A Prospective Patient Reported Outcomes and Wearables Study in MPN
Research type
Research Study
Full title
A Prospective Digital Monitoring Project Exploring Physical Activity, Patient Reported Outcome Measures and Disease Outcomes in Individuals with Myeloproliferative Neoplasms
IRAS ID
332286
Contact name
Patrick Harrington
Contact email
Sponsor organisation
Guy's & St Thomas' NHS Foundation Trust
Duration of Study in the UK
5 years, 0 months, 0 days
Research summary
The study aims to introduce a smart phone accessible application to allow long term tracking of patient reported outcomes such as symptom burden and biometric data and export relevant patient data to allow review by researchers.
Currently, monitoring of the patient journey with MPNs is limited, with many patients suffering from chronic and progressive symptom burden. Symptoms are often multifactorial, correlating with baseline clinical features, disease stage, complications, and therapies. As MPN symptoms are associated with perceived patient quality of life, disease progression, and the ultimate selection of therapies, their assessment becomes an important part of routine clinical evaluation. The MPN-10 tool assesses 10 of the most clinically relevant symptoms, including fatigue and generates a Total Symptom Score which can be tracked serially and allows monitoring of disease progression and efficacy of therapeutic interventions. There is a general lack of demographic data in MPN patients, and data that is available predominantly comes from clinical trials and large academic centres. As such this may be skewed and not represent the majority of patients who are treated in community centres and may not have access to the same range of therapies, subspecialist expertise and diagnostics.
Wearable technology and mobile applications provide the opportunity for regular patient monitoring. Moreover, digital innovations have the potential to inform on individual patient experiences and aggregate these findings to identify common themes in disease progression, management, and treatment. Digital web-based mobile-friendly tools which capture a host of information are currently being successfully implemented, however, the need to include patient reported outcomes is paramount as these offer the opportunity to increase patient participation with positive effects of outcomes and patient empowerment. This study aims to deliver important real-world evidence to accelerate clinical research across a range of healthcare settings.
REC name
London - London Bridge Research Ethics Committee
REC reference
23/PR/1061
Date of REC Opinion
31 Oct 2023
REC opinion
Further Information Favourable Opinion