Priority 2 from the Living With and Beyond Cancer PSP

UNCERTAINTY: How can patient and carers be appropriately informed of cancer diagnosis, treatment, progosis, long-term side-effects and late effects of treatments, and how does this affect their treatment choices? (JLA PSP Priority 2)
Overall ranking	2
JLA question ID	0073/2
Explanatory note	Not available for this PSP
Evidence	None identified
Health Research Classification System category	Cancer

Extra information provided by this PSP
Original uncertainty examples	Over forty years ago I had radiotherapy for testicular cancer, and no one mentioned Radiation-Induced Lumbrosacral Plexopathy. I am lead to believe that even today this is still the case. Why? ~ If you were/or had been aware of the possible long term effects of treatment, would you still have accepted treatment? ~ I also have arthritis, it's been brought on by the chemo, as a side effect it was not mentioned at the start of my diagnosis, will more explanation on treatments be disclosed to patients at the start of treatments?
Submitted by	Individual survey submissions categorised by Healthcare professional, Patient, Relative/Carer, Other, and Unknown. For full details of the type of submitter for each individual question, please see the spreadsheet of data held on the JLA website.

Extra information provided by this PSP

Original uncertainty examples

Over forty years ago I had radiotherapy for testicular cancer, and no one mentioned Radiation-Induced Lumbrosacral Plexopathy. I am lead to believe that even today this is still the case. Why? ~ If you were/or had been aware of the possible long term effects of treatment, would you still have accepted treatment? ~ I also have arthritis, it's been brought on by the chemo, as a side effect it was not mentioned at the start of my diagnosis, will more explanation on treatments be disclosed to patients at the start of treatments?

Submitted by

Individual survey submissions categorised by Healthcare professional, Patient, Relative/Carer, Other, and Unknown. For full details of the type of submitter for each individual question, please see the spreadsheet of data held on the JLA website.

PSP information
PSP unique ID	0073
PSP name	Living With and Beyond Cancer
Total number of uncertainties identified by this PSP.	54 (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop	11 June 2018