Standards of care for patients with cystic fibrosis: a European consensus
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Welsh, 1995, Cystic fibrosis, 3799
Riordan, 1989, Identification of the cystic fibrosis gene: cloning and characterization of complementary DNA, Science, 245, 1066, 10.1126/science.2475911
Walters, 1990, Doctor–patient relationship in cystic fibrosis—a patient's perspective, Holist. Med., 6, 157, 10.3109/13561829009043461
Mahadeva, 1998, Clinical outcome in relation to care in centres specializing in cystic fibrosis: cross sectional study, BMJ, 316, 1771, 10.1136/bmj.316.7147.1771
Johnson, 2003, Factors influencing outcomes in cystic fibrosis. A center based analysis, Chest, 123, 20, 10.1378/chest.123.1.20
2001
Schidlow, 1993, Cystic Fibrosis Foundation consensus conference report on pulmonary complications of cystic fibrosis, Pediatr. Pulmonol., 15, 187, 10.1002/ppul.1950150311
Doring, 2000, Antibiotic therapy against Pseudomonas aeruginosa in cystic fibrosis: a European consensus, Eur. Respir. J., 16, 749, 10.1034/j.1399-3003.2000.16d30.x
Consensus conference, 2003, Management of patients with cystic fibrosis. Observation, nutrition, gastroenterology and metabolism, Arch. Pediatr., 10, 382s
2001
International Physiotherapy Group for Cystic Fibrosis (IPG/CF). Physiotherapy in the treatment of cystic fibrosis. 3rd version, 2002.www.cfww.org.
Lannefors, 2004, Physiotherapy in infants and young children with cystic fibrosis: current practice and further developments, J. R. Soc. Med., 97, 8
Beker, 2001, Stature as a prognostic factor in cystic fibrosis survival, J. Am. Diet. Assoc., 101, 438, 10.1016/S0002-8223(01)00113-4
Collins, 1999, Normal growth in cystic fibrosis associated with a specialized centre, Arch. Dis. Child., 81, 241, 10.1136/adc.81.3.241
Johannesson, 1997, Delayed puberty in girls with cystic fibrosis despite good clinical status, Pediatrics, 99, 29, 10.1542/peds.99.1.29
Sinaasappel, 2002, Nutrition in patients with cystic fibrosis: a European Consensus, J. Cyst. Fibros., 1, 51, 10.1016/S1569-1993(02)00032-2
Poustie, 2000, Reliability of percentage ideal weight for height, Arch. Dis. Child., 83, 183, 10.1136/adc.83.2.183
Littlewood, 2000, Control of malabsorption in cystic fibrosis, vol. 2, 205
Walters, 1990, Clinical monitoring of steatorrhoea in cystic fibrosis, Arch. Dis. Child., 63, 99, 10.1136/adc.65.1.99
Kristidis, 1992, Genetic determination of exocrine pancreatic function in cystic fibrosis, Am. J. Hum. Genet., 50, 1178
Blair, 1994, Psychosocial functioning of young adults with cystic fibrosis and their families, Thorax, 49, 798, 10.1136/thx.49.8.798
Duff, 2003, Incorporating psychological approaches into routine paediatric venepuncture, Arch. Dis. Child., 88, 931, 10.1136/adc.88.10.931
Stark, 2000, Parent and child mealtime behavior in families of children with cystic fibrosis, J. Pediatr., 136, 195, 10.1016/S0022-3476(00)70101-6
Powers, 2002, Caloric intake and eating behavior in infants and toddlers with cystic fibrosis, Pediatrics, 109, E75-5, 10.1542/peds.109.5.e75
Sterner-Allison, 1999, Management of adolescent and adult inpatients with cystic fibrosis, Am. J. Health-Syst. Pharm., 56, 158, 10.1093/ajhp/56.2.158
Høiby, 2000, Microbiology of cystic fibrosis, 83
Saiman, 2003, Infection control recommendations for patients with cystic fibrosis. Microbiology, important pathogens, and infection control practices to prevent patient-to-patient transmission, Infect. Control Hosp. Epidemiol., 24, S1, 10.1086/503485
de Boeck, 2000, Improving standards of clinical care in cystic fibrosis, Eur. Respir. J., 16, 585, 10.1034/j.1399-3003.2000.16d02.x
Doring, 2004, Early intervention and prevention of lung disease in cystic fibrosis: a European consensus, J. Cyst. Fibros., 3, 67, 10.1016/j.jcf.2004.03.008
Fiel, 2003, Early aggressive intervention in cystic fibrosis: is it time to redefine our "best practice" strategies?, Chest, 123, 1, 10.1378/chest.123.1.1
Madge, 2002, A model for transition from pediatric to adult care in cystic fibrosis, J. Pediatr. Nurs., 283, 10.1053/jpdn.2002.126711
Flume, 2004, Transition programs in cystic fibrosis centers: perceptions of team members, Pediatr. Pulmonol., 37, 4, 10.1002/ppul.10391
Crozier, 1974, Cystic fibrosis: a not so fatal disease, Pediatr. Clin. North Am., 21, 935, 10.1016/S0031-3955(16)33069-3
Littlewood, 1993, Value of comprehensive assessment and investigation in the management of cystic fibrosis, 181
Ramsey, 1994, Outcome measures for clinical trials in CF: summary of a cystic fibrosis conference, J. Pediatr., 124, 177, 10.1016/S0022-3476(94)70301-9
Kerem, 1992, Prediction of mortality in patients with cystic fibrosis, N. Engl. J. Med., 326, 1187, 10.1056/NEJM199204303261804
Rosenfeld, 2001, Effect of choice of reference equation on analysis of pulmonary function in cystic fibrosis patients, Pediatr. Pulmonol., 31, 227, 10.1002/ppul.1033
Wang, 1993, Pulmonary function between 6 and 18 years of age, Pediatr. Pulmonol., 15, 75, 10.1002/ppul.1950150204
Knudson, 1983, Changes in normal maximal expiratory flow–volume curve with growth and aging, Am. Rev. Respir. Dis., 127, 725
Polgar, 1971, vol. 254, 170
Sharp, 2002, Monitoring early inflammation in CF. Infant pulmonary function testing, Clin. Rev. Allergy Immunol., 23, 59, 10.1385/CRIAI:23:1:059
Gappa, 2001, Lung function testing in infants with cystic fibrosis: lessons from the past and future directions, Pediatr. Pulmonol., 32, 228, 10.1002/ppul.1113
Marchant, 1995, Prevention of cross-infection during out-patient spirometry, Arch. Dis. Child., 72, 156, 10.1136/adc.72.2.156
Sawyer, 2004, What follows newborn screening? An evaluation of a residential education program for parents of infants with newly diagnosed cystic fibrosis, Pediatrics, 114, 411, 10.1542/peds.114.2.411
Noone, 2001, “CFTR-opathies”: disease phenotypes associated with cystic fibrosis transmembrane regulator gene mutations, Respir. Res., 2, 328, 10.1186/rr82
Gan, 1995, Genetic and clinical features of patients with cystic fibrosis diagnosed after the age of 16 years, Thorax, 50, 1301, 10.1136/thx.50.12.1301
Chillón, 1991, Mutations in the cystic fibrosis gene in patients with congenital absence of the vas deferens, N. Engl. J. Med., 332, 1475, 10.1056/NEJM199506013322204
Walkowiak, 2003, Longitudinal follow-up of exocrine pancreatic function in pancreatic sufficient cystic fibrosis patients using fecal elastase-1 test, JPGN, 36, 474
Smyth, 1995, Fibrosing colonopathy in cystic fibrosis: results of a case control study, Lancet, 346, 1247, 10.1016/S0140-6736(95)91860-4
Williams, 1995, An ultrasound scoring system for the diagnosis of liver disease in cystic fibrosis, J. Hepatol., 22, 513, 10.1016/0168-8278(95)80444-7
Williams, 2002, Ultrasound evaluation of liver disease as part of an annual assessment clinic: a 9 year review, Clin. Radiol., 57, 365, 10.1053/crad.2001.0861
Koch, 2000, Other organ systems, 314
Lanng, 1996, Diabetes mellitus in cystic fibrosis, Eur. J. Gastroenterol. Hepatol., 8, 744
Milla, 2000, Trends in pulmonary function in patients with cystic fibrosis correlate with the degree of glucose intolerance at baseline, Am. J. Respir. Crit. Care Med., 162, 891, 10.1164/ajrccm.162.3.9904075
Koch, 2001, Presence of cystic fibrosis-related diabetes mellitus is tightly linked to poor lung function in patients with cystic fibrosis: data from the European epidemiological registry of cystic fibrosis, Pediatr. Pulmonol., 32, 343, 10.1002/ppul.1142
Cystic Fibrosis Trust Management of Cystic Fibrosis Related Diabetes Mellitus Group, 2004
Elkin, 2002, Histomorphometric analysis of bone biopsies from the iliac crest of adults with cystic fibrosis, Am. J. Respir. Crit. Care Med., 166, 1470, 10.1164/rccm.200206-578OC
Van der Sluis, 2002, Reference data for bone density and body composition measured with dual energy x ray absorptiometry in white children and young adults, Arch. Dis. Child., 87, 341, 10.1136/adc.87.4.341
Fewtrell, 2003, Bone densitometry in children assessed by dual x ray absorptiometry: uses and pitfalls, Arch. Dis. Child., 88, 795, 10.1136/adc.88.9.795
Henderson, 1999, Bone mineral content and body composition in children and young adults with cystic fibrosis, Pediatr. Pulmonol., 27, 80, 10.1002/(SICI)1099-0496(199902)27:2<80::AID-PPUL3>3.0.CO;2-J
Bonjour, 2001, Gain in bone mineral mass in prepubertal girls 3.5 years after discontinuation of calcium supplementation: a follow-up study, Lancet, 358, 1208, 10.1016/S0140-6736(01)06342-5
MacKelvie, 2003, A school-based exercise intervention elicits substantial bone health benefits: a 2-year randomized controlled trial in girls, Pediatrics, 112, e447, 10.1542/peds.112.6.e447
Conway SP, Wolfe S, Brownlee KG, et al. Vitamin K status in children with cystic fibrosis and its relationship to bone mineral density and bone turnover. Pediatrics [in press].
Haworth, 2002, A prospective study of change in bone mineral density over one year in adults with cystic fibrosis, Thorax, 57, 719, 10.1136/thorax.57.8.719
Aris, 2000, Efficacy of pamidronate for osteoporosis in patients with cystic fibrosis following lung transplantation, Am. J. Respir. Crit. Care Med., 162, 941, 10.1164/ajrccm.162.3.2002051
Hulka, 2000, Head and neck manifestations of cystic fibrosis and ciliary dyskinesia, Otolaryngol. Clin. North Am., 33, 1333, 10.1016/S0030-6665(05)70284-X
Edenborough, 2001, Women with cystic fibrosis and their potential for reproduction, Thorax, 56, 649, 10.1136/thorax.56.8.649
Skirton, 2002, 33
Connor, 1997, 105
Wille, 2004, Advances in preconception genetic counseling, J. Perinat. Neonatal Nurs., 18, 28, 10.1097/00005237-200401000-00004
Conway, 1994, The chest radiograph in cystic fibrosis: a new scoring system compared with the Chrispin-Norman and Brasfield scores, Thorax, 49, 860, 10.1136/thx.49.9.860
de Jong, 2004, Progressive damage on high resolution computed tomography despite stable lung function in cystic fibrosis, Eur. Respir. J., 23, 93, 10.1183/09031936.03.00006603
Emerson, 2002, Pseudomonas aeruginosa and other predictors of mortality and morbidity in young children with cystic fibrosis, Pediatr. Pulmonol., 34, 91, 10.1002/ppul.10127
Quan, 2001, A two-year randomised, placebo-controlled trial of dornase alfa in young patients with cystic fibrosis with mild lung function abnormalities, J. Pediatr., 139, 813, 10.1067/mpd.2001.118570
Frederiksen, 1996, Improved survival in the Danish centre treated cystic fibrosis patients: results of aggressive treatment, Pediatr. Pulmonol., 21, 153, 10.1002/(SICI)1099-0496(199603)21:3<153::AID-PPUL1>3.0.CO;2-R
Robson, 1992, A cost description of an adult cystic fibrosis unit and cost analyses of different categories of patients, Thorax, 47, 684, 10.1136/thx.47.9.684