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

Routine self-reporting of symptoms and side effects during cancer treatment: The patient’s perspective

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