A novel model and infrastructure for clinical outcomes data collection and their systematic evaluation for UK patients receiving proton beam therapy
Burnet, Neil G
Crellin, A. M.
Thwaites, D. I.
Chang, Y. C.
AffiliationThe Christie Proton Beam Therapy Centre, The Christie NHS Foundation Trust, Manchester, UK
MetadataShow full item record
AbstractAims: To establish an infrastructure for sustainable, comprehensive data collection and systematic outcomes evaluation for UK patients receiving proton beam therapy (PBT). Materials and methods: A Proton Outcomes Working Group was formed in 2014 to develop a national minimum dataset for PBT patients and to define a clinically integrated informatics solution for data collection. The Christie Proton Beam Therapy Centre formed its Proton Clinical Outcomes Unit in 2018 to collect, curate and analyse outcomes data prospectively for UK-treated patients and retrospectively for UK patients referred abroad for PBT since 2008 via the Proton Overseas Programme (POP). Results: A single electronic form (eForm) was developed to capture the agreed data, using a data tree approach including conditional logic: data items are requested once, further questions depend on previous answers and are sensitive to tumour site and patient pathway time point. Relevant data automatically populate other forms, saving time, prompting completeness of clinical assessments and ensuring data consistency. Completed eForm data populate the electronic patient record and generate individualised outputs, including consultation letters, treatment summary and surveillance plans, based on organs at risk irradiated, age and sex. All data regarding POP-treated patients are verified and migrated into the system, ensuring that patient data, whether overseas or UK treated, are consistently recorded. The eForm utilises a 'user friendly' web portal interface, the Clinical Web Portal, including clickable tables and infographics. Data items are coded to a universally recognised standard comparable with other data systems. Patient-reported outcomes are also integrated, highlighting significant toxicities and prompting a response. Outcomes data can be correlated with dosimetric DICOM data to support radiation dose modelling. Conclusion: Outcomes data from both POP-treated and The Christie-treated patients support long-term care, allow evaluation of PBT efficacy and safety, assist future selection of PBT patients and support hypothesis generation for future clinical trials.
CitationHwang E, Burnet NG, Crellin AM, Ahern V, Thwaites DI, Gaito S, et al. A Novel Model and Infrastructure for Clinical Outcomes Data Collection and Their Systematic Evaluation for UK Patients Receiving Proton Beam Therapy. Clinical Oncology. Elsevier BV; 2021.
- Outcomes of Patients Treated in the UK Proton Overseas Programme: Central Nervous System Group.
- Authors: Gaito S, Hwang EJ, France A, Aznar MC, Burnet N, Crellin A, Holtzman AL, Indelicato DJ, Timmerman B, Whitfield GA, Smith E
- Issue date: 2023 May
- Outcomes of Patients Treated in the UK Proton Overseas Programme: Non-central Nervous System Group.
- Authors: Hwang E, Gaito S, France A, Crellin AM, Thwaites DI, Ahern V, Indelicato D, Timmermann B, Smith E
- Issue date: 2023 May
- Folic acid supplementation and malaria susceptibility and severity among people taking antifolate antimalarial drugs in endemic areas.
- Authors: Crider K, Williams J, Qi YP, Gutman J, Yeung L, Mai C, Finkelstain J, Mehta S, Pons-Duran C, Menéndez C, Moraleda C, Rogers L, Daniels K, Green P
- Issue date: 2022 Feb 1
- Adjuvant Proton Beam Therapy in the Management of Thymoma: A Dosimetric Comparison and Acute Toxicities.
- Authors: Parikh RR, Rhome R, Hug E, Tsai H, Cahlon O, Chon B, Goenka A
- Issue date: 2016 Sep
- The Promise of Proton Beam Therapy for Oesophageal Cancer: A Systematic Review of Dosimetric and Clinical Outcomes.
- Authors: Nicholas O, Prosser S, Mortensen HR, Radhakrishna G, Hawkins MA, Gwynne SH
- Issue date: 2021 Aug