title: A pilot study on understanding the journey of advanced prostate cancer patients.
abstract: OBJECTIVE
  To understand the journey of advanced prostate cancer patients for supporting development of an innovative patient journey browser.
  
  
  BACKGROUND
  Prostate cancer is one of the common cancers in Australia. Due to the chronic nature of the disease, it is important to have effective disease management strategy and care model. Multi-disciplinary care is a well-proven approach for chronic disease management. The Multi-disciplinary team (MDT) can function more effectively if all the required information is available for the clinical decision support. The development of innovative technology relies on an accurate understanding of the advanced prostate cancer patient's journey over a prolonged period. This need arises from the fact that advanced prostate cancer patients may follow various treatment paths and change their care providers. As a result of this, it is difficult to understand the actual sources of patient's clinical records and their treatment patterns. The aim of the research is to understand variable sources of clinical records, treatment patterns, alternative therapies, over the counter (OTC) medications of advanced prostate cancer patients. This study provides better and holistic understanding of advanced prostate cancer journey.
  
  
  METHODS
  The study was conducted through an on-line survey developed to seek and analyse the responses from the participants. The on-line questionnaire was carefully developed through consultations with the clinical researchers at the Australian Prostate Cancer Research Centre-Queensland, prostate cancer support group representatives and health informaticians at the Australian E-Health Research Centre. The non-identifying questionnaire was distributed to the patients through prostate cancer support groups in Queensland, Australia. The pilot study was carried out between August 2010 and December 2010.
  
  
  RESULTS
  The research made important observations about the advanced prostate cancer journey. It showed that General Practitioner (GP) was the common source of patient's clinical records (41%) followed by Urologist (14%) and other clinicians (14%). The data analysis also showed that selenium was the common complementary supplement (55%) used by the patients and about 48% patients did not use any OTC drugs. The most common OTC used by the patients was Paracetamol (about 45%).
  
  
  CONCLUSIONS
  The results have provided a foundation to the architecture of the proposed technology solution. The outcomes of this study are incorporated in design of the proposed patient journey browser system. A basic version of the system is currently being used at the advanced prostate cancer MDT meetings.
authors: The Australian E-Health Research Centre, CSIRO ICT Centre, Brisbane, Australia. amol.wagholikar@csiro.au
authors: Amol
authors: A
authors: Wagholikar
authors: Maggie
authors: M
authors: Fung
authors: Colleen
authors: C
authors: Nelson
mesh_terms: D001315:Australia; D019468:Disease Management; D019538:Health Care Surveys; D006801:Humans; D033183:Interdisciplinary Communication; D008297:Male; D009367:Neoplasm Staging; D010865:Pilot Projects; D010818:Practice Patterns, Physicians'; D011471:Prostatic Neoplasms / Q000188:drug therapy* / Q000473:pathology*