Understanding paediatric cancer

Many patients feel the urge to understand what is happening to them. A wealth of information is available online; unfortunately, not all information is equally reliable and trustworthy. In this section, you will find support to find and access the right resources – in other words, evidence-based information.

Under all circumstances, your most important source of information must remain your health physician.

The aim of this page is to help you understand your disease and available treatments and foster deeper and richer discussions with your treating physician.

KickCancer does not take any responsibility for any treatment decision that you will make on the basis of the information mentioned on this website.

Trustworthy resources

Getting the best from Google

Naturally, most patients will google (or use another search engine) for additional information (even when told not to do so).

The web is equally full of good and anecdotal or even wrong information that can put the quality of the treatment of a patient in jeopardy. Some websites will even spare no efforts to appear like any other scientifically sound website in order to draw a commercial benefit from patients’ distress.

In this section, we want to equip you with a few tips and tricks to make sure that the information you find online is as trustworthy as possible:

  • Is the purpose of the website clear? (e.g. education, marketing of a product)
  • Who is responsible for the content of the website?
  • Does it represent an organisation that is well-known and respected?
  • Is the website from a reliable source, e.g. university, medical facility, government, company, society, etc.?
  • Is there evidence from published research articles to support the claims made?
  • Has it been recently updated?

You can always start from our list of suggested websites (link to page behind 1.2.1.)

Assistance through treatment

Our first concern as a patient or parent of a patient is to ensure that we receive the best treatment. However, most of us do not have the time, energy or knowledge to skim through the literature to discover all our options.

A team of scientists and physicians from the Anticancer Fund can provide you with curated scientific information to help you understand what information is relevant to you and make well-considered and informed decisions about your treatment.

MyCancerNavigator is a free service for cancer patients treated in Belgium.

Finding scientific publications

If you feel comfortable to dive into scientific publications, we provide you here with the most relevant websites and cues to assess the quality of the articles you will find.

Please note that the conclusions of some articles are difficult to interpret even for the specialists of the field.

You should always discuss the articles you find with your treating physician.

To find information, these sources are a great place to start:

  • PubMed
  • GoogleScholar
  • Medscape
  • Frontiers oncology
  • eCancer

To choose information that is relevant and useful:

  • The impact factor of an academic article reflects the yearly average number of citations that articles published in the last two years in a given journal received. This impact factor is usually regarded as a good means to assess the quality of a publication. However in rare diseases like paediatric cancers, it will usually remain really low because of the size of the scientific community.

To access information:

  • Free access to pay – walled paper via add-ons
  • Repositories such as Research Gate, Academia if you want to look up an individual person who works on your subject.
  • Email the authors or follow researchers on Twitter/LinkedIn.

I’m too small to cure, are you too big to care?