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Table 2 Changes made to the website

From: Communicating cancer treatment information using the Web: utilizing the patient’s perspective in website development

Website section

Prototype website

Final website

About the disease

Information about the incidence of lung cancer in the Netherlands.

We added two web sources with information for patients:

- Cancer in the Netherlands, trend and prognoses

- Integral Cancer Centre, The Netherlands

What is cancer?

Description of cell division and how lung cancer occurs.

We added an information video titled: “What is cancer”. http://www.youtube.com/watch?feature=player_embedded&v=L2uF0qk1jck

What is lung cancer?

Non-small cell lung cancer and small-cell lung cancer are mentioned. Furthermore, the different stages are explained.

We added information about the two types of lung cancer and explained the differences more thoroughly:

“Small cell lung cancer is a fast growing type of lung cancer. It spreads more quickly to the lymph nodes, and is therefore almost always treated with chemotherapy or a combination of chemotherapy and radiotherapy. Patients with small cell lung cancer are not candidates for stereotactic ablative radiotherapy”.

“Non-small cell lung cancer is the most common sub-type of lung cancer. It usually grows and spreads more slowly than small-cell lung cancer”.

Which treatment options do I have?

Description of the different treatment options for an early stage lung cancer (surgery and stereotactic ablative radiotherapy) and information about the importance of a good condition.

- We added information about the importance of being in a good condition. - We mentioned that the condition is tested, for example by a bicycle-test, to provide some meaning to the term ‘good condition’.

What is stereotactic ablative radiotherapy?

Description of stereotactic ablative radiotherapy (precision radiation etc) and the treatment process.

- We added information about both stereotactic ablative radiotherapy and conventional radiotherapy. A table was added so that patients could easily see differences between these two radiation approaches.

- We revised the text and described the treatment itself more thoroughly, with added information about the treatment team (radiotherapist etc).

- We added an information video titled: “What is stereotactic ablative radiotherapy”. http://www.youtube.com/watch?feature=player_embedded&v=kdrJsyl5EPg

What happens during treatment?

Description of the radiation preparation, including a 4D-CT scan, drawing marks on the body, x-rays being made etc.

- We added about a 4D-CT scans, including an information video titled: “4D-CT scan and radiation”.

- We added information about the radiation preparation and added two new photographs of marks/lines drawn on the body surface to assist in positioning.

-Also added was a section with information about radiation delivery, and described the whole process from arriving at the hospital until going home after treatment.

Results

Description of the results of SABR treatment

- We revised this information for easier understanding by patients: “Until now, this way of radiotherapy is particularly done within patients who were not a candidate to undergo surgery. This could be because they were not fit enough. In such patients, good results have been achieved, and the likelihood of being cured is the same as when a patient undergoes an operation. As a result of these good results, stereotactic radiotherapy is increasingly used in patients who are a candidate to undergo surgery, but who declined to undergo surgery. Reasons for the latter included an aversion to possible side-effects of surgery, or because of a patients preference for stereotactic radiotherapy”.

- We added references to different studies which had been performed using stereotactic ablative radiotherapy.

Side-effects

The different side-effects are mentioned as follows: Some patients experience:

- We extended information about the potential side-effects. For example:

Some discomfort lying in the machine: The couch of the machine has a hard surface, which can make it uncomfortable for patients.

• Some discomfort lying in the machine

Fatigue: Many patients experience tiredness, which may partly be due to travelling to and from the hospital. To minimize this, patients should plan for a less hectic schedule during treatment.

• Fatigue

• Painful ribs after treatment

 

Etc.

Risk information was provided as follows: “During the treatment itself hardly any side effects occur. Less than 5% of all patients experience these side effects”

The information on risks was presented differently: “At the very most, 1 out of the 20 patients who undergo this treatment, will have side-effects”.

More information

This section provides information when patients still have some questions about stereotactic radiotherapy after reading the information on the website. Patients are advised to contact their physician.

- We added information about obtaining a second opinion, and included a link to a website with information about these second opinions.

-We added an information video, titled: “Conversation with your doctor”. http://www.youtube.com/watch?feature=player_embedded&v=6Tlb36jni64

Information for relatives

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-A new section was added to cater to the information needs of relatives.

-We added an information video titled: “Relatives of cancer patients”. http://www.youtube.com/watch?feature=player_embedded&v=75btAnXrq6A

Frequently asked questions

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We added a new section with frequently asked questions during interviews, e.g.:

“Could the additional x-rays performed be bad for one’s health?”

“Does the treatment hurt?”

“Do I remain radioactive following the treatment?”

About this website

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- A new section was added with information about the aims of the website.

- We added website links and references.