QUALITY OF LIFE OF CHILDREN, ADOLESCENTS AND YOUNG ADULTS SUFFERING FROM CYSTIC FIBROSIS AND OF THEIR PARENTS
DOI:
https://doi.org/10.12775/4092Keywords
quality of life, children, cystic fibrosisAbstract
Aim. Assessment of quality of life of children, adolescents and adults suffering from cystic fibrosis and of their parents.
Methods. Examination involved 23 persons (16 patients and 7 parents). Questionnaires CDQ-12-13, CFQ-14 and CFQ-6-13 were used as research tools.
Results. Children between 12 and 13 years old, as well as young adults and adolescents ranked their physical aptitude and their food-related behaviours as highest, and the appearance of their bodies as lowest. Parents, on the other hand, assessed eating as a difficult effort for their children. A decisive majority of the parents claimed, that everyday therapy was time-consuming, yet fulfilling the therapy recommendations was not intensely difficult for the child. Also for adolescents and young adults, only minimally do the limitations resulting from a prolonged systematic therapy obstruct everyday life.
Conclusion. The assessment of quality of life of children suffering from cystic fibrosis is varied. The highest patients' quality of life assessment is found in schoolchildren aged 12 to 13. Patients assess their body image as very poor.
References
Davies JC, Alton EW, Bush A, Cystic fibrosis. BMJ 2007 Dec 15; 335(7632):1255-9.
Ernst MM, MC Johnson, Stark LJ, Developmental and psychosocial issues in cystic fibrosis. Child Adolesc Psychiatr Clin N Am 2010 Apr; 19(2): 263-83.
Program Badań Przesiewowych w Polsce na lata 2009-2014 www.mz.gov.pl
Narasimhan M, Cohen R, New and investigational treatments in cystic fibrosis. Rher Ady Respir Dis 2011 Mar 3 [PubMed 7.05.2011]
Zemanick ET, Sagel SD, Harris JK, The airway microbione in cystic fibrosis and implications for treatment. Curr Opin Pediatr 2011 Apr 13. [PubMed7.05.2011]. DOI: http://dx.doi.org/10.1097/MOP.0b013e32834604f2, http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=000290557600010&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=b7bc2757938ac7a7a821505f8243d9f3
O'Sullivan BP, Flume P, The clinical approach to lung disease in patients with cystic fibrosis. Semin Respir Crit Care Med 2009 Oct; 30(5): 505-13.
Dalcin T, Abreu e Silva, Cystic fibrosis in adults: diagnostic and therapeutic aspects. J Bras Pneumol 2008 Feb; 34(2):107-17.
Pressler T, Targeting airway inflammation in cystic fibrosis children: past, present, and future. Peadiatr Drugs 2011 Jun 1; 13(3): 141-7.
Jelalian E, Stark LJ, Reynolds L, et al., Nutrition intervention for weight gain in cystic fibrosis: a meta analysis. J Pediatr 1998 Mar; 132(3Pt1): 486-92. DOI: http://dx.doi.org/10.1016/S0022-3476(98)70025-3, http://www.ncbi.nlm.nih.gov/pubmed/9544906
McKay KO, Cystic fibrosis: benefis and clinical outcome. J Inherit Metab Dis 2007 Aug; 30(4): 544-55. DOI: http://dx.doi.org/10.1007/s10545-007-0620-0, http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=000249305100016&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=b7bc2757938ac7a7a821505f8243d9f3
Elborn JS, Hodson M, Bertram C, Implementation of European standards of care for cystic fibrosis — provision of care, Journal of Cystic Fibrosis 8(2009): 348-355. DOI: http://dx.doi.org/10.1016/j.jcf.2009.05.004, http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=000270630500007&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=b7bc2757938ac7a7a821505f8243d9f3
O'Sullivan BP, Freedman SD; Cystic fibrosis. Lancet. 2009 May 30; 373(9678): 1891-904. http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=000266616400033&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=b7bc2757938ac7a7a821505f8243d9f3
Dodge JA, Lewis PA, Stanton M, Wilsher J, Cystic fibrosis mortality and survival in the UK: 1947-2003. Eur Respir J 2007; 29: 522-6.
Pizzignacco TM, de Mello DF, de Lima RA, Stigma and cystic fibrosis. Rey Lat Am Enfermagem 2010 Jan-Feb; 18(1): 139-42. DOI: http://dx.doi.org/10.1590/S0104-11692010000100021, http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=000276307400021&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=b7bc2757938ac7a7a821505f8243d9f3
Kochman D, Wybrane aspekty jakości życia dzieci i młodzieży. Pielęgniarstwo Polskie 2006; 2,22: 112-114.
Uchmanowicz I, Łoboz-Grudzień K, Jakość życiadefinicje i narzędzia badawcze- przegląd literatury, Family Medicine & Primary Care Review 2008; 10,2: 245-252.
Abbott J, Health-related quality of life measurement in cystic fibrosis: advances and limitations. Chron Respir Dis 2009; 6(1): 31-41.
Orenstein D, The Quality of Well-Being In Cystic Fibrosis, Chest 1989;95:344-347.
Cohen MA, Ribeiro MA, Ribeiro AF, Ribeiro JD, Morcillo AM; Quality of life assessment in patients with cystic fibrosis by means of the Cystic Fibrosis Questionnaire. J Bras Pneumol 2011 Apr; 37(2): 184-192.
Jankaskas JR, Mallory GB, Lung transplantation in cystic fibrosis, Chest 1998; 113, 217-226. DOI: http://dx.doi.org/10.1378/chest.113.1.217
Gomez C, Revnaud-Gaubert M; Long-term outcome of lung transplantation. Rev Pneumol Clin 2010 Feb; 67(1): 64-73. DOI: http://dx.doi.org/10.1016/j.pneumo.2010.12.007, http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=000288769100009&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=b7bc2757938ac7a7a821505f8243d9f3, http://www.ncbi.nlm.nih.gov/pubmed/21353974
Basa A, Pawlaczyk B (promotor), Jakość życia dzieci z mukowiscydozą i chorobą trzewną: praca doktorska, Akademia Medyczna im. Karola Marcinkowskiego Katedra Pielęgniarstwa Pediatrycznego w Poznaniu, 2004, GBL: 45/22725.
Ziaian T, Sawyer M, Reynolds K, Carbone J., Clark J, Baghurst P, et al, Treatment burden and health-related quality of life of children with diabetes, cystic fibrosis and asthma. J Paediatr Child Health. 2006 Oct;42(10):596-600.
Sands D, Borawska-Kowalczyk U, Polska adaptacja Kwestionariusza Jakości Życia przeznaczonego dla dzieci i dorosłych chorych na mukowiscydozę oraz ich rodziców (CFQ-R), Pediatria Polska 2009, 84,2, 165-172.
Hegarty M, Macdonald J, Watter P, Wilson C, Quality of live young people with cystic fibrosis: effects of hospitalization, age and gender, and differences in parent/child perceptions, Child Care Health Dey 2009 Jul; 35(4): 462-8. DOI: http://dx.doi.org/10.1111/j.1365-2214.2008.00900.x
Dębska G, Jakość życia chorych na mukowiscydozę, Acta Pneumonologia et Allergologica Pediatrica 2003; 6,3:39-42.
Havermans T., Colpaert K., Vanharen L., Dupont L. J.; Health related quality of life in cystic fibrosis: To work or not to work?; Journal of Cystic Fibrosis 8 (2009), 218-223. DOI: http://dx.doi.org/10.1016/j.jcf.2009.03.002, http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=000266461700009&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=b7bc2757938ac7a7a821505f8243d9f3
Kaplan SH, Greenfield S, Ware JE Jr, Assessing the Effects of Physician-Patient Interactions on the Outcomes of Chronic Disease, Med Care. 1989 Mar;27(3 Suppl):S110-S127. DOI: http://dx.doi.org/10.1097/00005650-198903001-00010
Eiser C, Psychological Effects of Chronic Disease, J. Child Psychol Psychiatry, 1990 Jan; 31(1): 85-98.
Staaba D, Wenningera K, Geberta N, Ruppratha K, Bissonb S, Trettinc M, et al, Quality of life in patients with cystic fibrosis and their parents: what is important besides disease severity, Thorax 1998;53:727-731.
Published
How to Cite
Issue
Section
Stats
Number of views and downloads: 0
Number of citations: 0