Patients and Carers

What is the purpose of this study?

Palliative care doctors and nurses are experts in treating symptoms from an illness, rather than the illness itself. Palliative Care is not just about the late stages of terminal illness any more. We would like to know if involving palliative care specialists early in the treatment of mesothelioma improves the quality of life and wellbeing of patients.  We are also interested in how this specialist treatment might affect the wellbeing of family or close friends, closest to patients with this illness. 

I'm a patient - what will happen to me if I take part?

You will receive all normal treatment and support for your illness. In addition, some patients will be chosen at random, to also receive treatment and support from the palliative care specialists. This specialist care will be from within a few weeks of getting the diagnosis of your illness (even if you don't have any troublesome symptoms - usually this type of support is offered in the final few months of life). If you are offered this early additional support, you will have an initial consultation with the palliative care team (lasting approximately 1 hour). This will be followed by regular monthly reviews (lasting approximately 30 minutes) for the duration of your illness. This support is for you as the patient and your carer who is helping you during your illness. You will also receive all the other usual treatment that can be offered. If you are selected for the usual NHS treatments, all the normal treatments and support will be offered. No treatment will be withheld from you at any time and if a referral to the palliative care team is required, this will happen straight away.

What happens if I'm in the standard treatment group? Do

I miss out?

You will get the same treatment as everybody else who is not in this study. Most patients are referred to the palliative care team at some point in their illness. If needed, you will get all the extra treatment and support you and your carer need, at any time. We will ask you to answer the same questions that the other group do. There will be no other extra visits or appointments in this group.

But isn't Palliative Care just about helping the dying?

No. Palliative Care provides physical (symptoms), emotional (stress, worry) and spiritual (not religious) support for patients and families that can be at any time during an illness. We would like to know if involving these specialists much earlier than usual makes a difference for patients and carers.

What will my carer be asked to do?

If you are selected to receive early palliative treatment and support, we would like your main carer to join you for the extra visits. We will also ask them to answer similar questions to you at the same times (the start of the study and 3 months and 6 months after this). If you are in the standard treatment group we simply ask that they complete the questionnaires at the same time as you (the start of the study and 3 months and 6 months after this). Should any patients pass away during the study, we would also like see if the treatment and support offered during their illness makes a difference to carers afterwards. We know that this will be an upsetting time for everyone concerned. We would contact them by letter 6 months after and see if they still wish to take part with another questionnaire. This will be the same for all carers, in either treatment group. They will be free to decline if they wish. In this study there is a 50% chance of being in the early palliative support group, or standard treatment. This is the same as tossing a coin.

What is

mesothelioma?

Malignant mesothelioma is a rare cancer of the lining of the chest commonly caused by exposure to asbestos. This exposure may have occurred up to forty years earlier. Mesothelioma usually causes symptoms like breathlessness, loss of weight and chest pain, but it can affect people in different ways. There is no cure for mesothelioma. This study seeks to learn how best we can support patients with mesothelioma and their families.
A study to learn more about treating malignant mesothelioma - can we improve quality of life?
Copyright Respect Meso Steering Group 2016 Site by Ailsa Brims

Downloads

(All the downloads below are PDF files) Frequently Asked Questions Patient information sheet Carer information sheet Patient consent sheet Carer consent sheet Carer GP Letter Study protocol Invitation to participate Poster

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