This paper is in the following e-collection/theme issue:

Participatory Medicine & E-Patients (758) Clinical Information and Decision Making (1328) Research Instruments, Questionnaires, and Tools (541)

Published on in Vol 15, No 10 (2013): October

Integrating Patient Reported Outcomes With Clinical Cancer Registry Data: A Feasibility Study of the Electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) System

Integrating Patient Reported Outcomes With Clinical Cancer Registry Data: A Feasibility Study of the Electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) System

Integrating Patient Reported Outcomes With Clinical Cancer Registry Data: A Feasibility Study of the Electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) System

Authors of this article:

Laura Ashley1 ;   Helen Jones2 ;   James Thomas3 ;   Alex Newsham2 ;   Amy Downing2 ;   Eva Morris2 ;   Julia Brown4 ;   Galina Velikova2 ;   David Forman5 ;   Penny Wright2
Article Authors Cited by (65) Tweetations (28) Metrics

Journals

  1. Sztankay M, Neppl L, Wintner L, Loth F, Willenbacher W, Weger R, Weyrer W, Steurer M, Rumpold G, Holzner B. Complementing clinical cancer registry data with patient reported outcomes: A feasibility study on routine electronic patient‐reported outcome assessment for the Austrian Myelome Registry. European Journal of Cancer Care 2019;28(6) View
  2. Hall P, Hamilton P, Hulme C, Meads D, Jones H, Newsham A, Marti J, Smith A, Mason H, Velikova G, Ashley L, Wright P. Costs of cancer care for use in economic evaluation: a UK analysis of patient-level routine health system data. British Journal of Cancer 2015;112(5):948 View
  3. Khoury A, Jernigan E, Chowdhury M, Loehr L, Nelson J. Feasibility of a healthcare system-based tetralogy of Fallot patient registry. Cardiology in the Young 2018;28(2):269 View
  4. Moloczij N, Gough K, Solomon B, Ball D, Mileshkin L, Duffy M, Krishnasamy M. Development of a hospital-based patient-reported outcome framework for lung cancer patients: a study protocol. Health and Quality of Life Outcomes 2018;16(1) View
  5. Holch P, Warrington L, Bamforth L, Keding A, Ziegler L, Absolom K, Hector C, Harley C, Johnson O, Hall G, Morris C, Velikova G. Development of an integrated electronic platform for patient self-report and management of adverse events during cancer treatment. Annals of Oncology 2017;28(9):2305 View
  6. Gilbert A, Sebag-Montefiore D, Davidson S, Velikova G. Use of patient-reported outcomes to measure symptoms and health related quality of life in the clinic. Gynecologic Oncology 2015;136(3):429 View
  7. Warrington L, Absolom K, Velikova G. Integrated care pathways for cancer survivors – a role for patient-reported outcome measures and health informatics. Acta Oncologica 2015;54(5):600 View
  8. Absolom K, Holch P, Woroncow B, Wright E, Velikova G. Beyond lip service and box ticking: how effective patient engagement is integral to the development and delivery of patient-reported outcomes. Quality of Life Research 2015;24(5):1077 View
  9. Maramba I, Davey A, Elliott M, Roberts M, Roland M, Brown F, Burt J, Boiko O, Campbell J. Web-Based Textual Analysis of Free-Text Patient Experience Comments From a Survey in Primary Care. JMIR Medical Informatics 2015;3(2):e20 View
  10. Groeneveld I, Goossens P, van Meijeren-Pont W, Arwert H, Meesters J, Rambaran Mishre A, Van Vree F, Vliet Vlieland T. Value-Based Stroke Rehabilitation: Feasibility and Results of Patient-Reported Outcome Measures in the First Year After Stroke. Journal of Stroke and Cerebrovascular Diseases 2019;28(2):499 View
  11. Ashley L, Velikova G, Downing A, Morris E, Wright P. Health‐related quality of life in cancer survivorship: Predictive power of the Social Difficulties Inventory. Psycho-Oncology 2017;26(11):1994 View
  12. Flott K, Graham C, Darzi A, Mayer E. Can we use patient-reported feedback to drive change? The challenges of using patient-reported feedback and how they might be addressed. BMJ Quality & Safety 2017;26(6):502 View
  13. Fleming J, Wood G, Seiler C, Cook A, Lent M, Still C, Benotti P, Irving B. Electronically captured, patient‐reported physical function: an important vital sign in obesity medicine. Obesity Science & Practice 2016;2(4):399 View
  14. Maharaj A, Holland J, Scarborough R, Evans S, Ioannou L, Brown W, Croagh D, Pilgrim C, Kench J, Lipton L, Leong T, McNeil J, Nikfarjam M, Aly A, Burton P, Cashin P, Chu J, Duong C, Evans P, Goldstein D, Haydon A, Hii M, Knowles B, Merrett N, Michael M, Neale R, Philip J, Porter I, Smith M, Spillane J, Tagkalidis P, Zalcberg J. The Upper Gastrointestinal Cancer Registry (UGICR): a clinical quality registry to monitor and improve care in upper gastrointestinal cancers. BMJ Open 2019;9(9):e031434 View
  15. Bernstein D, McIntyre A, Baumhauer J. Effect of assessment administration method and timing on patient‐reported outcome measures completion and scores: Overview and recommendations. Musculoskeletal Care 2020;18(4):535 View
  16. Althaus A, Chang P, Mao J, Olugbade K, Taylor K, Dewey L, Percy A, Crociani C, McNally K, Wagner A. Patient-Reported Quality of Life and Convalescence After Minimally Invasive Kidney Cancer Surgery. Urology 2020;144:123 View
  17. Thomas D, Fox S, Lorgelly P, Ashley D, Richardson G, Lipton L, Parisot J, Lucas M, McNeil J. Cancer 2015: a longitudinal whole-of-system study of genomic cancer medicine. Drug Discovery Today 2015;20(12):1429 View
  18. Absolom K, Gibson A, Velikova G. Engaging Patients and Clinicians in Online Reporting of Adverse Effects During Chemotherapy for Cancer. Medical Care 2019;57(Suppl 1):S59 View
  19. Wang K, Eftang C, Jakobsen R, Årøen A. Review of response rates over time in registry-based studies using patient-reported outcome measures. BMJ Open 2020;10(8):e030808 View
  20. Mlikotic R, Parker B, Rajapakshe R. Assessing the Effects of Participant Preference and Demographics in the Usage of Web-based Survey Questionnaires by Women Attending Screening Mammography in British Columbia. Journal of Medical Internet Research 2016;18(3):e70 View
  21. Martin N, Massey L, Stowell C, Bangma C, Briganti A, Bill-Axelson A, Blute M, Catto J, Chen R, D’Amico A, Feick G, Fitzpatrick J, Frank S, Froehner M, Frydenberg M, Glaser A, Graefen M, Hamstra D, Kibel A, Mendenhall N, Moretti K, Ramon J, Roos I, Sandler H, Sullivan F, Swanson D, Tewari A, Vickers A, Wiegel T, Huland H. Defining a Standard Set of Patient-centered Outcomes for Men with Localized Prostate Cancer. European Urology 2015;67(3):460 View
  22. Schick-Makaroff K, Molzahn A. Strategies to use tablet computers for collection of electronic patient-reported outcomes. Health and Quality of Life Outcomes 2015;13(1):2 View
  23. Allsop M, Johnson O, Taylor S, Hackett J, Allen P, Bennett M, Bewick B. Multidisciplinary Software Design for the Routine Monitoring and Assessment of Pain in Palliative Care Services: The Development of PainCheck. JCO Clinical Cancer Informatics 2019;(3):1 View
  24. Mak K, van Bommel A, Stowell C, Abrahm J, Baker M, Baldotto C, Baldwin D, Borthwick D, Carbone D, Chen A, Fox J, Haswell T, Koczywas M, Kozower B, Mehran R, Schramel F, Senan S, Stirling R, van Meerbeeck J, Wouters M, Peake M. Defining a standard set of patient-centred outcomes for lung cancer. European Respiratory Journal 2016;48(3):852 View
  25. Xue L, Williamson A, Gaines S, Andolfi C, Paul-Olson T, Neerukonda A, Steinhagen E, Smith R, Cannon L, Polite B, Umanskiy K, Hyman N. An Update on Colorectal Cancer. Current Problems in Surgery 2018;55(3):76 View
  26. Ala-Aldeen K, Stones N, Woolf D, Bayman N, Coote J, Harris M, Pemberton L, Sheikh H, Chan C, Hodgson C, Yorke J, Faivre-Finn C. The use of volunteers to implement electronic patient reported outcomes in lung cancer outpatient clinics. Technical Innovations & Patient Support in Radiation Oncology 2018;7:11 View
  27. Martin N, D'Amico A. Progress and controversies: Radiation therapy for prostate cancer. CA: A Cancer Journal for Clinicians 2014;64(6):389 View
  28. Marti J, Hall P, Hamilton P, Hulme C, Jones H, Velikova G, Ashley L, Wright P. The economic burden of cancer in the UK: a study of survivors treated with curative intent. Psycho-Oncology 2016;25(1):77 View
  29. Mamiya H, Lix L, Gardner W, Bartlett S, Ahmed S, Buckeridge D. Montreal Accord on Patient-Reported Outcomes (PROs) use series – Paper 5: patient-reported outcomes can be linked to epidemiologic measures to monitor populations and inform public health decisions. Journal of Clinical Epidemiology 2017;89:142 View
  30. van Velthoven M, Lam C, de Cock C, Stenfors T, Chaudhury H, Meinert E. Development of an Innovative Real-World Evidence Registry for the Herpes Simplex Virus: Case Study. JMIR Dermatology 2020;3(1):e16933 View
  31. Meyer L, Nick A, Shi Q, Wang X, Williams L, Brock T, Iniesta M, Rangel K, Lu K, Ramirez P. Perioperative trajectory of patient reported symptoms: A pilot study in gynecologic oncology patients. Gynecologic Oncology 2015;136(3):440 View
  32. Corsini N, Fish J, Ramsey I, Sharplin G, Flight I, Damarell R, Wiggins B, Wilson C, Roder D, Eckert M. Cancer survivorship monitoring systems for the collection of patient-reported outcomes: a systematic narrative review of international approaches. Journal of Cancer Survivorship 2017;11(4):486 View
  33. Ashley L, Smith A, Jones H, Velikova G, Wright P. Traditional and Rasch psychometric analyses of the Quality of Life in Adult Cancer Survivors (QLACS) questionnaire in shorter-term cancer survivors 15months post-diagnosis. Journal of Psychosomatic Research 2014;77(4):322 View
  34. Baili P, Torresani M, Agresti R, Rosito G, Daidone M, Veneroni S, Cavallo I, Funaro F, Giunco M, Turco A, Amash H, Scavo A, Minicozzi P, Bella F, Meneghini E, Sant M. A Breast Cancer Clinical Registry in An Italian Comprehensive Cancer Center: An Instrument for Descriptive, Clinical, and Experimental Research. Tumori Journal 2015;101(4):440 View
  35. Adogwa O, Elsamadicy A, Cheng J, Bagley C. Assessing Patient Reported Outcomes Measures via Phone Interviews Versus Patient Self-Survey in the Clinic: Are We Measuring the Same Thing?. World Neurosurgery 2016;87:230 View
  36. Ashley L, Marti J, Jones H, Velikova G, Wright P. Illness perceptions within 6 months of cancer diagnosis are an independent prospective predictor of health-related quality of life 15 months post-diagnosis. Psycho-Oncology 2015;24(11):1463 View
  37. Morton R, Lioufas N, Dansie K, Palmer S, Jose M, Raj R, Salmon A, Sypek M, Tong A, Ludlow M, Boudville N, McDonald S. Use of patient‐reported outcome measures and patient‐reported experience measures in renal units in Australia and New Zealand: A cross‐sectional survey study. Nephrology 2020;25(1):14 View
  38. Duschinsky R, Paddison C. “The final arbiter of everything”: a genealogy of concern with patient experience in Britain. Social Theory & Health 2018;16(1):94 View
  39. Gordon B, Chen R. Patient-reported outcomes in cancer survivorship. Acta Oncologica 2017;56(2):166 View
  40. Gupta A, Jain R, Wahi D, Goyal S, Jamal S, Grover A. Abrogation of AuroraA-TPX2 by novel natural inhibitors: molecular dynamics-based mechanistic analysis. Journal of Receptors and Signal Transduction 2015;35(6):626 View
  41. Smith T, Castro K, Troeschel A, Arora N, Lipscomb J, Jones S, Treiman K, Hobbs C, McCabe R, Clauser S. The rationale for patient‐reported outcomes surveillance in cancer and a reproducible method for achieving it. Cancer 2016;122(3):344 View
  42. Parker B, Rajapakshe R, Moldovan A, Araujo C, Crook J. An Internet-Based Means of Monitoring Quality of Life in Post-Prostate Radiation Treatment: A Prospective Cohort Study. JMIR Research Protocols 2015;4(3):e115 View
  43. Agarwal V, Corsini N, Eckert M, Sharplin G, Ramsey I, Gunn K, Fitzgerald M, Koczwara B. A pilot study of population-based, patient-reported outcome collection in cancer survivors. Supportive Care in Cancer 2021;29(8):4239 View
  44. Wintner L, Sztankay M, Riedl D, Rumpold G, Nickels A, Licht T, Holzner B. How to implement routine electronic patient‐reported outcome monitoring in oncology rehabilitation. International Journal of Clinical Practice 2021;75(4) View
  45. Kennedy F, Shearsmith L, Ayres M, Lindner O, Marston L, Pass A, Danson S, Velikova G. Online monitoring of patient self-reported adverse events in early phase clinical trials: Views from patients, clinicians, and trial staff. Clinical Trials 2021;18(2):168 View
  46. Franklin P, Lewallen D, Bozic K, Hallstrom B, Jiranek W, Ayers D. Implementation of Patient-Reported Outcome Measures in U.S. Total Joint Replacement Registries: Rationale, Status, and Plans. Journal of Bone and Joint Surgery 2014;96(Supplement_1):104 View
  47. Godden A, Micha A, Pitches C, Barry P, Krupa K, Rusby J. Development of an online research platform for use in a large-scale multicentre study. BJS Open 2021;5(1) View
  48. Araujo L, Baldotto C, Monteiro M, Aguiar P, Andrade M, Longo C, Batista M, Lima R, Azevedo D, Carvalho N, Andrade P, Zukin M, Teich N. Patient-Centered Outcomes in Non-Small-Cell Lung Cancer: A Real-World Perspective. Future Oncology 2021;17(14):1721 View
  49. Cho Y, Zhang H, Harris M, Gong Y, Smith E, Jiang Y. Acceptance and Use of Home-Based Electronic Symptom Self-Reporting Systems in Patients With Cancer: Systematic Review. Journal of Medical Internet Research 2021;23(3):e24638 View
  50. van der Veer S, Couchoud C, Morton R. The role of kidney registries in expediting large-scale collection of patient-reported outcome measures for people with chronic kidney disease. Clinical Kidney Journal 2021;14(6):1495 View
  51. TAYLAN S, ÖZKAN İ, EROĞLU N, KOLAÇ N. Kanserden Sağ Kalanlarda Erişkin Yaşam Kalitesi Ölçeğinin Türkçe Geçerlilik ve Güvenirliği. Kahramanmaraş Sütçü İmam Üniversitesi Tıp Fakültesi Dergisi 2022;17(1):84 View
  52. Suri S, Yoong D, Short D, Tan D, Naccarato M, Crane H, Musten A, Fredericksen R, Lober W, Gough K. Feasibility of implementing a same-day electronic screening tool for clinical assessment to measure patient-reported outcomes for eliciting actionable information on adherence to HIV medication and related factors in a busy Canadian urban HIV clinic. International Journal of STD & AIDS 2022;33(3):247 View
  53. Sundar S, Cummins C, Kumar S, Long J, Arora V, Balega J, Broadhead T, Duncan T, Edmondson R, Fotopoulou C, Glasspool R, Kolomainen D, Leeson S, Manchanda R, McNally O, Morrison J, Mukhopadhyay A, Paul J, Tidy J, Wood N. Quality of life from cytoreductive surgery in advanced ovarian cancer: Investigating the association between disease burden and surgical complexity in the international, prospective, SOCQER‐2 cohort study. BJOG: An International Journal of Obstetrics & Gynaecology 2022;129(7):1122 View
  54. Morris A, Ibrahim Z, Heslin M, Moghraby O, Stringaris A, Grant I, Zalewski L, Pritchard M, Stewart R, Hotopf M, Pickles A, Dobson R, Simonoff E, Downs J. Assessing the feasibility of a web‐based outcome measurement system in child and adolescent mental health services – myHealthE a randomised controlled feasibility pilot study. Child and Adolescent Mental Health 2023;28(1):128 View
  55. Velikova G, Absolom K, Hewison J, Holch P, Warrington L, Avery K, Richards H, Blazeby J, Dawkins B, Hulme C, Carter R, Glidewell L, Henry A, Franks K, Hall G, Davidson S, Henry K, Morris C, Conner M, McParland L, Walker K, Hudson E, Brown J. Electronic self-reporting of adverse events for patients undergoing cancer treatment: the eRAPID research programme including two RCTs. Programme Grants for Applied Research 2022;10(1):1 View
  56. Chen M, Jones C, Bauer H, Osakwe O, Ketheeswaran P, Baker J, Huang I. Barriers and Opportunities for Patient-Reported Outcome Implementation: A National Pediatrician Survey in the United States. Children 2022;9(2):185 View
  57. Riedl D, Lehmann J, Rothmund M, Dejaco D, Grote V, Fischer M, Rumpold G, Holzner B, Licht T. Usability of Electronic Patient-Reported Outcome Measures for Older Patients With Cancer: Secondary Analysis of Data from an Observational Single Center Study. Journal of Medical Internet Research 2023;25:e49476 View
  58. Salm H, Hentschel L, Eichler M, Pink D, Fuhrmann S, Kramer M, Reichardt P, Schuler M. Evaluation of electronic patient–reported outcome assessment in inpatient cancer care: a feasibility study. Supportive Care in Cancer 2023;31(10) View
  59. Morris A, Ibrahim Z, Moghraby O, Stringaris A, Grant I, Zalewski L, McClellan S, Moriarty G, Simonoff E, Dobson R, Downs J. Moving from development to implementation of digital innovations within the NHS: myHealthE, a remote monitoring system for tracking patient outcomes in child and adolescent mental health services. DIGITAL HEALTH 2023;9 View
  60. Unni E, Coles T, Lavallee D, Freel J, Roberts N, Absolom K. Patient adherence to patient-reported outcome measure (PROM) completion in clinical care: current understanding and future recommendations. Quality of Life Research 2024;33(1):281 View
  61. Silveira Bianchim M, Crane E, Jones A, Neukirchinger B, Roberts G, Mclaughlin L, Noyes J, Baradaran H. The implementation, use and impact of patient reported outcome measures in value-based healthcare programmes: A scoping review. PLOS ONE 2023;18(12):e0290976 View
  62. Pantiora E, Hedman L, Aristokleous I, Sjökvist O, Karakatsanis A, Schiza A. Effect of mode of delivery of patient reported outcomes in patients with breast disease: a randomised controlled trial. International Journal of Surgery 2024;110(1):176 View
  63. Taylor J, Wright P, Rossington H, Mara J, Glover A, West N, Morris E, Quirke P. Regional multidisciplinary team intervention programme to improve colorectal cancer outcomes: study protocol for the Yorkshire Cancer Research Bowel Cancer Improvement Programme (YCR BCIP). BMJ Open 2019;9(11):e030618 View

Books/Policy Documents

  1. Meiklem R, Stevenson K, Richarz S, Kingsmore D, Bouamrane M, Dunlop M, Thomson P. Human-Computer Interaction – INTERACT 2021. View
  2. Siembida E, Salsman J. Psychological Aspects of Cancer. View