Related Experiment Video
Updated: Jan 8, 2026
Digital Home-Monitoring of Patients after Kidney Transplantation: The MACCS Platform
Published on: April 12, 2021
The NeST (Nephrotic Syndrome Trust) App, a novel, co-designed self-management support app for young people and young
Moin A Saleem1, Wendy Cook2, David Cook2
1University of Bristol, Bristol, UK.
Insights
Young people and young adults with Nephrotic Syndrome (NS) found the co-designed NeST app helpful and easy to use. This digital tool empowers users to manage their condition and data, with plans for future integration and broader application.
Area of Science:
- Digital Health
- Patient Empowerment
- Nephrology
Background:
- A significant need exists for a user-led, evidence-based digital application tailored to the information and support preferences of young people and young adults (aged 12-35) with Nephrotic Syndrome (NS) in the UK.
- The Nephrotic Syndrome Trust (NeST) app was co-designed with young patients (YP/YA) with NS to enhance their engagement with treatment, data management, and access to NS-related information.
- The app facilitates the recording of vital health data, including urine dipstick readings, blood pressure, weight, medications, symptoms, and treatment history, alongside an appointment diary and access to treatment information.
Purpose of the Study:
- To evaluate the NeST app from the perspective of young people and young adults with Nephrotic Syndrome.
- To gather user feedback for the refinement and future development of the NeST app.
- To assess the app's usability and helpfulness in managing Nephrotic Syndrome.
Main Methods:
- An online survey was developed through a consultative process, incorporating both closed and open-ended questions.
- The survey was distributed to target users of the NeST app via social media and email.
- Twenty young people and young adults with NS aged 12 years and older participated in testing the app and completing the survey.
Main Results:
- All 20 participants found the NeST app to be helpful and easy to use.
- Participants indicated a strong willingness to use the app in the future as part of their standard care.
- Quantitative and qualitative data were collected, providing valuable insights into user experience and app utility.
Conclusions:
- The study provides crucial feedback for the ongoing refinement of the NeST app.
- Future integration with national data collection systems, such as the UK Renal Registry (UKRR), is planned.
- The app's technology holds potential for adaptation to support patients with other kidney conditions, offering a scalable digital health solution.
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.
Related Concept Videos
01:24Nephrotic Syndrome III : Nursing Management
01:26Nephrotic Syndrome II : Assessment and Medical Management
01:24Nephrotic Syndrome I : Introduction
01:18Chronic Kidney Disease IV: Nursing Management
01:16Kidney Transplant III: Nursing Management
01:28Chronic Kidney Disease III: Interprofessional Care