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<p>The rapid digitalization of healthcare is transforming medical care strategies. Individuals carrying (likely) pathogenic <i>TP53</i> germline variants (P/LP <i>TP53</i>) require complex surveillance protocols. To support these individuals, we provided the adapted <i>PatientConcept</i> app to adults with a P/LP <i>TP53</i> variant and their relatives. We analyzed the value of this adapted app for this cohort, as well as general aspects of Internet use, web-based healthcare options, mental and physical health, and fear of progression. (FOP). From a larger study consisting of 70 carriers and 43 relatives, 25 affected individuals and no relatives installed the app. App users tended to be younger and physically fitter but reported higher levels of psychological distress and FOP compared to non-users. Users rated their distress as high and expressed interest in an on-demand intervention tool offering concise information sessions. Overall, users were satisfied with the app, finding it useful and easy to understand, though they identified areas for improvement. Many app features were underutilized, indicating a need for further adaptation to the target group. Most users obtained medical information online, considering it helpful but often unreliable and difficult to evaluate. Nevertheless, app users felt confident in their ability to use the Internet for health-related search. Our study demonstrates the feasibility and acceptance of an app for individuals with LFS, supporting their surveillance and health behaviors.</p>

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App supporting surveillance for (likely) pathogenic TP53 variant carriers: acceptance among a German cohort

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年1月10日

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  • Juliane Nees,
  • Senta Kiermeier,
  • Farina Silchmueller,
  • Myriam Keymling,
  • Christian P. Kratz,
  • Imad Maatouk,
  • Sarah Schott

摘要

The rapid digitalization of healthcare is transforming medical care strategies. Individuals carrying (likely) pathogenic TP53 germline variants (P/LP TP53) require complex surveillance protocols. To support these individuals, we provided the adapted PatientConcept app to adults with a P/LP TP53 variant and their relatives. We analyzed the value of this adapted app for this cohort, as well as general aspects of Internet use, web-based healthcare options, mental and physical health, and fear of progression. (FOP). From a larger study consisting of 70 carriers and 43 relatives, 25 affected individuals and no relatives installed the app. App users tended to be younger and physically fitter but reported higher levels of psychological distress and FOP compared to non-users. Users rated their distress as high and expressed interest in an on-demand intervention tool offering concise information sessions. Overall, users were satisfied with the app, finding it useful and easy to understand, though they identified areas for improvement. Many app features were underutilized, indicating a need for further adaptation to the target group. Most users obtained medical information online, considering it helpful but often unreliable and difficult to evaluate. Nevertheless, app users felt confident in their ability to use the Internet for health-related search. Our study demonstrates the feasibility and acceptance of an app for individuals with LFS, supporting their surveillance and health behaviors.