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Accepted for/Published in: JMIR Formative Research

Date Submitted: Apr 1, 2023
Date Accepted: May 16, 2024

The final, peer-reviewed published version of this preprint can be found here:

Interactive Health Technology Tool for Kidney Living Donor Assessment to Standardize the Informed Consent Process: Usability and Qualitative Content Analysis

Ortiz F, Grasberg J, Ekstrand A, Helanterä I, Giunti G

Interactive Health Technology Tool for Kidney Living Donor Assessment to Standardize the Informed Consent Process: Usability and Qualitative Content Analysis

JMIR Form Res 2024;8:e47785

DOI: 10.2196/47785

PMID: 38981119

PMCID: 11267092

Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.

Usability of interactive health technology for kidney living donor assessment: a valuable tool for standardizing the informed consent process

  • Fernanda Ortiz; 
  • Juulia Grasberg; 
  • Agneta Ekstrand; 
  • Ilkka Helanterä; 
  • Guido Giunti

ABSTRACT

Background:

Kidney living donation is not a risk-free procedure. Information about the process, risks of nephrectomy, and psychological impact should be given to every candidate, but this practice is not standardized.

Objective:

We aimed to evaluate the utility of new interactive health technology as a new tool to improving the informed consent process in kidney living donation.

Methods:

This cross-sectional survey study involves all living kidney donor candidates (LD) from Helsinki University Hospital (N=127) from Jan 2019 to Jan 2022. All candidates were invited to use the open institutional portal Health Village-Kidney hub, and the patient-tailored digital care path (LD-dcp), which includes information about the donation process and facilitates communication between clinicians, transplant coordinators, and patients. Participants’ eHealth literacy was evaluated with the eHEALS query, usability with the system usability score (SUS), and system utility was assessed with three 5-point Likert scale surveys. Demographics and socioeconomic data were included. An open-ended question was examined with qualitative content analysis.

Results:

The Kidney hub was accessed on average by 8000 visitors monthly mostly from a smartphone (60%), 71 % were females, and 25% were aged over 65. Seven out of 127 LD candidates did not use the LD-dcp. Users´ age ranged from 20 to 79 years. Over 3500 messages were exchanged. Fifty-eight percent of all kidney donor candidates consented to participate in the survey. The mean e-HEALS was 3,77. Search on the internet about kidney donation was significantly more common in females than males (84 % vs 55 %, p= 0.038), and was unrelated to education level (0.475), working status (p= 0.325), or income (p= 0.720). The participants’ experience with the LD-dcp technical aspect was good (mean SUS 4.4) and they found it useful, but not critical to decide to donate. The main concerns were about both donor and recipient coping after surgery.

Conclusions:

LD candidate education about the living donation process was successfully achieved with telemedicine. The LD-dcp is a valuable complementary eHealth tool for clinicians, allowing standardization of steps towards the informed consent process. Clinical Trial: NCT04791670


 Citation

Please cite as:

Ortiz F, Grasberg J, Ekstrand A, Helanterä I, Giunti G

Interactive Health Technology Tool for Kidney Living Donor Assessment to Standardize the Informed Consent Process: Usability and Qualitative Content Analysis

JMIR Form Res 2024;8:e47785

DOI: 10.2196/47785

PMID: 38981119

PMCID: 11267092

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