ESPN 50th Annual Meeting

ESPN 2017


 
Improvement of patient, parent / carer experience through high quality information: infoKID
JAN DUDLEY 1 ANDY LUNN 2 DAVID MILFORD 3 EILEEN BRENNAN 4 PAUL BRISTOW 5 LINDSEY HUNTER 6 MONA ASLAM 7

1- BRISTOL ROYAL HOSPITAL FOR CHILDREN
2- NOTTINGHAM UNIVERSITY HOSPITAL
3- BIRMINGHAM CHILDRENS HOSPITAL
4- GREAT ORMOND STREET HOSPITAL
5- BRITISH KIDNEY PATIENT ASSOCIATION
6- ROYAL COLLEGE OF PAEDIATRICS AND CHILD HEALTH
7- PETERBOROUGH CITY HOSPITAL
 
Introduction:

In March 2014, the infoKID website was launched providing quality-assured, evidence-based information for parents and carers of children with kidney conditions. Two years on, we undertook an evaluation of the resource to understand the potential for improving patient and family experience and opportunities for further development.

Material and methods:

We used Google Analytics to assess ‘hits’ on the infoKID website in the UK and worldwide. We held focus groups and clinic chats with 53 families and feedback from healthcare professionals to devise questionnaires that were piloted prior to developing the definitive surveys made available online in October 2016.

Results:

Between March 2014 and October 2016 there have been a total of 178,469 infoKID sessions, with a month-by-month increase in sessions worldwide (March 2014: 1771 sessions; October 2016: 8764 sessions). 79 patients, parents and carers (PPC) and 80 HCP participated in the surveys. Only 40% of PPC reported being familiar with the site, compared with 98% of HCP. The majority (86%) of PPC familiar with the site reported preferred times of accessing information at diagnosis and with changes in the condition. PPC familiar with the site reported that the information was easy to understand (93%), trustworthy (100%), increased their knowledge of kidney conditions (90%) and reduced concerns (55%). The majority (90%) of HCP reported signposting families to infoKID, either verbally in clinic (89%), through real-time demonstration of site (40%) and / or by including a link to the site on clinic letters (50%). Interestingly only 5% of PPC reported being made aware of the resource by clinic letters. 54% of HCPs reported that infoKID is a recommended resource for teaching and training within their Trust. Areas for development reported by both PPC and HCP included expanding the library of conditions and including patient stories and social fora.

Conclusions:

Improved knowledge and reduced concerns reported by PPC indicate that infoKID has the potential to improve patient experience. Healthcare professionals should be aware that optimal timing to signpost families to high quality information appears to be at the time of diagnosis or change in the condition.