DESIGNING DIGITAL TECHNOLOGY TO ADDRESS THE NEEDS OF LYMPHOMA SURVIVORS USING MIXED RESEARCH METHODS

Abstract

Rates of both cancer incidence and successful treatment are causing a rapid increase in the cancer survivorship population. In particular, many people with Hodgkin's lymphoma or diffuse large B-cell lymphoma are successfully treated and their risk of recurrence is low. However, treatment is often aggressive and can cause long-term side effects. The research presented in this dissertation investigates whether digital technology could be used to manage the long-term follow-up of these patients. To do this, I first statistically analysed the existing long-term condition burden of lymphoma survivors in primary care electronic health records, assessing how this differs from the general population, and how well people on open follow-up adhere to their recommended care plan. I then qualitatively studied the subjective needs of lymphoma survivors and their attitudes towards the use of digital technology to meet those needs, using semi-structured interviews and thematic analysis. Finally, I took a user-centred design approach to identify and prioritize features of a theoretical future digital intervention designed for lymphoma survivors, using online workshops and virtual whiteboards. I found that survivors; care plans are either not always adhered to, or adherence is not well recorded in the primary care record, and in addition that there are significant differences between the long-term condition burden of cancer survivors and the general population. I also found that there was broadly positive sentiment towards the use of digital technology amongst survivors, that the Covid-19 pandemic has increased survivors' acceptance of technology, including amongst older people, and that acceptance was largely predicted by existing technology acceptance models. The exception to this is the importance of data privacy and security, which is not traditionally included as a construct in technology acceptance models but is important for healthcare. Finally, I found that access to the late effect management plan was of the highest priority for lymphoma survivors, and that it is vital that users of the app know whether data they themselves enter into the app will be seen by a clinician, because they might assume their data has been seen and, therefore, they do not need to report it elsewhere.

Date of Award	24 May 2024
Original language	English
Awarding Institution	The University of Manchester
Supervisor	Sudeh Cheraghi-Sohi (Co Supervisor), Benjamin Brown (Co Supervisor) & Niels Peek (Main Supervisor)