Patient experiences of an electronic patient reported outcome tailored feedback tool for symptom management following upper gastrointestinal cancer surgery

Hollie S Richards*, Amanda G Portal, Kate Absolom, Jane M Blazeby, Galina Velikova, Kerry N L Avery

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)

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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.
Original languageEnglish
Number of pages11
JournalQuality of Life Research
Early online date13 Jun 2020
DOIs
Publication statusPublished - 13 Jun 2020

Keywords

  • Patient-reported outcomes
  • Qualitative
  • Surgery
  • Thematic analysis
  • Cancer
  • Electronic patient-reported outcomes

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