title: Patients' experiences of referral for colorectal cancer.
abstract: BACKGROUND
  Outcomes for colorectal cancer patients vary significantly. Compared to other countries, Australia has a good record with patient outcomes, yet there is little information available on the referral pathway. This paper explores the views of Australian patients and their experiences of referral for colorectal cancer treatment following diagnosis; the aim was to improve our understanding of the referral pathway and guide the development of future interventions.
  
  
  METHODS
  A purposive sampling strategy was used, recruiting 29 patients representing urban and rural areas from 3 Australian states who participated in 4 focus groups. Seven patients provided individual interviews to supplement the data. Recordings were transcribed verbatim, data was coded with NVivo software and analysed thematically before deductive analysis.
  
  
  RESULTS
  Four aspects of the referral process were identified by patients, namely detection/diagnosis, referral for initial treatment/specialist care, the roles of the GP/specialist, and the patient's perceived involvement in the process. The referral process was characterised by a lack of patient involvement, with few examples of shared decision-making and few examples of limited choice. However, patients did not always feel they had the knowledge to make informed decisions. Information exchange was highly valued by patients when it occurred, and it increased their satisfaction with the process. Other factors mediating care included the use of the public versus private health system, the quality of information exchange (GP to specialist and GP to patient), continuity of care between GP and specialist, and the extent of information provision when patients moved between specialist and GP care.
  
  
  CONCLUSIONS
  Patients described poor GP continuity, ad hoc organisational systems and limited information exchange, at both interpersonal and inter-organisational levels, all leading to sub-optimal care. Implementation of a system of information feedback to GPs and engagement with them might improve information exchange for patients, enabling them to be more involved in improved referral outcomes.
authors: UNSW Research Centre for Primary Health Care and Equity, School of Public Health and Community Medicine, UNSW, Sydney, Australia. shanewpascoe@hotmail.com.
authors: Shane W
authors: SW
authors: Pascoe
authors: Craig
authors: C
authors: Veitch
authors: Lisa J
authors: LJ
authors: Crossland
authors: Justin J
authors: JJ
authors: Beilby
authors: Allan
authors: A
authors: Spigelman
authors: John
authors: J
authors: Stubbs
authors: Mark F
authors: MF
authors: Harris
mesh_terms: D001294:Attitude to Health; D001315:Australia; D015179:Colorectal Neoplasms / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D003266:Continuity of Patient Care; D003657:Decision Making; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D010358:Patient Participation / Q000523:psychology*; D017060:Patient Satisfaction; D036301:Qualitative Research; D012017:Referral and Consultation
references: Aust Fam Physician. 2006 Apr;35(4):186-7
references: 16642231
references: Fam Pract. 2000 Dec;17(6):475-9
references: 11120718
references: Am Surg. 2010 Oct;76(10):1043-6
references: 21105605
references: Colorectal Dis. 2007 May;9(4):340-3
references: 17432987
references: Cancer Nurs. 2011 Jul-Aug;34(4):E1-9
references: 20885301
references: BMC Health Serv Res. 2008 Feb 28;8:49
references: 18307790
references: Patient Educ Couns. 2011 Sep;84(3):352-8
references: 21621950
references: Aust Fam Physician. 2008 Apr;37(4):259-61
references: 18398525
references: Fam Pract. 2006 Feb;23(1):15-9
references: 16286462
references: Br J Cancer. 2011 Mar 15;104(6):934-40
references: 21364593
references: Lancet. 2011 Jan 8;377(9760):127-38
references: 21183212
references: Med J Aust. 2013 Apr 1;198(6):300-1
references: 23545018
references: J Health Psychol. 1998 Jul;3(3):329-48
references: 22021395
references: BMC Health Serv Res. 2006 Apr 03;6:43
references: 16584544
references: J Health Serv Res Policy. 2012 Apr;17(2):110-8
references: 22008712
references: Colorectal Dis. 2004 Nov;6(6):428-31
references: 15521930
references: Br J Cancer. 2004 Nov 1;91(9):1663-5
references: 15477869
references: Fam Pract. 2002 Aug;19(4):369-74
references: 12110557
references: Br J Cancer. 2012 Mar 27;106(7):1262-7
references: 22415239