Cost of a Standard Hospital Stay. Ottawa, ON: CIHI; 2017.
- Gu Y, Garcia-Perez S, Massie J, van Gool K. Cost of care for cystic fibrosis: an investigation of cost determinants using national registry data. Eur J Health Econ. 2015;16(7):709–717. doi:https://doi.org/10.1007/s10198-014-0621-5.
- Safi C, Zheng Z, Dimango E, Keating C, Gudis DA. Chronic Rhinosinusitis in Cystic Fibrosis: Diagnosis and Medical Management. Med Sci (Basel). 2019;7(2):32–40.
- Colombo C. Liver disease in cystic fibrosis. Curr Opin Pulm Med. 2007;13(6):529–536. doi:https://doi.org/10.1097/MCP.0b013e3282f10a16.
- Moran A, Becker D, Casella SJ, CFRD Consensus Conference Committee, et al. Epidemiology, pathophysiology, and prognostic implications of cystic fibrosis-related diabetes: a technical review. Diabetes Care. 2010;33(12):2677–2683. doi:https://doi.org/10.2337/dc10-1279.
- Burker EJ, Sedway J, Carone S. Psychological and educational factors: better predictors of work status than FEV1 in adults with cystic fibrosis. Pediatr Pulmonol. 2004;38(5):413–418. doi:https://doi.org/10.1002/ppul.20090.
- Your Health System: Cost of a Standard Hospital Stay https://yourhealthsystem.cihi.ca/hsp/inbrief?lang=en#!/indicators/015/cost-of-a-standard-hospital-stay/;mapC1;mapLevel2;/.]. CIHI; 2017.
- Canada Bo. Bank of Canada Inflation Calculator bankofcanada.ca.
- Briesacher BA, Quittner AL, Fouayzi H, Zhang J, Swensen A. Nationwide trends in the medical care costs of privately insured patients with cystic fibrosis (CF), 2001-2007. Pediatr Pulmonol. 2011;46(8):770–776. doi:https://doi.org/10.1002/ppul.21441.
- Hassan M, Bonafede MM, Limone BL, Hodgkins P, Sawicki GS. The burden of cystic fibrosis in the Medicaid population. Clinicoecon Outcomes Res. 2018;10:423–431. doi:https://doi.org/10.2147/CEOR.S162021.
- Horvais V, Touzet S, François S, et al. Cost of home and hospital care for patients with cystic fibrosis followed up in two reference medical centers in France. Int J Technol Assess Health Care. 2006;22(4):525–531. doi:https://doi.org/10.1017/S0266462306051476.
- Dewitt EM, Grussemeyer CA, Friedman JY, et al. Resource use, costs, and utility estimates for patients with cystic fibrosis with mild impairment in lung function: analysis of data collected alongside a 48-week multicenter clinical trial. Value Health. 2012;15(2):277–283. doi:https://doi.org/10.1016/j.jval.2011.11.027.
- Jackson AD, Jackson AL, Fletcher G, et al. Estimating Direct Cost of Cystic Fibrosis Care Using Irish Registry Healthcare Resource Utilisation Data, 2008-2012. Pharmacoeconomics. 2017;35(10):1087–1101. doi:https://doi.org/10.1007/s40273-017-0530-4.
- Huot L, Durieu I, Bourdy S, REMU study, et al. Evolution of costs of care for cystic fibrosis patients after clinical guidelines implementation in a French network. J Cyst Fibros. 2008;7(5):403–408. doi:https://doi.org/10.1016/j.jcf.2008.02.004.
- Improvement CFfHCOPD in Western Canada: Health, Care, and Costs. www.cfhi_fcass.ca/innovation; 2015.
- Angelis A, Kanavos P, López-Bastida J, Linertová R, Nicod E, Serrano-Aguilar P, BURQOL-RD Research Network Social and economic costs and health-related quality of life in non-institutionalised patients with cystic fibrosis in the United Kingdom. BMC Health Serv Res. 2015;15:428 doi:https://doi.org/10.1186/s12913-015-1061-3.
- Chevreul K, Michel M, Brigham KB, BURQOL-RD Research Network, et al. Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe. Eur J Health Econ. 2016;17(S1):7–18. doi:https://doi.org/10.1007/s10198-016-0781-6.
- Chevreul K, Berg Brigham K, Michel M, Rault G, BURQOL-RD Research Network. Costs and health-related quality of life of patients with cystic fibrosis and their carers in France. J Cyst Fibros. 2015;14(3):384–391. doi:https://doi.org/10.1016/j.jcf.2014.11.006.
- Colombo C, Dacco V, Alicandro G, et al. Cost of cystic fibrosis: analysis of treatment costs in a specialized center in northern Italy. Adv Therapy. 2013;30(2):165–175. doi:https://doi.org/10.1007/s12325-013-0008-5.
- Iskrov GG, Stefanov RS, López-Bastida J, Linertová R, Oliva-Moreno J, Serrano-Aguilar P. Economic Burden And Health-Related Quality Of Life Of Patients With Cystic Fibrosis In Bulgaria. Folia Med (Plovdiv). 2015;57(1):56–64. doi:https://doi.org/10.1515/folmed-2015-0020.
- Kopciuch D, Zaprutko T, Paczkowska A, Nowakowska E. Costs of treatment of adult patients with cystic fibrosis in Poland and internationally. Public Health. 2017;148:49–55. doi:https://doi.org/10.1016/j.puhe.2017.03.003.
- O'Sullivan AK, Sullivan J, Higuchi K, Montgomery AB. Health care utilization & costs for cystic fibrosis patients with pulmonary infections. Manag Care. 2011;20(2):37–44.
- Vadagam P, Kamal KM. Hospitalization costs of cystic fibrosis in the United States: a retrospective analysis. Hosp Pract (1995)). 2018;46(4):203–213. doi:https://doi.org/10.1080/21548331.2018.1505407.
- Levy JF, Rosenberg MA, Farrell PM. Innovative assessment of inpatient and pulmonary drug costs for children with cystic fibrosis. Pediatr Pulmonol. 2016;51(12):1295–1303. doi:https://doi.org/10.1002/ppul.23554.
- Grosse SD, Do TQN, Vu M, Feng LB, Berry JG, Sawicki GS. Healthcare expenditures for privately insured US patients with cystic fibrosis, 2010-2016. Pediatr Pulmonol. 2018;53(12):1611–1618. doi:https://doi.org/10.1002/ppul.24178.
- Mlčoch T, Klimeš J, Fila L, et al. Cost-of-illness analysis and regression modeling in cystic fibrosis: a retrospective prevalence-based study. Eur J Health Econ. 2017;18(1):73–82. doi:https://doi.org/10.1007/s10198-015-0759-9.
- Sansgiry SS, Joish VN, Boklage S, Goyal RK, Chopra P, Sethi S. Economic burden of Pseudomonas aeruginosa infection in patients with cystic fibrosis. J Med Econ. 2012;15(2):219–224. doi:https://doi.org/10.3111/13696998.2011.638954.
- Okumura MJ, Campbell AD, Nasr SZ, Davis MM. Inpatient health care use among adult survivors of chronic childhood illnesses in the United States. Arch Pediatr Adolesc Med. 2006;160(10):1054–1060. doi:https://doi.org/10.1001/archpedi.160.10.1054.
- Lieu TA, Ray GT, Farmer G, Shay GF. The cost of medical care for patients with cystic fibrosis in a health maintenance organization. Pediatrics. 1999;103(6):e72 doi:https://doi.org/10.1542/peds.103.6.e72.
- Baumann U, Stocklossa C, Greiner W, von der Schulenburg JM, von der Hardt H. Cost of care and clinical condition in paediatric cystic fibrosis patients. J Cyst Fibros. 2003;2(2):84–90. doi:https://doi.org/10.1016/S1569-1993(03)00024-9.
- Wolfe PR, Moran DW. Global budgeting in the OECD countries. Health Care Financ Rev. 1993;14(3):55–76.
- Skolnik K, Quon BS. Recent advances in the understanding and management of cystic fibrosis pulmonary exacerbations. F1000Res. 2018;7:575. doi:https://doi.org/10.12688/f1000research.13926.1.
- Houwen RH, van der Doef HP, Sermet I, ESPGHAN Cystic Fibrosis Working Group, et al. Defining DIOS and constipation in cystic fibrosis with a multicentre study on the incidence, characteristics, and treatment of DIOS. J Pediatr Gastroenterol Nutr. 2010;50(1):38–42. doi:https://doi.org/10.1097/MPG.0b013e3181a6e01d.
- Subhi R, Ooi R, Finlayson F, et al. Distal intestinal obstruction syndrome in cystic fibrosis: presentation, outcome and management in a tertiary hospital (2007-2012. ).ANZ J Surg. 2014;84(10):740–744. doi:https://doi.org/10.1111/ans.12397.
- Colombo C, Ellemunter H, Houwen R, Munck A, Taylor C, Wilschanski M, ECFS Guidelines for the diagnosis and management of distal intestinal obstruction syndrome in cystic fibrosis patients. J Cyst Fibros. 2011;10 Suppl 2(Suppl 2):S24–S8. doi:https://doi.org/10.1016/S1569-1993(11)60005-2.
- Lavie M, Manovitz T, Vilozni D, et al. Long-term follow-up of distal intestinal obstruction syndrome in cystic fibrosis. WJG. 2015;21(1):318–325. doi:https://doi.org/10.3748/wjg.v21.i1.318.