Advanced Kidney Disease Patient Portal: Implementation and Evaluation with Haemodialysis Patients

Abstract

Patients on haemodialysis face complex care pathways, a high treatment burden and lower quality-of-life. Working with multidisciplinary domain experts, we have conducted several iterative development cycles to design, develop and evaluate a portal for patients on haemodialysis that can help them better understand and navigate their care pathways. A key functionality of the portal is to improve data and information sharing with clinicians, including on key aspects of quality-of-life through Patients Reported Outcome Measures. A case study was conducted with multidisciplinary experts and patients in the NHS Greater Glasgow and Clyde health board (Scotland), using interviews combined with the System Usability Scale (n=26). Patients' feedback and system use observations were used to further refine the system design requirements and functionalities. Key lessons include: a wide preference for tablet-based input vs paper, identification of case-specific accessibility issues and situational impairment, benefits of self-completed digital data collection in overcoming such issues and promoting patient independence and privacy, with considerations for maintaining perceived value and engagement with such systems and when to offer alternatives.

Validation of a vascular access specific quality of life measure (VASQoL)

“…16 The 11 point VASQoL measure has also been assessed in parallel work for its usability with excellent patient feedback but highlighting the need for ongoing work to improve accessibility particularly for those with limited vision. 38 The validation of the VASQoL measure reported in this paper now offers the opportunity to assess patient reported outcomes alongside traditional VA trial endpoints in the knowledge that it reflects outcomes that are of importance to both patients and professionals. 39…”

“…16 The 11 point VASQoL measure has also been assessed in parallel work for its usability with excellent patient feedback but highlighting the need for ongoing work to improve accessibility particularly for those with limited vision. 38…”

Patient-Centred, Technology-Based Interventions for High Treatment Burden: An Overview of the State of the Art

“…While well-designed technologies can indeed provide useful and practical support for high treatment burden patients, special consideration should be given to ensure patients who cannot access or use technology-based interventions are not inadvertently excluded [14]. The relationship between patient and healthcare provider should also be taken into consideration during the design and implementation phases [30][31][32][33][34][35] to ensure that patient-centered care remains the focus of the intervention for both patients and clinicians.…”

A national co-design workshop of a mobile-based application for vascular access as a patient decision aid

“…Initial overview: The session was delivered in four sections: firstly, demographic data was collected; secondly, an overall opinion was obtained about the types of patient information sources and satisfaction with these through the Zoom polling features; thirdly, the participants were asked a series of eight questions regarding the main problem areas with patient information systems identified from a literature review 8 (Table 1). A 6-min video demonstrating some of the features of the VA App was then shown, following which the participants were then re-asked the same questions following the demonstration to determine if in these specific areas the VA App would make it better or worse.…”