The Maria Watt Foundation supports and funds organisations responsible for researching cancer in children, teenagers and young adults. Take a look at some of the projects below.
The last national clinical trial for children with ALL, UKALL2003, introduced the ground-breaking minimal residual disease (MRD) test, which was developed by Leukaemia & Lymphoma Research’s scientists in Bristol, with more than £3 million funding from the charity.
The MRD test is a molecular test that can predict how well children will respond to treatment and allows doctors to tailor chemotherapy to the needs of each child. This means that many children, who can be cured with low intensity treatment, are spared the gruelling side effects of chemotherapy. Children who are at greater risk of relapsing are given intensive treatment early on, increasing their chances of being cured.
The test has been so successful that the NHS is now paying for every child diagnosed with ALL in the UK to be given this vital test.
The Maria Watt Foundation has sponsored 10 further clinical trials of MRD research in an effort to improve this further. Our investment has been given to Dr Sarah Lawson at Birmingham Children’s Hospital who, with support from Dr Julie Irving at the University of Newcastle, is developing a new type of MRD test that is quicker, cheaper and easier to administer, but just as effective. This test uses a technique called flow cytometry to identify leukaemia cells in the blood, rather than the molecular techniques used in the current MRD test.
Young people undergoing treatment for cancer experience accompanying physical side-effects and ‘being tired’ and ‘unable to get around’ causes them significant distress. They consider the physical side effects of treatment as the worst aspect of the disease, significantly affecting their quality of life. Few studies have addressed the measurement of physical symptoms in young people with cancer. However, research has been hindered by the limited number of symptom assessment instruments validated in this population. Tools developed to date have tended to concentrate upon the measurement of single symptoms such as nausea, vomiting and fatigue, or focused upon young people receiving particular treatments such as a bone marrow transplant. The shortage of appropriate, rapid and efficient tools available to comprehensively measure symptoms has resulted in the epidemiology of symptoms in young people remaining poorly characterised with few symptom intervention trials being undertaken. In addition, a meaning-centred approach, in which researchers seek to understand young people’s experiences as they are lived, is missing. Consequently, a complete picture of the cancer symptom trajectory in young people is lacking.
Information and communication technologies have opened up new possibilities in the field of health care. Mobile phone technology provides a creative medium for the development of a system to monitor and support young people receiving chemotherapy. The team at the University of Stirling (now the University of Dundee) have led on this development in adult cancer care. They have developed and evaluated a personal digital assistant (PDA) based advanced symptom management system (ASyMS©) to remote monitor chemotherapy related toxicity. These systems offer creative ways for health professionals to expand upon and deliver patient-centred care. The system stores real-or near-real time information on patients’ symptom experiences, and has the potential to improve the accuracy and completeness of reporting, increase health professionals understanding of patients’ symptom experience, influence the effectiveness of symptom management strategies, and may ultimately improve the cost-effectiveness of healthcare.
Early development work on ASyMS-YG involved: consulting with young people regarding which symptoms should be assessed on the PDA questionnaire (Phase 1); young people using the PDA to send their symptom data, and finding out the young people’s, parents’ and health professionals’ perceptions of the system (Phase 2), developing a ‘risk modelling’ system and self-care guidelines, and conducting a pilot study to test the system and study design of the final stage (Phase 3)
The top five symptoms selected were mouth sores, vomiting, weight loss, nausea and diarrhoea. These symptoms formed the basis of the phone questionnaire with software developed by Kelvin Connect Ltd.