Priority 9 from the Teenage and Young Adult Cancer PSP

UNCERTAINTY: What is the best method of follow-up and timing which causes the least psychological and physical harm, while ensuring relapse/complications are detected early? (JLA PSP Priority 9)
Overall ranking 9
JLA question ID 0060/9
Explanatory note Young people treated for cancer are at risk of late‐effects. These can vary from physical health effects, such as second primary tumours, cardiovascular disease, effects on fertility and growth to educational, behavioural and social problems. Relatively little is known about the long‐term consequences of treatment and the need for long‐term surveillance has been identified in order to better characterise the late‐effects specific to this group. There remains a lack of consensus regarding the optimal methods and timing of follow-up. Young people and families describe anxiety about waiting for scan results as well as worry about the physical effects of scans. 

1) Cochrane review protocol: Beverley Lim Høeg , Pernille Envold Bidstrup , Trine Allerslev Horsboel , Susanne Oksbjerg Dalton , Lena Saltbæk , Randi Valbjørn Karlsen , Klaus Kaae Andersen and Christoffer Johansen (2016) Follow-up strategies following completion of primary cancer treatment in adult cancer survivors ; 2) Heirs M, Suekarran S, Slack R, Light K, Gibson F, Glaser A, Hawkins M, Phillips R. A systematic review of models of care for the follow‐up of childhood cancer survivors. Pediatric Blood and Cancer. 2013;60(3):351‐356.  

The review protocol/review are not young person-focused. Review concluded more robust evidence is needed.

Health Research Classification System category Cancer
Extra information provided by this PSP
Original uncertainty examples How important are the check ups every 3 months? ~ What is the balance between scans for reassurance and the damage they might do?
Submitted by 1 x patients ~ 1 x parent/carers 
PSP information
PSP unique ID 0060
PSP name Teenage and Young Adult Cancer
Total number of uncertainties identified by this PSP. 185  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 19 January 2018