Priority from the Teenage and Young Adult Cancer PSP

UNCERTAINTY: For young people with incurable cancer, how should healthcare professionals communicate with them to improve quality of life and patient experience?
Overall ranking This was one of the 20 questions at the workshop that fell outside of the Top 10. These were not ranked in any order of priority
JLA question ID 0060/27
Explanatory note This question is complex, it is a very emotional time, requiring excellent communication and listening skills. How information is received is so individual. We do not know what works best for young people, our only evidence comes from those working with adult patients. 

1) Murray CD, McDonald C, Atkin H. The communication experiences of patients with palliative care needs: a systematic review and meta‐synthesis of qualitative findings. Palliative and Supportive Care. 2015;13(2):369-83. 

2) Barnes S, Gardiner C, Gott M, Payne S, Chady B, Small N, Seamark D, Halpin D. Enhancing patient‐professional communication about end‐of‐life issues in life‐limiting conditions: a critical review of the literature. Journal of Pain and Symptom Management. 2012;44(6):866‐879. 

3) Fawole OA, Dy SM, Wilson RF, Lau BD, Martinez KA, Apostol CC, Vollenweider D, Bass EB, Aslakson RA. A systematic review of communication quality improvement interventions for patients with advanced and serious illness. Journal of General Internal Medicine. 2013;28(4):570‐577. 

1) Focuses on communication with other people e.g. family, not just with health care professionals. Not focused on cancer although many of studies included participants with cancer. 2) Not young people-focused. Review concludes: there is a clear need for further research to lead to the evidence-based development and rigorous evaluation of communication interventions. 3) Most interventions addressed adult mixed-illness populations, predominantly in an intensive care unit setting, and focused either on improvements in family meetings or better utilisation of palliative care consultations.

Health Research Classification System category Cancer
Extra information provided by this PSP
Original uncertainty examples What is best practice for discussing palliative care options with young adults and at what point in treatment should these conversations begin? ~ What are the most effective ways of discussing future treatment support options when cure is no longer possible? 
Submitted by 1 x partner ~ 1 x relative ~ 2 x professional
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