The NeST (Nephrotic Syndrome Trust) App, a novel, co-designed self-management support app for young people and young adults with Nephrotic Syndrome: a multi-method survey reporting initial app development and evaluation

Background

There is a need for a user-led, evidence-based digital application (app.) that meets the identified information and support needs and preferences of young people and young adults aged 12–35 years (YP/YA) with Nephrotic Syndrome (NS) in the United Kingdom (UK). The password protected novel Nephrotic Syndrome Trust (NeST) app was therefore co-designed with YP/YA with NS to empower them to: access news of NS related events, take more control of their treatment and feel confident in sharing and accessing their data. The app allows YP/YA with NS to record regular urine dipstick readings, blood pressure, weight, temperature, medications, immunisations, symptoms (e.g. swollen feet), relapse or remission episodes, and the name of their renal unit. Additional features include an appointment diary to record feedback from their renal multidisciplinary team, treatment information and hospital admission episodes. The software was approved for release on iOS & Android app stores and the NHS Digital verification programme, meaning that users can be identified against their NHS records. The aim of the survey was to evaluate the NeST App from the perspective of YP/YA with NS.

Methods

Through a consultative process, an online survey involving a combination of closed and open-ended questions was created and circulated via social media and email to target users of the app.

Results

Twenty YP/YA with NS aged 12 years and older tested the app, completed the survey and provided quantitative and qualitative data. All found this app helpful, and easy to use and all would use it in future as part of standard practice.

Conclusions

These data provide important feedback and suggestions for further app refinement and will integrate it with current national data collection via the UK Renal Registry (UKRR). To build on this collaborative project the developers will continue to collaborate with patients and health care professionals to ensure the app is a continually evolving and relevant resource, providing a voice for those living with NS. The app technology could potentially be rebooted and relaunched at minimal cost to support patients with other kidney conditions.

Clinical trial number

Not applicable.