London, UK: Researchers are harnessing the powers of digital communications technology to help young cancer patients at home manage the side-effects caused by chemotherapy.

They have given the teenagers and young adults specially adapted mobile phones on which the patients can record and send details of all their symptoms to the medical professionals managing their care. The phones are capable of giving basic advice about the most common symptoms, and if the symptoms are serious enough, the phone triggers an alert at the hospital so that specially trained cancer nurses can ring the patient and, if necessary, ask him or her to come into hospital.

Dr Faith Gibson told Teenage Cancer Trust’s Fifth International Conference on Teenage and Young Adult Cancer Medicine today (Tuesday) that the Advanced Symptom Management System for Young People (ASyMS©-YG) seemed capable of transforming the way young people with cancer were cared for.

“Chemotherapy for cancer can cause many unpleasant, distressing and sometimes life-threatening side-effects, which can have a huge impact on a young person’s life,” said Dr Gibson, a senior lecturer in children’s cancer nursing research at the Institute of Child Health (London, UK). “The Advanced Symptom Management System for Young People that we are developing could revolutionise their care, giving them support and confidence in being able to manage their symptoms, as well as giving medical teams valuable information on a day-to-day basis about the way the patient has reacted to their treatment. I think this is a really exciting development and it could make a real difference in clinical care.”

The ASyMS©-YG [1] involves young people reporting their symptoms each day after having chemotherapy by completing a questionnaire on the mobile phone, which is similar to a PDA (personal digital assistant) or Blackberry. It has a touch screen and stylus. The questionnaire includes questions about how they are feeling, what their temperature is, what symptoms they have and it includes a body outline so that the patient can indicate where the pain is. The language used is teenage-friendly and the whole system has been developed with the help of young patients.

The symptom reports are sent to a central server and nurses at the hospital can view them on a web page. The patient can also view their symptoms on the phone in the form of graphs, which show how their symptoms have changed over time. Once they have reported symptoms, the young person automatically receives a text message giving them advice about what to do. In the latest phase of development, the patient can click on a button that immediately gives them advice about management of the most common symptoms such as constipation, diarrhoea, sickness etc. If the symptoms are severe or getting worse, a nurse is automatically paged to contact the patient at home to offer advice and support.

Dr Gibson said that during the first stages of development, young people were very positive about the system. “They could really see the benefits and really liked it. When we were recruiting for the phase three trial, the young people who were randomised not to receive the phone were disappointed that they would not be able to use it.” So far, it has been tested in teenagers aged 13-18 with lymphoma, soft tissue sarcoma and bone tumours, but the researchers hope to extend it to different groups, such as patients with leukaemia.

Teenagers said that it was useful because it gave them a record of their symptoms to talk about when they attended clinic: “Sometimes you may forget what symptoms you had three weeks ago,” said one. It also saved them from having to continuously repeat their symptoms to different people at different times, and it meant that the patients knew that the doctors and nurses knew exactly what they were going through.

Parents commented on the system’s potential to provide support and reassurance for families and the usefulness of having a record of symptoms. “I think this is a fantastic idea, it would give teenagers more control over their symptoms and what to do about them,” said a mother.

Medical professionals agreed with patients and parents and said they thought it would help to improve their knowledge and understanding about young people’s symptoms and that it could aid communication between the health professionals and patients. “It would give us a better understanding of what is actually happening when they are at home,” said one. Dr Gibson said: “Health professionals said that the system gave the young people some independence and control back into managing their own life.”

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The system has been funded up to this stage by Teenage Cancer Trust, with additional support from CLIC Sargent, and has just received further funding from Teenage Cancer Trust so that work can continue into the fourth stage involving 150 young people at six centres in the UK: the Royal Marsden and University College Hospital in London, the Christie Hospital (Manchester), St James’s Hospital (Leeds) and two more still to be confirmed. The study, with a new improved version of the system, is due to start in September and will run for 30 months. After that, Dr Gibson hopes that it will be rolled out across the country so that every young cancer patient can benefit from it.

Note:

[1] The intellectual property rights to ASyMS©-YG belong to the University of Stirling (UK).

Contact: Emma Mason
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Teenage Cancer Trust