Priority 20 from the Living With and Beyond Cancer PSP

UNCERTAINTY: How do the support needs of people with rare and less common cancers differ from people with more common cancers, and how are those needs best met?(JLA PSP Priority 20)
Overall ranking 20
JLA question ID 0073/20
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 How do survival needs of rare disease patients differ from more common diseases. With my interest in sarcoma I would highlight:a) multilating surgery - amputation, facial reconstruction b) endoprosthetics, especially in those originally treated as children/teenagers c) those on daily medication - imatinib for GIST, where we have 16 years survival ~ How can sufferers from rare cancers be given adequate support?
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