OBJECTIVES

The aim of this study was to record melanoma symptoms in the real-world setting in order to understand patients’ experience of living with melanoma and the value of reporting symptoms via a mobile app.

METHODS

Patients completed the EQ-5D-5L, EORTC QLQ-C30 and a melanoma-focused subset of the PRO-CTCAE using the study app on their mobile devices (“bring your own device” [BYOD] technology). Development of the app was informed by feedback from patients and the patient advocacy group Melanoma UK. Patients with any type or stage of melanoma are being recruited in collaboration with Melanoma UK. Informed consent is obtained via the study app, and ethics approval has been obtained. Quantitative data collected through the app include demographics, symptoms, adverse events, frequency of access to the app and regularity of reporting. A post-launch survey assessed the value of the BYOD-recorded data at medical consultation and in reducing anxiety relating to recall-based pain reporting and the burden of recalling over extended periods.

RESULTS

Data collected using the app confirm that symptom burden increases with disease progression. The burden of symptom reporting is significantly reduced using the app compared with verbal recall. Patients liked the flexibility and immediacy of reporting using the app, and in particular the level of detail in the questions. Having access to data reported over an extended period that can be shared during medical consultations, rather than relying on verbal recall, was valued, and reduced participants’ anxiety in recalling pain.

CONCLUSIONS

Technology that allows patients to record symptoms and adverse effects in real time in the real-world setting has benefits to patients. Instant access to accurate and granular symptom data in almost real time allows clinicians to improve treatment and care and will be of interest to stakeholders considering treatment options.