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. 2025 Dec 15;27(1):52.
doi: 10.1186/s12882-025-04684-1.

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

Moin A Saleem  1 , Wendy Cook  2 , David Cook  2 , Reihaneh Damghani  2 , Maryam Afzal  3 , Retha Steenkamp  4 , Steve Donovan  5 , Veronica Swallow  6
Affiliations

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

Moin A Saleem et al. BMC Nephrol. .

Abstract

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.

Keywords: Multi-methods survey; NeST app; Nephrotic Syndrome; Qualitative; Quantitative; Young people and young adults.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: The study was conducted in accordance with the Declaration of Helsinki and was approved by the Research Ethics Committee in the Faculty of Health Science (FREC), University of Bristol (Ref:12086). Completion of the survey indicated assumed assent or consent; parents of young people under 16 years were asked to agree to their child’s participation in the survey. Anonymity was maintained as no identifiable information was collected from respondents. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Example of a question in the survey
See this image and copyright information in PMC

References

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