Abstract
Purpose
Complications following upper gastrointestinal (UGI) surgery are common. Symptom-monitoring following discharge is not standardized. An electronic patient-reported outcome (ePRO) system providing feedback to patients and clinicians could support patients and improve outcomes. Little is known about patients’ experiences of using such systems. This qualitative sub-study explored patients’ perspectives of the benefits of using a novel ePRO system, developed as part of the mixed methods eRAPID pilot study, to support recovery following discharge after UGI surgery.
Methods
Patients completed the online ePRO symptom-report system post-discharge. Weekly interviews explored patients’ experiences of using ePRO, the acceptability of feedback generated and its value for supporting their recovery. Interviews were audio-recorded and targeted transcriptions were thematically analysed.
Results
Thirty-five interviews with 16 participants (11 men, mean age 63 years) were analysed. Two main themes were identified: (1) reassurance and (2) empowerment. Feelings of isolation were common; many patients felt uninformed regarding their expectations of recovery and whether their symptoms warranted clinical investigation. Participants were reassured by tailored feedback advising them to contact their care team, alleviating their anxiety. Patients reported feeling empowered by the ePRO system and in control of their symptoms and recovery.
Conclusion
Patients recovering at home following major cancer surgery regarded electronic symptom-monitoring and feedback as acceptable and beneficial. Patients perceived that the system enhanced information provision and provided a direct link to their care team. Patients felt that the system provided reassurance at a time of uncertainty and isolation, enabling them to feel in control of their symptoms and recovery.
Complications following upper gastrointestinal (UGI) surgery are common. Symptom-monitoring following discharge is not standardized. An electronic patient-reported outcome (ePRO) system providing feedback to patients and clinicians could support patients and improve outcomes. Little is known about patients’ experiences of using such systems. This qualitative sub-study explored patients’ perspectives of the benefits of using a novel ePRO system, developed as part of the mixed methods eRAPID pilot study, to support recovery following discharge after UGI surgery.
Methods
Patients completed the online ePRO symptom-report system post-discharge. Weekly interviews explored patients’ experiences of using ePRO, the acceptability of feedback generated and its value for supporting their recovery. Interviews were audio-recorded and targeted transcriptions were thematically analysed.
Results
Thirty-five interviews with 16 participants (11 men, mean age 63 years) were analysed. Two main themes were identified: (1) reassurance and (2) empowerment. Feelings of isolation were common; many patients felt uninformed regarding their expectations of recovery and whether their symptoms warranted clinical investigation. Participants were reassured by tailored feedback advising them to contact their care team, alleviating their anxiety. Patients reported feeling empowered by the ePRO system and in control of their symptoms and recovery.
Conclusion
Patients recovering at home following major cancer surgery regarded electronic symptom-monitoring and feedback as acceptable and beneficial. Patients perceived that the system enhanced information provision and provided a direct link to their care team. Patients felt that the system provided reassurance at a time of uncertainty and isolation, enabling them to feel in control of their symptoms and recovery.
| Original language | English |
|---|---|
| Number of pages | 11 |
| Journal | Quality of Life Research |
| Early online date | 13 Jun 2020 |
| DOIs | |
| Publication status | Published - 13 Jun 2020 |
Bibliographical note
Funding Information:This report is independent research funded by the National Institute for Health Research (Programme Grants for Applied Health research, Towards safer delivery and monitoring of cancer treatments. Electronic patient self-Reporting of Adverse events: Patient Information and aDvice (eRAPID) RP-PG-0611-20008). This work was undertaken with the support of the Medical Research Council ConDuCT-II (Collaboration and innovation for Difficult and Complex randomised controlled Trials In Invasive procedures) Hub for Trials Methodology Research (MR/K025643/1) ( https://www.bristol.ac.uk/social-community-medicine/centres /conduct2/), Royal College of Surgeons of England Bristol Surgical Trials Centre and National Institute for Health Research (NIHR) Biomedical Research Centre (BRC) at the University Hospitals Bristol NHS Foundation Trust and the University of Bristol. JMB holds an NIHR Senior Investigator award. The views expressed in this publication are those of the author(s) and not necessarily those of the National Institute for Health Research, Department of Health and Social Care or MRC. Acknowledgements
Publisher Copyright:
© 2020, The Author(s).
Keywords
- Patient-reported outcomes
- Qualitative
- Surgery
- Thematic analysis
- Cancer
- Electronic patient-reported outcomes
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