Electronic Systems for Patients to Report and Manage Side Effects of Cancer Treatment: Systematic Review

Background: There has been a dramatic increase in the development of electronic systems to support cancer patients to report and manage side effects of treatment from home. Systems vary in features that they offer to patients which may impact on how patients engage with them, and subsequently on the benefit that may be derived in terms of patient centred outcomes.

Objectives: This review aimed to 1) Describe the features and functions of existing electronic symptom reporting systems (e.g. symptom monitoring, tailored self-management advice etc.), 2) Explore which features may be associated with patient engagement and patient-centred outcomes.

Method: The review was registered with PROSPERO and followed guidelines from the Centre for Reviews and Dissemination. Primary searches were undertaken of MEDLINE, EMBASE, PsychInfo, Web of Science, Cochrane Central Register of Controlled Trials and the Health Technology Assessment databases. Secondary searches were undertaken by screening reference lists and citations. Two researchers applied broad inclusion criteria to identify and select relevant records. Data was extracted and summarised using Microsoft Excel. In order to meet the aims, study selection, data extraction and data synthesis evolved into two stages. Stage 1: Identifying and characterising available systems and Stage 2: Summarising data on patient engagement and patient centred outcomes.

Results: 77 publications were identified relating to 41 distinct systems. Stage 1: All publications were included (n=77). Features identified which supported clinicians and care were: facility for health professionals to remotely access and monitor patient reported data (58%) and function to send alerts to health professionals for severe symptoms (41%). Features which supported patients were: facility for patients to monitor/review their symptom reports over time (e.g. graphs) (46%), general patient information about cancer treatment and side-effects (41%), tailored automated patient advice on symptom management (29%), feature for patients to communicate with the healthcare team (15%) and a forum for patients to communicate with one another (10%). Stage 2: Only publications which included some data on patient engagement and/or patient-centred outcomes were included (n=29). A lack of consistency between studies in how engagement was defined, measured or reported and a wide range of methods chosen to evaluate systems meant it was not possible to compare across studies or make conclusions on relationships with system features.

Conclusion: Electronic systems have the potential to support patients to manage side effects of cancer treatment with some evidence to suggest a positive effect on patient centred outcomes. However, comparison across studies is difficult due to the wide range of assessment tools used. There is a need to develop guidelines for assessing and reporting engagement with systems, and a set of core outcomes for evaluation. We hope that this review will contribute to the field by the introduction of a taxonomy for characterising system features.