Health-resource use and quality of life in children with bronchiectasis: a multi-center pilot cohort study

Abstract

Background: Bronchiectasis in children is an important, but under-researched, chronic pulmonary disorder that has negative impacts on health-related quality of life. Despite this, it does not receive the same attention as other chronic pulmonary conditions in children such as cystic fibrosis. We measured health resource use and health-related quality of life over a 12-month period in children with bronchiectasis.; Methods: We undertook a prospective cohort study of 85 children aged < 18-years with high-resolution chest computed-tomography confirmed bronchiectasis undergoing management in three pediatric respiratory medical clinics in Darwin and Brisbane, Australia and Auckland, New Zealand. Children with cystic fibrosis or receiving cancer treatment were excluded. Data collected included the frequency of healthcare attendances (general practice, specialists, hospital and/or emergency departments, and other), medication use, work and school/childcare absences for parents/carers and children respectively, and both parent/carer and child reported quality of life and cough severity.; Results: Overall, 951 child-months of observation were completed for 85 children (median age 8.7-years, interquartile range 5.4-11.3). The mean (standard deviation) number of exacerbations was 3.3 (2.2) per child-year. Thirty of 264 (11.4%) exacerbation episodes required hospitalization. Healthcare attendance and antibiotic use rates were high (30 and 50 per 100 child-months of observation respectively). A carer took leave from work for 53/236 (22.5%) routine clinic visits. Absences from school/childcare due to bronchiectasis were 24.9 children per 100 child-months. Quality of life scores for both the parent/carer and child were highly-correlated with one another, remained stable over time and were negatively associated with cough severity.; Conclusions: Health resource use in this cohort of children is high, reflecting their severe disease burden. Studies are now needed to quantify the direct and societal costs of disease and to evaluate interventions that may reduce disease burden, particularly hospitalizations.J Paediatr Child Health. 2009 Jan-Feb;45(1-2):42-7. (PMID: 19208065); Thorax. 2010 Sep;65(9):819-23. (PMID: 20805179); Pediatr Pulmonol. 2012 Jan;47(1):68-75. (PMID: 21830316); Chest. 2012 Apr;141(4):1018-1024. (PMID: 21885727); Thorax. 2012 Aug;67(8):689-93. (PMID: 22628120); Chest. 2013 Dec;144(6):1819-1826. (PMID: 23928647); Pediatrics. 2013 Dec;132(6):e1562-9. (PMID: 24249824); Lancet Respir Med. 2013 Oct;1(8):610-620. (PMID: 24461664); Chest. 2014 Sep;146(3):762-774. (PMID: 24811693); BMC Pediatr. 2014 Dec 10;14:4. (PMID: 25492164); N Z Med J. 2015 Sep 04;128(1421):30-8. (PMID: 26370753); Pediatr Pulmonol. 2016 May;51(5):450-69. (PMID: 26840008); Thorax. 2016 Aug;71(8):695-700. (PMID: 26842959); Aust Fam Physician. 2016 Mar;45(3):134-8. (PMID: 27052051); Aust Fam Physician. 2015 Dec;44(12):877-9. (PMID: 27054203); Eur Respir J. 2016 Sep;48(3):632-47. (PMID: 27288031); Front Pediatr. 2017 Feb 20;5:27. (PMID: 28265556); J Antimicrob Chemother. 2017 Jun 1;72(6):1832-1840. (PMID: 28333294); Child Care Health Dev. 2017 Sep;43(5):645-662. (PMID: 28543609); Front Pediatr. 2017 Apr 24;5:84. (PMID: 28596950); Arch Dis Child. 2017 Nov;102(11):1044-1048. (PMID: 28814419); J Paediatr Child Health. 2018 Jun;54(6):671-676. (PMID: 29341387); Respir Med. 2018 Apr;137:35-39. (PMID: 29605210); BMC Pulm Med. 2018 May 22;18(1):83. (PMID: 29788932); J Paediatr Child Health. 2019 Jan;55(1):54-58. (PMID: 30040141); Lancet. 2018 Sep 8;392(10150):866-879. (PMID: 30215382); BMC Health Serv Res. 2018 Sep 19;18(1):722. (PMID: 30231872); Lancet. 2018 Oct 6;392(10154):1197-1206. (PMID: 30241722); Natl Health Stat Report. 2018 Sep;(118):1-7. (PMID: 30312152); Pediatr Pulmonol. 2018 Dec;53(12):1662-1669. (PMID: 30325109); Front Pediatr. 2018 Dec 03;6:379. (PMID: 30560110); Eur Respir J. 1998 Feb;11(2):462-6. (PMID: 9551755). Linking ISSN: 14726963. Subset: MEDLINE; Grant Information: 1019834 National Health and Medical Research Council; 1040830 National Health and Medical Research Council; 1075119 National Health and Medical Research Council; 1058213 National Health and Medical Research Council; 10450830 National Health and Medical Research Council; 3702764/3539 Cure Kids Date of Electronic Publication: 2019 Aug 13. ; Original Imprints: Publication: London : BioMed Central, [2001- <br />