Introduction
Do your cancer patients ever ask you about clinical trials?
If so, you could show them the CancerHelp UK clinical trials database (http://cancerhelp.cancerresearchuk.org/trials/trials-search/) which is part of the comprehensive patient information website of Cancer Research UK. This unique service was started over 10 years ago and provides information about UK cancer trials and studies, all in plain English, for ease of understanding. The service is not a route for recruitment, but can help doctors to discuss studies that may be available and help patients make a fully informed decision about their next steps. Since a redesign of the site in 2009, details now remain on the database after trials have closed to recruitment, and brief lay summaries of results are added when available.
By working with a wide range of trial teams, it has been possible to include a large number of studies on the site. Studies range from first-in-man trials of investigational drugs and early studies of new technologies, to studies looking at symptom control and management of treatment side effects. There are also studies looking at prevention, risks and causes, screening and diagnostic tests, but the focus of this article is on studies into controlling symptoms, managing treatment side effects, support and information. At the time of writing, there were more than 100 summaries of studies listed on the database in the areas of symptom control, treatment side effects, support and information.
Background
Following a review of the literature in 2010, White & Hardy [1] acknowledged the challenges of research in palliative care, but concluded that patients are interested in participating in research and may benefit from doing so. If patients (or their carers) want to find out more about research in general, or a specific study they may be aware of, it is important to be able to access appropriate information.
The NHS Constitution (2009) [2] pledges to ensure that patients from every part of the UK are made aware of research of particular relevance to them. Initiatives such as the UK Clinical Trials Gateway (http://www.ukctg.nihr.ac.uk/whatis.aspx) are helping the Government to meet this commitment, by providing access to a large number of trials in the UK. However, the information accessed via the UKCTG is from the ISCRTN register (http://www.controlled-trials.com/isrctn/) and ClinicalTrials.gov registers.
Unlike these registers, which contain trial registration datasets, the summaries on CancerHelp UK are written primarily for a lay audience. Patients and their carers can read about the aims of a study in language that is easy for them to follow. The functionality of the site also allows them to see where the study is taking place and to read about extra hospital visits that participation would entail. These can be particularly important issues for consideration in the palliative care setting, as patients may be fatigued or have co-morbidities, making travel more difficult for them.
Type of information
The information is useful for both health care professionals and people affected by cancer. It is written in a sensitive way with no assumptions made about knowledge of jargon. CancerHelp UK is accredited by the Information Standard which serves as a marker of quality for evidence based health and social care information.
The trial summaries are intentionally brief, but medical terms are explained and there are links from the trial summaries to supporting information on the website and to the site’s comprehensive glossary.
Every trial summary is approved by the team running the trial before going live on the site and the details of each open trial are regularly updated. So users can be confident that the content will be comprehensive, accurate and easy to understand.
All the entries on the database are written in house by the site’s team of specialist cancer nurses, all of whom have trained in the use of plain English. There are currently over 400 open trials listed. Each trial summary includes the aim of the trial, eligibility and exclusion criteria, trial design, information about hospital visits and side effects, a list of UK locations where the trial is taking place, the name of the Chief Investigator and details of organisations supporting the trial.
The database does not only include Cancer Research UK sponsored and funded trials. It has all types and phases of studies supported by a variety of organisations, including a growing number of pharmaceutical companies. Each month there are more than 25,000 page views of trial summaries.
Using the database
Many visitors to the database use the quick trials search (http://cancerhelp.cancerresearchuk.org/trials/) to find studies they may be interested in. This offers a drop down list of cancer types and a free text search box. Early and subsequent user testing of the trials database showed that cancer type was the main parameter that patients preferred to search on. There is also an advanced search (http://cancerhelp.cancerresearchuk.org/trials/AdvancedSearch/) offering additional drop down menus of trial types, treatment types, trial phases and location. Using this search, it is possible to find studies that are taking place in your local area looking at symptom control, management of treatment side effects or support and information.
Symptom control studies currently listed on the site include trials looking at relieving breathlessness, the treatment of bone and neuropathic pain, and the use of urokinase in pleurodesis, as well as a study looking at how breast cancer affects wellbeing and quality of life.
Trials classified as ‘support and information’ currently include a study looking at how people cope after a cancer diagnosis, a study to identify the needs of people living long term with cancer and a pilot study looking at a practical support programme for older people having chemotherapy.
Current trials looking at treatment side effects include studies looking at the effective management of side effects following radiotherapy to the bowel and a bowel management intervention following rectal cancer treatment, as well as studies looking at detecting and treating lymphoedema.
Links with other sources of information
It should be acknowledged that there are a number of websites where people may find information about trials taking place in the UK. The CancerHelp UK team have worked with other organisations to link between these sources to enable people to access information that is most appropriate for them. The UK Clinical Research Network Study Portfolio provides information about a large number of studies (including studies still in set up), but the information is not written specifically for a lay audience. For cancer studies that have opened to recruitment, the record usually includes a link to the plain English summary on CancerHelp UK as an option for patients to access. The CancerHelp UK team alert the Portfolio Administrator when a plain English summary is put on the site so that this link can be added straight away.
Another collaborative initiative has led to trials listed on the International Standard Randomised Controlled Trial Number register including details of a link to the lay summary on the CancerHelp UK trials database. It is also possible to enter an ISCRTN into the free text search box on CancerHelp UK, to search for the related plain English summary.
Conclusion
As well as the individual summaries of studies, the website includes general information about trials and research to help people understand more about different types of studies, how they are planned and run, and what taking part in a trial means. Cancer Research UK produces a popular leaflet about clinical trials, based on this information which includes details of how to access the clinical trials database. This can be downloaded or ordered free online (http://publications.cancerresearchuk.org/publicationformat/formatleaflet/trialsleaflet.html).
The CancerHelp UK clinical trials database offers an easily accessible way of finding information about current and closed cancer trials. The summaries can be useful for both patients who may be interested in taking part in research and for health care professionals. Studies looking at controlling symptoms, managing side effects, support and information are likely to be the most relevant in the palliative care setting.
References
1 White C, Hardy J. What do palliative care patients and their relatives think about research in palliative care? — a systematic review. Support Care Cancer 2010;18:905 -911
2 Department of Health. The Handbook to the NHS Constitution, London; DH Publications 2009:51
By Deborah Rodbard, Cancer Research UK.