title: Integrating patient reported outcomes with clinical cancer registry data: a feasibility study of the electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) system.
abstract: BACKGROUND
  Routine measurement of Patient Reported Outcomes (PROs) linked with clinical data across the patient pathway is increasingly important for informing future care planning. The innovative electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system was developed to integrate PROs, collected online at specified post-diagnostic time-points, with clinical and treatment data in cancer registries.
  
  
  OBJECTIVE
  This study tested the technical and clinical feasibility of ePOCS by running the system with a sample of potentially curable breast, colorectal, and prostate cancer patients in their first 15 months post diagnosis.
  
  
  METHODS
  Patients completed questionnaires comprising multiple Patient Reported Outcome Measures (PROMs) via ePOCS within 6 months (T1), and at 9 (T2) and 15 (T3) months, post diagnosis. Feasibility outcomes included system informatics performance, patient recruitment, retention, representativeness and questionnaire completion (response rate), patient feedback, and administration burden involved in running the system.
  
  
  RESULTS
  ePOCS ran efficiently with few technical problems. Patient participation was 55.21% (636/1152) overall, although varied by approach mode, and was considerably higher among patients approached face-to-face (61.4%, 490/798) than by telephone (48.8%, 21/43) or letter (41.0%, 125/305). Older and less affluent patients were less likely to join (both P<.001). Most non-consenters (71.1%, 234/329) cited information technology reasons (ie, difficulty using a computer). Questionnaires were fully or partially completed by 85.1% (541/636) of invited participants at T1 (80 questions total), 70.0% (442/631) at T2 (102-108 questions), and 66.3% (414/624) at T3 (148-154 questions), and fully completed at all three time-points by 57.6% (344/597) of participants. Reminders (mainly via email) effectively prompted responses. The PROs were successfully linked with cancer registry data for 100% of patients (N=636). Participant feedback was encouraging and positive, with most patients reporting that they found ePOCS easy to use and that, if asked, they would continue using the system long-term (86.2%, 361/419). ePOCS was not administratively burdensome to run day-to-day, and patient-initiated inquiries averaged just 11 inquiries per month.
  
  
  CONCLUSIONS
  The informatics underlying the ePOCS system demonstrated successful proof-of-concept--the system successfully linked PROs with registry data for 100% of the patients. The majority of patients were keen to engage. Participation rates are likely to improve as the Internet becomes more universally adopted. ePOCS can help overcome the challenges of routinely collecting PROs and linking with clinical data, which is integral for treatment and supportive care planning and for targeting service provision.
authors.affiliation: School of Social, Psychological and Communication Sciences, Faculty of Health and Social Sciences, Leeds Metropolitan University, Leeds, United Kingdom. l.j.ashley@leedsmet.ac.uk.
authors.forename: Laura
authors.initials: L
authors.lastname: Ashley
authors.forename: Helen
authors.initials: H
authors.lastname: Jones
authors.forename: James
authors.initials: J
authors.lastname: Thomas
authors.forename: Alex
authors.initials: A
authors.lastname: Newsham
authors.forename: Amy
authors.initials: A
authors.lastname: Downing
authors.forename: Eva
authors.initials: E
authors.lastname: Morris
authors.forename: Julia
authors.initials: J
authors.lastname: Brown
authors.forename: Galina
authors.initials: G
authors.lastname: Velikova
authors.forename: David
authors.initials: D
authors.lastname: Forman
authors.forename: Penny
authors.initials: P
authors.lastname: Wright
mesh_terms: D005240:Feasibility Studies; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000145:classification / Q000628:therapy*; D011788:Quality of Life; D012042:Registries; D017741:Survivors; D016896:Treatment Outcome
keywords: Internet; cancer; cancer registry; electronic data capture; health information technology; health-related quality of life; oncology; patient reported outcome measures; patient reported outcomes; survivorship