Research Programme 2 – Addressing Uncertainties in Cancer care

  • Systematic review of evidence.
  • Plain English Guides.


Systematic Reviews of evidence

Why are we conducting this project?

To summarise existing knowledge from primary research regarding the management of five main urological cancers: kidney, prostate, testicular, bladder and penile.

To provide a reliable evidence base for people living with urological cancers

How will these studies be carried out?

We liaise with clinical experts within and out-with Scotland to identify areas where knowledge about how urological cancers may be treated is lacking or unclear. We use this information to develop research questions. This includes, for example, the clinical effectiveness (benefits) and unwanted side-effects (harms) of various treatment options for localised prostate cancer. We will then address these questions using a particular type of research methodology called a ‘systematic review’.

Systematic reviews collect and summarise evidence from primary research (randomised controlled trials, for example) in a systematic, reproducible manner. Once the specific questions are identified, an information scientist conducts a comprehensive search to attempt to identify all primary research that has been done in these areas. The relevant primary studies are then assessed for pre-specified inclusion and exclusion criteria and their quality assessed independently by two reviewers. The rationale behind this rather lengthy process is to minimise the biases that can affect the results of any research.

The review findings might show that one drug prolongs people’s lives or delays the progression of disease by many more months or years on average than other treatments; or they may show that one type of surgical procedure is likely to result in less post-operative pain and a shorter hospital stay than another type of surgical procedure. Even if some of the research questions cannot be answered due to a lack of evidence, or the answer remains inconclusive, systematic reviews can still be useful in making statements about the current state of knowledge and recommendations for future research.

Why is this research important?

The ultimate aim for UCAN systematic reviews is to facilitate informed decision-making for patients and healthcare providers. This research is important because there are many thousands of articles on healthcare research published each year and yet, doctors and other healthcare decision makers may have limited time available to identify and evaluate all the latest research. Systematic reviews are a way to address this problem because they provide an accessible overview of the best available evidence of established and new treatment options. Doctors can then use this information to advise their patients of the best way forward in treating a particular cancer, or give them the facts about potentially beneficial and harmful effects of a specific treatment.

Who are we working with?

We consult NHS clinicians and representatives from the European Association of Urologists (EAU) and the British Association of Urological Surgeons (BAUS) for advice on clinical matters. Some of these clinicians work as part of the UCAN research team. We also work with academics from the University of Aberdeen who have specialist knowledge in conducting the various stages of the systematic review, such as information scientists, statisticians and experienced systematic review researchers.

When will this research take place?

The programme started in January 2009 and will run for the period of 5 years.

Funding Organisation

UCAN and MacMillan


Designing and providing plain English evidence based information for urological cancer patients: Plain English Guide Project


Why are we conducting this project?

With the growing access to the Internet and rising popularity of online health information sites, patients diagnosed with different types of urological cancer are often faced with a great amount of information on their condition. This information comes from diverse sources, both expert and lay, and has varying degrees of reliability. It is therefore very important to provide urological cancer patients with comprehensive information packages, based on the best research evidence presented in everyday language accessible to non-specialists.

Why is this research important?

Plain English Guides (PEG) project will serve the purpose by providing practical recommendations for creating and delivering such information packages, and by applying these recommendations for the design of a series of Plain English Guides for different urological cancers.

How will this project be carried out?

The project will be carried out in 3 stages.

In the first stage, we will review existing guidelines for the design and delivery of patient information in cancer and long-term illness. This review is currently under way.

In the second stage, we are carrying out a small study to look at how information is currently provided and what existing information materials are used. This study involves a group of newly diagnosed patients and follows them throughout their journey: from the initial referral, through diagnosis and treatment, to post-treatment assessment.

The researcher conducting the study, sit in and observe the appointments of this group of patients with urology and oncology doctors and nurses. Afterwards the researcher interviews patients, as well as doctors and nurses involved in their care.

In the third stage, we will use the results of the review and the study to write the recommendations and to create a series of Plain English Guides for different urological cancers. This work will be completed in September 2012.

When will this research take place?

The study is ongoing and run until September 2011.

Funding organisation

PEG project is funded by UCAN charity through the Big Lottery Fund.

For further information please contact Dr Karolina Kazimierczak