In 2013, the UK national renal registry established 57,000 adults in the UK were treated for advanced kidney failure, 23,683 (42%) receiving haemodialysis. Haemodialysis patients face some of the highest treatment burden in the National Health Service (NHS) and are among the most 'expensive' to treat. In addition, patients endure complex treatment trajectories. In this study, we have sought to gather and synthesise the opinion of clinical and Human Computer Interaction (HCI) domain experts (n=9) to establish a set of initial design requirements in order to test the feasibility of developing a digital aid (i.e. electronic haemodialysis patient portal) to support patients in the course of their treatment. Expert feedback was gathered by means of interviews and focus groups in order to instruct design requirements for a haemodialysis patient portal.

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Background: A self-administered 11 item vascular access specific quality of life measure (VASQoL) was previously derived from detailed qualitative interviews with adult patients with kidney failure who have experienced vascular access using the Capabilities Approach as a theoretical base. This study reports the psychometric validation of the VASQoL measure including its reliability, content validity and responsiveness to change. Methods: Cognitive interviews were conducted with 23 adult patients with kidney failure after completion of the VASQoL measure. Focus group discussion with a vascular access professional multidisciplinary team was undertaken ( n = 8) and subsequently a further 101 adult kidney failure patients with vascular access (TCVC, AVF or AVG) completed the digital VASQoL measure, EQ-5D and SF-36 questionnaires in a longitudinal study with prospectively recorded vascular access events. Results: Transcript analysis of cognitive interviews after VASQoL completion indicated that the content was comprehensive and well understood by participants. Assessment of Internal reliability for the VASQoL measure was high (Cronbach’s alpha 0.858). Test-retest reliability of the overall VASQoL measure was high (intra class correlation coefficient 0.916). In those patients who experienced a vascular access event, significant differences were observed in paired analysis of the VASQoL physical domain questions and vascular access function domain questions and in the EQ-5D usual activities, pain and anxiety domains. In those with no vascular access event, variation was observed in longitudinal analysis in VASQoL questions relating to worry about VA function and capability domains, whilst no variation was observed in the EQ5D measure. Conclusion: The VASQoL measure has good internal consistency, test-retest reliability, convergent validity and responsiveness to change for clinically relevant vascular access outcomes. This provides a validated, vascular access specific quality of life measure that can be used in future trials of vascular access, evaluation of new technologies and routine use as a patient reported outcome measure (PROM).

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