Development of a mobile application-based system for recording pain and supporting pain management in patients with cancer

Pain is one of the most common symptoms experienced by patients with cancer at all stages of the disease. It is estimated that 32% of patients who experience pain do not receive effective treatment. Many cancer patients with increasing survival rates, most of them living in the community with inadequate support, continue to experience an accumulating symptoms burden and deterioration of function. Poor cancer pain management is a multifactorial issue attributed to numerous contributing factors including insufficient pain assessment and patient-related cognitive and communication barriers. The complex and dynamic nature of cancer pain adds unique challenges to pain classification and management, presenting a pressing need for high-quality descriptive research to define optimal management approaches. Collecting pain data, however, is challenging. The widespread use of mobile phones, along with people’s attachment to their phones, has made mobile health (mHealth) approaches an innovative and timely method for remotely delivering health interventions and collecting health data. Evidence shows that mHealth applications (apps) development is an emerging area of research. mHealth interventions have been increasingly explored in the context of various chronic health conditions, showing acceptability and encouraging results, but very little attention has been given to investigating these approaches in the field of pain management in cancer patients. As an attempt to fill this gap, this thesis presents the design, development, and early testing of a complex mHealth based intervention, the Pain Recording System, to support better pain management for UK-based adult cancer patients living in the community. The system sought to both support pain self-management and facilitate routine reporting of pain data to healthcare professionals (HCPs) and researchers. The thesis adopted the United Kingdom Medical Research Council (UK MRC) guidelines with the integration of the User-Centred Design (UCD) framework. The integrated approach enabled a systematic and iterative development and built the system to be underpinned by evidence and theory and informed by potential users, who are patients, HCPs, and researchers. Early testing showed that the developed system is feasible and acceptable and that potential users can see the benefits they may reap from it in relation to both practice of and research into pain management in patients with cancer. Importantly, the thesis concluded that there is a potential for mHealth interventions to be effective in optimising pain management for cancer patients. Further exploration, however, is necessary to provide conclusive evidence in relation to the system’s usability and acceptability, as well as to establish suitable approaches to implementation in the context of home-based palliative care.