Digital technology has an important role in the monitoring and management of long term conditions. The purpose of this study was to evaluate the feasibility of using PROMS to monitor symptoms, via a disease specific mobile application. Secondary endpoints included QoL and patient engagement. In addition, we reviewed the total number of symptoms reports and time required for patients to complete and submit these.
Methods: Unmet patient needs were identified through patient workshops. In addition, a steering group identified the clinical requirements, leading to the inclusion of demographics, clinical information, medications, therapies plus a symptom tracker and quality of life questionnaires in the product specification. The app includes links to educational and self-management resources provided by NPF, including NPF handbook, video and other online resources. The app was hosted on the App store (for both Android and Apple). The app was available for download by patients within the UK. Patients at six NETS Centres were invited to participate in a formal study to assess patient utilisation and demand. Clinical teams could contact patients and accumulate data for research used a CE-marked clinical portal.
Results: Over two years to June 2023, a total of 710 individuals registered to use the app, across at least 58 hospital sites. 54% were female and 46% male. Most users did not record DOB. Most common primary sites recorded are small bowel, pancreas and gastric. 320 individual users completed 672 PROMS (EORTC-C30 and/or GI-NET 21), on average each user completed 2.1 QOL questionnaires. 90% of users used the app between 1 and 10 times. 31,787 symptoms were recorded by 220 patients an average of 145 symptom reports per patient. Use of the app remained steady throughout the period, with an average of 143 monthly logins but churn increased over time, perhaps resulting from the lack of a clinical feedback loop;
Conclusions: Patient engagement is good using a bespoke NET mobile app, but could be improved with greater clinical engagement and deeper integration into health records. There was excellent recording of symptoms and QOL data and high uptake of both within and outside the study cohort.