Abstract
PurposeComplications 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.MethodsPatients 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.ResultsThirty-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.ConclusionPatients 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.
Highlights
Recovery from upper gastrointestinal (UGI) cancer surgery is associated with distressing and difficult symptoms that can occur for up to six months after hospital discharge [1,2,3]
Research suggests that patients find it difficult to obtain symptom management advice once they are at home [18]
As part of the eRAPID project we have developed a novel electronic patient-reported outcome symptom-report and feedback system to improve recovery in patients who have been discharged from hospital following UGI cancerrelated surgery
Summary
Recovery from upper gastrointestinal (UGI) cancer surgery is associated with distressing and difficult symptoms that can occur for up to six months after hospital discharge [1,2,3]. Up to 50% of patients experience complications within one month of surgery [3,4,5], frequently after they have left hospital [6, 7]. Patients are increasingly being discharged from hospital earlier following surgery, with an increased emphasis on recovery at home [13, 14]. Quality of Life Research (2021) 30:3229–3239 be feasible and safe [15, 16], patients’ symptoms are not usually routinely monitored post-discharge [17]. Incomplete understanding of patterns of recovery after discharge can cause patients to experience uncertainty and concern about how to recognise and respond to symptoms [13]. For example, that patients often report feelings of confusion and abandonment following discharge [20]
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