Update of respiratory tract disease in children with primary ciliary dyskinesia

Proceedings of the American Thoracic Society

Volumn 8, Issue 5, 2011, Pages 438-443

  Sagel, Scott D ^a   Davis, Stephanie D ^b   Campisi, Paolo ^c   Dell, Sharon D ^c  

^a UNIVERSITY OF COLORADO SCHOOL OF MEDICINE   (United States)

^b UNIVERSITY OF NORTH CAROLINA SCHOOL OF MEDICINE   (United States)

^c HOSPITAL FOR SICK CHILDREN   (Canada)

Author keywords

Clinical trial; Lung disease; Outcome measure; Patient reported outcome; Primary ciliary dyskinesia

Indexed keywords

AZTREONAM; CHOLINERGIC RECEPTOR BLOCKING AGENT; NITRIC OXIDE;

ANTIBIOTIC THERAPY; BRONCHIECTASIS; CHILDHOOD DISEASE; CILIARY DYSKINESIA; CILIARY MOTILITY; CILIATED EPITHELIUM; CLINICAL TRIAL (TOPIC); CONFERENCE PAPER; CYSTIC FIBROSIS; ENDOSCOPIC SINUS SURGERY; EVIDENCE BASED PRACTICE; HUMAN; LOBECTOMY; LUNG FUNCTION; LUNG INJURY; LUNG TRANSPLANTATION; MUCOCILIARY CLEARANCE; OUTCOME ASSESSMENT; PATIENT CARE; QUALITY OF LIFE; RESPIRATORY FAILURE; RESPIRATORY TRACT INFECTION; RESPIRATORY TRACT INFLAMMATION;

CHILD; CHRONIC DISEASE; DISEASE MANAGEMENT; EVIDENCE-BASED MEDICINE; HUMANS; KARTAGENER SYNDROME; LUNG DISEASES; NASAL CAVITY; NITRIC OXIDE; OTITIS MEDIA WITH EFFUSION; OTORHINOLARYNGOLOGIC DISEASES; RESPIRATORY FUNCTION TESTS; RESPIRATORY TRACT INFECTIONS; RHINITIS; SINUSITIS; TOMOGRAPHY, X-RAY COMPUTED;

EID: 80053001262     PISSN: 15463222     EISSN: 19435665     Source Type: Journal    
DOI: 10.1513/pats.201103-024SD     Document Type: Conference Paper

References (51)

1. Coren ME, Meeks M, Morrison I, Buchdahl RM, Bush A. Primary ciliary dyskinesia: age at diagnosis and symptom history. Acta Paediatr 2002;91:667-669. (Pubitemid 34779328)
2. Noone PG, Leigh MW, Sannuti A, Minnix SL, Carson JL, Hazucha M, Zariwala MA, Knowles MR. Primary ciliary dyskinesia: diagnostic and phenotypic features. Am J Respir Crit Care Med 2004;169:459-467. (Pubitemid 38187117)
3. Hossain T, Kappelman MD, Perez-Atayde AR, Young GJ, Huttner KM, Christou H. Primary ciliary dyskinesia as a cause of neonatal respiratory distress: implications for the neonatologist. J Perinatol 2003;23:684-687. (Pubitemid 37541013)
4. Ferkol T, Leigh M. Primary ciliary dyskinesia and newborn respiratory distress. Semin Perinatol 2006;30:335-340. (Pubitemid 44827224)
5. Pittman JE, LaFave C, Ferkol T, Sagel SD, Dell SD, Milla CE, Jones P, Johnson RC, Leigh MW, Knowles MR, et al. Characteristics of primary ciliary dyskinesia in children under five years of age [abstract]. Am J Respir Crit Care Med (In press)
6. Kennedy MP, Omran H, Leigh MW, Dell S, Morgan L, Molina PL, Robinson BV, Minnix SL, Olbrich H, Severin T, et al. Congenital heart disease and other heterotaxic defects in a large cohort of patients with primary ciliary dyskinesia. Circulation 2007;115:2814-2821. (Pubitemid 46869667)
7. Livraghi A, Randell SH. Cystic fibrosis and other respiratory diseases of impaired mucus clearance. Toxicol Pathol 2007;35:116-129. (Pubitemid 46328419)
8. Hellinckx J, Demedts M, De Boeck K. Primary ciliary dyskinesia: evolution of pulmonary function. Eur J Pediatr 1998;157:422-426. (Pubitemid 28225448)
9. Santamaria F, Montella S, Tiddens HA, Guidi G, Casotti V, Maglione M, de Jong PA. Structural and functional lung disease in primary ciliary dyskinesia. Chest 2008;134:351-357.
10. Ellerman A, Bisgaard H. Longitudinal study of lung function in a cohort of primary ciliary dyskinesia. Eur Respir J 1997;10:2376-2379. (Pubitemid 27479564)
11. Marthin JK, Petersen N, Skovgaard LT, Nielsen KG. Lung function in patients with primary ciliary dyskinesia: a cross-sectional and 3- decade longitudinal study. Am J Respir Crit Care Med 2010;181:1262-1268.
12. Jain K, Padley SP, Goldstraw EJ, Kidd SJ, Hogg C, Biggart E, Bush A. Primary ciliary dyskinesia in the paediatric population: range and severity of radiological findings in a cohort of patients receiving tertiary care. Clin Radiol 2007;62:986-993. (Pubitemid 47317140)
13. Kennedy MP, Noone PG, Leigh MW, Zariwala MA, Minnix SL, Knowles MR, Molina PL. High-resolution CT of patients with primary ciliary dyskinesia. AJR Am J Roentgenol 2007;188:1232-1238. (Pubitemid 46668503)
14. Zihlif N, Paraskakis E, Lex C, Van de Pohl LA, Bush A. Correlation between cough frequency and airway inflammation in children with primary ciliary dyskinesia. Pediatr Pulmonol 2005;39:551-557. (Pubitemid 40696327)
15. Bush A, Payne D, Pike S, Jenkins G, Henke MO, Rubin BK. Mucus properties in children with primary ciliary dyskinesia: comparison with cystic fibrosis. Chest 2006;129:118-123. (Pubitemid 43265251)
16. Hilliard TN, Regamey N, Shute JK, Nicholson AG, Alton EW, Bush A, Davies JC. Airway remodelling in children with cystic fibrosis. Thorax 2007;62:1074-1080. (Pubitemid 350206200)
17. Piacentini GL, Bodini A, Peroni D, Rigotti E, Pigozzi R, Pradal U, Boner AL. Nasal nitric oxide for early diagnosis of primary ciliary dyskinesia: practical issues in children. Respir Med 2008;102:541-547.
18. Leigh MW, O'Callaghan C, Knowles MR. The challenges of diagnosing primary ciliary dyskinesia. Proc Am Thorac Soc (In press).
19. Stocks J. Pulmonary function tests in infants and preschool children. In: Chernick V, Boat T, Wilmott RW, Bush A, editors. Kendig's disorders of the respiratory tract in children, 7th ed. Philadelphia, PA: Elsevier; 2006. p. 129-167.
20. Davis SD, Rosenfeld M, Kerby GS, Brumback L, Kloster MH, Acton JD, Colin AA, Conrad CK, Hart MA, Hiatt PW, et al. Multicenter evaluation of infant lung function tests as cystic fibrosis clinical trial endpoints. Am J Respir Crit Care Med 2010;182:1387-1397.
21. Beydon N, Davis SD, Lombardi E, Allen JL, Arets HG, Aurora P, Bisgaard H, Davis GM, Ducharme FM, Eigen H, et al. An official American Thoracic Society/European Respiratory Society statement: pulmonary function testing in preschool children. Am J Respir Crit Care Med 2007;175:1304-1345. (Pubitemid 46905757)
22. Eigen H, Bieler H, Grant D, Christoph K, Terrill D, Heilman DK, Ambrosius WT, Tepper RS. Spirometric pulmonary function in healthy preschool children. Am J Respir Crit Care Med 2001;163:619-623. (Pubitemid 32230819)
23. Nystad W, Samuelsen SO, Nafstad P, Edvardsen E, Stensrud T, Jaakkola JJ. Feasibility of measuring lung function in preschool children. Thorax 2002;57:1021-1027. (Pubitemid 35440760)
24. Brown DE, Pittman JE, Leigh MW, Fordham L, Davis SD. Early lung disease in young children with primary ciliary dyskinesia. Pediatr Pulmonol 2008;43:514-516. (Pubitemid 351657321)
25. Long FR, Castile RG, Brody AS, Hogan MJ, Flucke RL, Filbrun DA, McCoy KS. Lungs in infants and young children: improved thinsection CT with a noninvasive controlled-ventilation technique: initial experience. Radiology 1999;212:588-593. (Pubitemid 29356585)
26. Brody AS, Frush DP, Huda W, Brent RL. Radiation risk to children from computed tomography. Pediatrics 2007;120:677-682. (Pubitemid 47358314)
27. Barbato A, Frischer T, Kuehni CE, Snijders D, Azevedo I, Baktai G, Bartoloni L, Eber E, Escribano A, Haarman E, et al. Primary ciliary dyskinesia: a consensus statement on diagnostic and treatment approaches in children. Eur Respir J 2009;34:1264-1276.
28. Campbell RG, Birman CS, Morgan L. Management of otitis media with effusion in children with primary ciliary dyskinesia: a literature review. Int J Pediatr Otorhinolaryngol 2009;73:1630-1638.
29. Majithia A, Fong J, Hariri M, Harcourt J. Hearing outcomes in children with primary ciliary dyskinesia: a longitudinal study. Int J Pediatr Otorhinolaryngol 2005;69:1061-1064. (Pubitemid 40956982)
30. Hadfield PJ, Rowe-Jones JM, Bush A, Mackay IS. Treatment of otitis media with effusion in children with primary ciliary dyskinesia. Clin Otolaryngol Allied Sci 1997;22:302-306. (Pubitemid 28346966)
31. Baroody FM. Mucociliary transport in chronic rhinosinusitis. Clin Allergy Immunol 2007;20:103-119.
32. Min YG, Shin JS, Choi SH, Chi JG, Yoon CJ. Primary ciliary dyskinesia: ultrastructural defects and clinical features. Rhinology 1995;33:189-193. (Pubitemid 26050412)
33. Parsons DS, Greene BA. A treatment for primary ciliary dyskinesia: efficacy of functional endoscopic sinus surgery. Laryngoscope 1993; 103:1269-1272. (Pubitemid 23335858)
34. Flume PA, O'Sullivan BP, Robinson KA, Goss CH, Mogayzel PJ Jr, Willey-Courand DB, Bujan J, Finder J, Lester M, Quittell L, et al. Cystic fibrosis pulmonary guidelines: chronic medications for maintenance of lung health. Am J Respir Crit Care Med 2007;176:957-969. (Pubitemid 350127838)
35. Hansell DM. Bronchiectasis. Radiol Clin North Am 1998;36:107-128.
36. De Jong PA, Lindblad A, Rubin L, Hop WC, de Jongste JC, Brink M, Tiddens HA. Progression of lung disease on computed tomography and pulmonary function tests in children and adults with cystic fibrosis. Thorax 2006;61:80-85. (Pubitemid 43106983)
37. Smit HJ, Schreurs AJ, Van den Bosch JM, Westermann CJ. Is resection of bronchiectasis beneficial in patients with primary ciliary dyskinesia? Chest 1996;109:1541-1544.
38. Balkanli K, Genc O, Dakak M, Gurkok S, Gozubuyuk A, Caylak H, Yucel O. Surgical management of bronchiectasis: analysis and shortterm results in 238 patients. Eur J Cardiothorac Surg 2003;24:699-702. (Pubitemid 37324541)
39. Zhang P, Jiang G, Ding J, Zhou X, Gao W. Surgical treatment of bronchiectasis: a retrospective analysis of 790 patients. Ann Thorac Surg 2010;90:246-250.
40. Otgun I, Karnak I, Tanyel FC, Senocak ME, Buyukpamukcu N. Surgical treatment of bronchiectasis in children. J Pediatr Surg 2004;39:1532-1536. (Pubitemid 39349737)
41. Date H, Yamashita M, Nagahiro I, Aoe M, Andou A, Shimizu N. Living-donor lobar lung transplantation for primary ciliary dyskinesia. Ann Thorac Surg 2001;71:2008-2009. (Pubitemid 32554440)
42. Mallarkey G, Sutherland J. Disease management handbook. Auckland, New Zealand: Adis International; 1999.
43. Davis RM, Wagner EG, Groves T. Advances in managing chronic disease: research, performance measurement, and quality improvement are key. BMJ 2000;320:525-526.
44. Mahadeva R, Webb K, Westerbeek RC, Carroll NR, Dodd ME, Bilton D, Lomas DA. Clinical outcome in relation to care in centres specialising in cystic fibrosis: cross sectional study. BMJ 1998;316:1771-1775. (Pubitemid 28269150)
45. Walters S, Britton J, Hodson ME. Hospital care for adults with cystic fibrosis: an overview and comparison between special cystic fibrosis clinics and general clinics using a patient questionnaire. Thorax 1994;49:300-306. (Pubitemid 24149190)
46. U.S. Department of Health and Human Services Food and Drug Administration. Patient-reported outcome measures: use in medical product development to support labeling claims. Washington DC: US Government Printing Office; 2009.
47. Goss CH, Quittner AL. Patient-reported outcomes in cystic fibrosis. Proc Am Thorac Soc 2007;4:378-386. (Pubitemid 47330875)
48. Modi AC, Quittner AL. Validation of a disease-specific measure of health-related quality of life for children with cystic fibrosis. J Pediatr Psychol 2003;28:535-545. (Pubitemid 37449136)
49. Quittner AL, Buu A, Messer MA, Modi AC, Watrous M. Development and validation of The Cystic Fibrosis Questionnaire in the United States: a health-related quality-of-life measure for cystic fibrosis. Chest 2005;128:2347-2354. (Pubitemid 41507578)
50. McCoy KS, Quittner AL, Oermann CM, Gibson RL, Retsch-Bogart GZ, Montgomery AB. Inhaled aztreonam lysine for chronic airway Pseudomonas aeruginosa in cystic fibrosis. Am J Respir Crit Care Med 2008;178:921-928.
51. Dell SD, Dupois A, Knowles MR, Quittner AL, Leigh MW. Impaired health-related quality of life (HRQOL) in children with primary ciliary dyskinesia (PCD) [abstract]. Am J Respir Crit Care Med 2009;179:A5982.