A study looking at a new advice and information system to help people with cancer or recovering from cancer in their working lives (Scot-PAIS)

Please note - this trial is no longer recruiting patients. We hope to add results when they are available.

Cancer type:

Bladder cancer
Kidney cancer
Prostate cancer
Renal cell carcinoma

Status:

Closed

Phase:

Other

This study aims to develop a new advice and information system to help people living with cancer or recovering from cancer in their working lives. It is recruiting people with

More about this trial

People living with cancer, or recovering from a diagnosis of cancer often see a return to work as part of returning to normal life and getting better. If work is not possible, the financial effects can be significant. It can also affect a person's self-esteem, leading to feelings of stress and depression.

The researchers want to develop an advice and information system to help people in this situation. They will involve people affected by cancer, health and care professionals and key staff from employing organisations throughout this process.

The researchers hope that this system will enable people affected by cancer to manage their working lives. The study may also provide useful information to healthcare providers and key staff from employing organisations (line managers, human resources staff and occupational health professionals).

Who can enter

You may be able to join this study if you have been diagnosed with 1 of the following in the last 5 years

As well as the above, all of the following must apply. You

  • Were working at the time of your diagnosis
  • Can speak English
  • Are able to use a computer

You cannot join this study if any of these apply. You

  • Have any other serious medical condition or mental health problem that the study team think could affect you taking part
  • Have had any other type of cancer before

Trial design

This study includes 3 different parts. You cannot volunteer to take in this study, people are asked to take part by their doctor.

The researchers need about 10 people from the Grampian region in Scotland to join the first part. You take part in a focus group (with a small number of other people recovering from cancer) or you have a one to one interview with one of the researchers. This can be face to face or over the phone if you prefer. The researcher will ask you about your experiences of work following your cancer diagnosis. They will audio-record the conversation. This part of the study is called Scottish conversations.

When you have completed your interview or taken part in a focus group, the study team may ask you to join the 2nd part looking at an online survey. This is called the Delphi exercise. The study team are looking for up to 60 people across Scotland to join this part of the study (20 people with bladder cancer, 20 people with prostate cancer and 20 people with kidney cancer).

Everyone taking part will complete up to 4 online surveys. If you do not have a computer, the study team can arrange for you to have access to a computer, for example at a nearby Macmillan information centre.

Your first online survey will ask you to give your opinion on various aspects of your working life following your diagnosis of cancer. It will ask you for your thoughts on the proposed information and advice system, such as what you think it should include. It will also ask how and when you think the information and advice system should be offered to patients and who should be responsible for doing this.

The information you give during the first survey will be used to shape questions for the next survey and so on. The researchers will also ask some healthcare professionals and key staff from employing organisations to join parts 1 and 2.

After you have done these surveys, you may be asked to join the 3rd part.

In the 3rd part of the study you will attend one of 3 feasibility workshops. Each workshop will include about 20 people who are either people recovering from cancer, healthcare providers or key staff from employing organisations.

The research team will guide you through the proposed information and advice system (known as Scot-PAIS) and they will take notes on what you think.

The researchers will treat everything you tell them as confidential Open a glossary item, so no one will be able to link the results to you.

Hospital visits

You can choose to have your interview or take part in a focus group at the Aberdeen Royal Infirmary or the University of Aberdeen.  Or you can choose to have your interview by telephone. Either way, this will take about 1 -1 ½ hours.

You fill in the online surveys at home or somewhere else which allows you to access a computer. Each survey takes about 20 minutes to do and they will be a few months apart

Your feasibility workshop will take place in your local area and it will last for about 3 to 4 hours.

Side effects

This study does not involve a treatment, so there are no side effects. Talking about your experiences may be upsetting. The study team will do all they can to support you. You can take a break when you want and they can arrange for you to speak with the specialist nurse if you want to.

Recruitment start:

Recruitment end:

How to join a clinical trial

Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Chief Investigator

Dr Sara J MacLennan

Supported by

Birkbeck, University of London
Macmillan Cancer Support
UCAN (Urological Cancer Charity)
University of Aberdeen

Questions about cancer? Contact our information nurses

Freephone 0808 800 4040

Last review date

CRUK internal database number:

Oracle 12877

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Cara took part in a clinical trial

A picture of Cara

"I am glad that taking part in a trial might help others on their own cancer journey.”

Last reviewed:

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