Section of Patient Centred Outcomes Research
- Group summary: Our section focuses its research in several areas, with the common aim of using Patient Reported Outcome Measures (PROMS) to improve quality of life and patient-centred care.
What we do
Our section brings together investigators with interests in three main areas:
1. The Patient Reported Outcomes Group (POG), led by Galina Velikova, undertakes applied research aimed at improving cancer patients' quality of life. The group focuses on the development and assessment of online PROMS systems to allow patients to self-report adverse events and symptoms where data is available in electronic patient records to assist patient care.
2. The Psychosocial Research Group (PSRG), led by Penny Wright is involved with a number of projects linking Patient Reported Outcome data with routinely collected clinical data from cancer registries and electronic patient records. Penny is interested in the social impact of illness and how to measure this using Patient Reported Outcomes. This includes assessment of the quality of life of carers of people living with dementia.
3. The Teenagers and Young Adults Group (TYA), led by Daniel Stark, carries out health services research focusing on the application of clinical informatics to the challenges of cancer in teenagers and young adults and survivorship. Dan also has interests and active research studies including research grants in the provision of care for people with cancer and mental health problems, teenagers and young adults with cancer, clinical trials that integrate patient-reported outcomes measures and the biology of germ cell tumours.
As a group we have played an instrumental role in the development of an electronic tool for collecting PRO data. This questionnaire management system is called QTool and was developed by X-Lab for the University of Leeds and is owned by the University. If you would like more information about QTool, please visit our website or email Deborah Allon D.Allon@leeds.ac.uk (QTool Business Development Manager).
A number of our current studies involve developing and evaluating web-based systems to collect PROMs from patients, link these data with clinical and cancer registration data and to provide timely relevant information for patients, based in part, on real-time collection of PROMs data.
Here is a list of some of our current larger studies. Details of individual research projects can also be viewed on our website.
A 5 year, multi-centred NIHR programme grant to develop and evaluate an electronic system for patient self-reports to aid safer delivery and monitoring of cancer treatments, known as eRAPID: Electronic patient self-Reporting of Adverse-events: Patient Information and advice.
A 4 year YCR programme to remotely follow-up ovarian cancer patients following initial treatment,, using electronic Patient Reported Outcome Measures (ePROMs) and re-designed care pathways.
A 3 year YCR programme assessing the quality of life of early stage lung cancer patients treated with surgery or modern stereotactic radiotherapy.
Quality of Life Metric
A 2 year NHS England project tracking quality of life for cancer patients to improve care and support for people once treatment ends. The new ‘quality of life’ metric will be made available on My NHS – helping patients, the public, clinicians and health service providers see how well their local after cancer care support is doing.
A 3 year MRC and NIHR funded project developing a quality of life questionnaire for carers looking after someone with dementia.
Professor Galina Velikova, Professor of Psychosocial and Medical Oncology
Dr Penny Wright, Associate Professor
Dr Dan Stark, Associate Professor
Dr Alex Gilbert, Clinical Scientist
Andrea Gibson, Research Sister
Beverly Clayton, Senior Research Nurse
Dr Cecilia Pompili, Thoracic Surgeon and Research Fellow
Christopher Bedding, PhD Student
Deborah Allon, QTool Service Development Manager
Dr Elizabeth Stamp, Research Assistant
Emma Nicklin, PhD Student
Dr Fiona Kennedy, Research Fellow
Dr Florien Boele, University Academic Fellow
Jeremy Dwyer, Data and IT Support Officer
Dr Kate Absolom, University Academic Fellow
Kathleen Kane, PhD student
Leanne Shearsmith, Research Assistant
Lorraine Warrington, Research Assistant
Marie Holmes, Research Assistant
Robert Carter, IT Manager
Dr Rose Peacock, Research Fellow
Sam Mason, Research Assistant
Sarah Dickinson, Project Manager
Dr Sarah Gelcich, Research Fellow
Zoe Rogers, Research Assistant
Please visit staff member’s pages to view their publications as the following list is not regularly updated.
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, Volume 28, Issue 9, 1 September 2017, Pages 2305–2311. Available in PubMed and https://doi.org/10.1093/annonc/mdx317
Absolom K, Holch P, Warrington L, Samy F, Hulme C, Hewison J, Morris C, Bamforth L, Conner M, Brown J, Velikova G and on behalf of the eRAPID systemic treatment work group. Electronic patient self-Reporting of Adverse-events: Patient Information and aDvice (eRAPID): a randomised controlled trial in systemic cancer treatment. BMC Cancer 2017 May 8th:17 (1):318. doi: 10.1186/s12885-017-3303-8. PubMed PMID: 28482877; PubMed Central PMCID: PMC5421322. https://bmccancer.biomedcentral.com/articles/10.1186/s12885-017-3303-8
Holch P, Henry A, Davidson S, Gilbert A, Routledge J, Shearsmith L, Franks K, Ingleson E, Albutt A, Velikova G. Acute and Late Adverse Events Associated With Radical Radiation Therapy Prostate Cancer Treatment: A Systematic Review of Clinician and Patient Toxicity Reporting in Randomized Controlled Trials. nt J Radiation Oncol Biol Phys, Vol. 97, No. 3, pp. 495-510, 2017 http://www.redjournal.org/article/S0360-3016(16)33430-7/fulltext?rss=yes
Warrington L, Holch P, Kenyon L, Hector C, Kozlowska K, Kenny AM, Ziegler L, Velikova G. An audit of acute oncology services: patient experiences of admission procedures and staff utilisation of a new telephone triage system. Support Care Cancer. 2016 Dec;24(12):5041-5048. PubMed 27540738
Gilbert A, Ziegler L, Martland M, Davidson S, Efficace F, Sebag-Montefiore D, Velikova G. Systematic Review of Radiation Therapy Toxicity Reporting in Randomized Controlled Trials of Rectal Cancer: A Comparison of Patient-Reported Outcomes and Clinician Toxicity Reporting. Int J Radiat Oncol Biol Phys. 2015 Jul 1;92(3):555-567.
Warrington L, Absolom K, Velikova G. Integrated care pathways for cancer survivors - a role for patient-reported outcome measures and health informatics. Acta Oncol. 2015 May;54(5):600-8. doi: 10.3109/0284186X.2014.995778. Epub 2015 Mar 9.
Santana MJ, Haverman L, Absolom K, Takeuchi E, Feeny D, Grootenhuis M, Velikova G. Training clinicians in how to use patient-reported outcome measures in routine clinical practice. Qual Life Res. 2015 Jul;24(7):1707-18. doi:10.1007/s11136-014-0903-5. Epub 2015 Jan 15.
Ashley L, Jones H, Thomas J, Newsham A, Downing A, Morris E, Brown J, Velikova G, Forman D, Wright P. Integrating patient reported outcomes with clinical cancer registry data: a feasibility study of the electronic
Patient-Reported Outcomes From Cancer Survivors (ePOCS) system. J Med Internet Res. 2013 Oct 25;15(10):e230. doi: 10.2196/jmir.2764
Warrington, L, Absolom, K, Conner, M et al. (Accepted: 2018) A systematic review of online systems for patients to report and manage the side effects of cancer treatment. Journal of Medical Internet Research. ISSN 1439-4456 (In Press) http://eprints.whiterose.ac.uk/137024/
Holch P, Pini S, Henry AM, Davidson S, Routledge J, Brown J, Absolom K, Gilbert A, Franks K, Hulme C, Morris C, Velikova G. 2018. eRAPID electronic patient self-Reporting of Adverse-events: Patient Information and aDvice: a pilot study protocol in pelvic radiotherapy. Pilot and Feasibility Studies. https://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-018-0304-6
We have received grant funding from a wide range of funders, including Cancer Research UK, NIHR (National Institute for Health Research) Yorkshire Cancer Research, the Medical Research Council, EORTC (European Organisation for Research and Treatment of Cancer), Breast Cancer Now, Ellie’s fund and NHS England.