Priority 8 from the Autosomal Dominant Polycystic Kidney Disease Project

UNCERTAINTY: When people are newly diagnosed with ADPKD, how does this affect them psychologically and what impact does it have on their life? What information and support would help people at this time? (Priority 8)
Overall ranking	8
JLA question ID	0103/8
Explanatory note	Not available for this PSP
Evidence	No evidence identified
Health Research Classification System category	Renal and urogenital

Extra information provided by this project
Original uncertainty examples	Development of an appropriately sensitive ADPKD specific questionnaire for assessing how ADPKD affects quality of life (QOL) including the physical and psychological stresses of living with the disease? ~ What are the best strategies to inform people with ADPKD that they have the disease? ~ What are the most relevant and effective educational programs and tools for ADPKD to support people with the disease? ~ What is the psychological impact of diagnosis of ADPKD at an early age? ~ How can peer-to-peer support networks and youth counsellors best support children and adolescents with ADPKD? ~ What are the best communication tools to support children and adolescents with ADPKD? ~ What is the impact of psychological factors including anxiety and depressions on people with ADPKD, and what methods are best to measure and manage these factors? ~ Development of validated tools and / or strategies to measure the psychological impact of ADPKD.
Submitted by	Autosomal Dominant Polycystic Kidney Disease (ADPKD): Report from a Kidney Disease Improving Global Outcomes (KDIGO) Controversies Conference (.PDF)

Extra information provided by this project

Original uncertainty examples

Development of an appropriately sensitive ADPKD specific questionnaire for assessing how ADPKD affects quality of life (QOL) including the physical and psychological stresses of living with the disease? ~ What are the best strategies to inform people with ADPKD that they have the disease? ~ What are the most relevant and effective educational programs and tools for ADPKD to support people with the disease? ~ What is the psychological impact of diagnosis of ADPKD at an early age? ~ How can peer-to-peer support networks and youth counsellors best support children and adolescents with ADPKD? ~ What are the best communication tools to support children and adolescents with ADPKD? ~ What is the impact of psychological factors including anxiety and depressions on people with ADPKD, and what methods are best to measure and manage these factors? ~ Development of validated tools and / or strategies to measure the psychological impact of ADPKD.

Submitted by

Autosomal Dominant Polycystic Kidney Disease (ADPKD): Report from a Kidney Disease Improving Global Outcomes (KDIGO) Controversies Conference (.PDF)

Project information
Project unique ID	0103
Project name	Autosomal Dominant Polycystic Kidney Disease
Total number of uncertainties identified by this project.	35 (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop	15 December 2020