title: Unmet needs of patients with chronic obstructive pulmonary disease (COPD): a qualitative study on patients and doctors.
abstract: BACKGROUND
  Chronic Obstructive Pulmonary Disease (COPD) is a chronic disease with repeated exacerbations resulting in gradual debilitation. The quality of life has been shown to be poor in patients with COPD despite efforts to improve self-management. However, the evidence on the benefit of self-management in COPD is conflicting. Whether this could be due to other unmet needs of patients have not been investigated. Therefore, we aimed to explore unmet needs of patients from both patients and doctors managing COPD.
  
  
  METHODS
  We conducted a qualitative study with doctors and patients in Malaysia. We used convenience sampling to recruit patients until data saturation. Eighteen patients and eighteen doctors consented and were interviewed using a semi-structured interview guide. The interviews were audio-recorded, transcribed verbatim and checked by the interviewers. Data were analysed using a thematic approach.
  
  
  RESULTS
  The themes were similar for both the patients and doctors. Three main themes emerged: knowledge and awareness of COPD, psychosocial and physical impact of COPD and the utility of self-management. Knowledge about COPD was generally poor. Patients were not familiar with the term chronic obstructive pulmonary disease or COPD. The word 'asthma' was used synonymously with COPD by both patients and doctors. Most patients experienced difficulties in their psychosocial and physical functions such as breathlessness, fear and helplessness. Most patients were not confident in self-managing their illness and prefer a more passive role with doctors directing their care.
  
  
  CONCLUSIONS
  In conclusion, our study showed that knowledge of COPD is generally poor. There was mislabelling of COPD as asthma by both patients and physicians. This could have resulted in the lack of understanding of treatment options, outcomes, and prognosis of COPD. The misconception that cough due to COPD was contagious, and breathlessness that resulted from COPD, had important physical and psychosocial impact, and could lead to social isolation. Most patients and physicians did not favour self-management approaches, suggesting innovations based on self-management may be of limited benefit.
authors.forename: Stalia S L
authors.initials: SS
authors.lastname: Wong
authors.forename: Nurdiana
authors.initials: N
authors.lastname: Abdullah
authors.forename: Adina
authors.initials: A
authors.lastname: Abdullah
authors.forename: Su-May
authors.initials: SM
authors.lastname: Liew
authors.forename: Siew-Mooi
authors.initials: SM
authors.lastname: Ching
authors.forename: Ee-Ming
authors.initials: EM
authors.lastname: Khoo
authors.forename: Moyez
authors.initials: M
authors.lastname: Jiwa
authors.affiliation: Department of Primary Care Medicine, University of Malaya Primary Care Research Group (UMPCRG), Faculty of Medicine, University of Malaya, Kuala Lumpur 50603, Malaysia. chiayc@um.edu.my.
authors.forename: Yook-Chin
authors.initials: YC
authors.lastname: Chia
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D003144:Communication Barriers; D018864:Cultural Diversity; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice / Q000208:ethnology; D006301:Health Services Needs and Demand; D006801:Humans; D007407:Interviews as Topic; D008296:Malaysia; D008297:Male; D008875:Middle Aged; D010044:Outpatient Clinics, Hospital; D010361:Patients / Q000706:statistics & numerical data; D058007:Physicians, Primary Care / Q000592:standards* / Q000706:statistics & numerical data; D029424:Pulmonary Disease, Chronic Obstructive / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D036301:Qualitative Research; D012648:Self Care
references.citation: Am J Respir Crit Care Med. 2001 Apr;163(5):1256-76
references.pmid: 11316667
references.citation: Int J Chron Obstruct Pulmon Dis. 2008;3(4):683-92
references.pmid: 19283915
references.citation: Palliat Med. 2012 Mar;26(2):139-51
references.pmid: 21543525
references.citation: Lancet. 2012 Dec 15;380(9859):2095-128
references.pmid: 23245604
references.citation: Lung. 2008 Sep-Oct;186(5):313-6
references.pmid: 18463922
references.citation: Prim Care Respir J. 2011 Sep;20(3):307-14, 1 p following 314
references.pmid: 21509413
references.citation: J Nurs Manag. 2012 Sep;20(6):802-13
references.pmid: 22967298
references.citation: Chron Respir Dis. 2012 Aug;9(3):183-91
references.pmid: 22848068
references.citation: Cochrane Database Syst Rev. 2007 Oct 17;(4):CD002990
references.pmid: 17943778
references.citation: Int J Nurs Stud. 2012 Feb;49(2):230-42
references.pmid: 22154095
references.citation: Thorax. 2009 Nov;64(11):956-62
references.pmid: 19736179
references.citation: Med J Aust. 2003 Mar 17;178(S6):S1-S39
references.pmid: 12633498
references.citation: Addict Behav. 2002 Mar-Apr;27(2):293-307
references.pmid: 11817769
references.citation: Patient Educ Couns. 2004 Mar;52(3):271-7
references.pmid: 14998597
references.citation: Respirology. 2001 Jun;6 Suppl:S9-11
references.pmid: 11438018
references.citation: J Clin Nurs. 2005 Aug;14(7):805-12
references.pmid: 16000094
references.citation: Int J Tuberc Lung Dis. 2004 Jan;8(1):2-14
references.pmid: 14974740
references.citation: Prim Care Respir J. 2012 Dec;21(4):384-91
references.pmid: 23138844
references.citation: Prev Med. 2005 Jun;40(6):779-84
references.pmid: 15850879
references.citation: Prim Care Respir J. 2011 Dec;20(4):389-95
references.pmid: 21448550