Improvement of patient and parent / carer experience through high quality information: Results of the infoKID evaluation

Patient Education, Involvement and Experience
Improvement of patient and parent / carer experience through high quality information: Results of the infoKID evaluation
J. Dudley, on behalf of infoKID, M. Jordan, K. Paul, L. Hunter, A. Lunn, D. Milford, E. Brennan, paediatric nephrology, BRISTOL ROYAL HOSPITAL FOR CHILDREN, BRISTOL, Royal College of Paediatrics and Child Health, London, paediatric nephrology, Nottingham University Hospital, Nottingham, paediatric nephrology, Birmingham Children’s Hospital, Birmingham, paediatric nephrology, Great Ormond St Hospital, London, United Kingdom

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.
Objectives: Our objectives for the evaluation were to:
1. Review current website trends
2. Develop and promote surveys for patients, parents / carers (PPC) and health care professionals (HCP) to understand how the resource is signposted by HCP and used by both HCP and PPC
Methods: We used Google Analytics to assess sessions on the infoKID website in the UK and worldwide. We held focus groups and clinic chats with 53 families and gathered feedback from HCP to pilot and develop two questionnaires, which were made available online in October 2016.
Results: Between March 2014 and October 2016 there were 178,469 infoKID website visits, with a month-by-month increase worldwide (March 2014: 1771 visits; October 2016: 8764 visits). During October 2016 online surveys made available on the site were undertaken by 79 PPC and 80 HCP. Only 40% of PPC reported being familiar with the infoKID 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 forum.

Conclusion: Improved knowledge and reduced concerns reported by PPC indicate that infoKID has the potential to improve patient experience. HCP 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.

Disclosure of Interest: None Declared
Keywords: Clinical quality improvement

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