Warrington, Lorraine M. (2018) Routine self-reporting of symptoms and side effects during cancer treatment: The patient’s perspective. PhD thesis, University of Leeds.
Abstract
Introduction
There has been a dramatic increase in web-based systems developed to support patients to report/manage cancer treatment side effects (ePROM systems). However, little is known about processes underpinning patient engagement and impact on experience.
Aims
To explore the patient perspective on using ePROM systems during chemotherapy.
Mixed methods
Preliminary work
Interviews (n=87) and questionnaires (n=40) explored patient experience of chemotherapy and indicated that difficulty deciding when to seek medical support during treatment was common. Field usability testing of eRAPID (n=12) indicated potential to support patients but variable engagement. A systematic review of ePROM systems (n=41) indicated a scarcity of robust evidence with few RCTs, with patient engagement and psychosocial outcomes such as self-efficacy not routinely explored or assessed.
Main studies
Qualitative and quantitative evaluation of patient engagement/experience was integrated into an RCT to evaluate eRAPID (n=354). Engagement was evaluated by weekly symptom reports and use of website. Validated measures assessed impact of eRAPID on self-efficacy to manage side effects (CSES) and cope with cancer (CBI-B), and patient activation (PAM). Relationships between outcomes and engagement were explored. A subset of patients were interviewed (n=23) to explore patient engagement/experience. Triangulation techniques were used to compare and contrast findings.
Results
Engagement was generally high with few barriers to use reported. One of the main motivators for sustained patient engagement was providing information to clinicians for use in consultations. Patients reported eRAPID provided psychological benefits and improved care.
There was a positive impact of eRAPID on CSES (p=.015) but not CBI-B or PAM. Engagement was a significant predictor of improvement in CSES (p<.001) and CBI-B (p<.01) but not PAM.
Conclusion
ePROM systems have potential to improve patients experience of chemotherapy. Further exploration using qualitative and quantitative assessments is needed to provide insights into motivators and barriers. Clinician engagement is intertwined with patient engagement and requires ongoing assessment to inform future development and implementation.
Metadata
Supervisors: | Velikova, Galina and Absolom, Kate and Conner, Mark and Kellar, Ian |
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Keywords: | PROMs, ePROMs, oncology, patient centred, self-efficacy |
Awarding institution: | University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > Institute of Molecular Medicine (LIMM) (Leeds) |
Identification Number/EthosID: | uk.bl.ethos.770046 |
Depositing User: | Ms Lorraine Warrington |
Date Deposited: | 13 Mar 2019 14:14 |
Last Modified: | 11 May 2021 09:53 |
Open Archives Initiative ID (OAI ID): | oai:etheses.whiterose.ac.uk:23013 |
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