<div><span style="color: rgb(46, 46, 46); font-family: Helvetica;">End-Stage Kidney Failure occurs when kidney function can no longer sustain everyday life. ESKF is a rapidly increasing global health problem that carries a significant healthcare burden and is associated with increasing age. An estimated 2.6 million people received Kidney Replacement Therapy in 2010; however, 2–3 times that number was estimated to need KRT and died because of lack of access. This is also reflected in morbidity rates, with an estimated worldwide prevalence rate of 9.1% and a loss of 35.8 million Disability-Adjusted Life-Years</span><span style="color: rgb(46, 46, 46); font-family: Helvetica;">.</span><br></div><p id="p0015" style="margin-bottom: 16px; padding: 0px; color: rgb(46, 46, 46); font-family: NexusSerif, Georgia, &quot;Times New Roman&quot;, Times, STIXGeneral, &quot;Cambria Math&quot;, &quot;Lucida Sans Unicode&quot;, &quot;Microsoft Sans Serif&quot;, &quot;Segoe UI Symbol&quot;, &quot;Arial Unicode MS&quot;, serif; font-size: 18px;"><span style="font-family: Helvetica; font-size: 14px;">KRT comprises three main modalities they are as... kidney transplantation, hemodialysis (HD; home or in-center), or peritoneal dialysis (PD). Globally, access to KRT is influenced by prevailing healthcare infrastructure and funding</span><span style="font-family: Helvetica; font-size: 14px;">, and access to treatment varies; the proportion of people with ESKF not receiving KRT is significantly higher in low (96%), and lower-middle (90%) income countries compared to upper-middle (70%) and high-income countries (40%). An estimated 80% of those receiving KRT will undergo HD in-center, with regional variation observed in New Zealand.</span></p><p id="p0020" style="margin-bottom: 16px; padding: 0px; color: rgb(46, 46, 46); font-family: NexusSerif, Georgia, &quot;Times New Roman&quot;, Times, STIXGeneral, &quot;Cambria Math&quot;, &quot;Lucida Sans Unicode&quot;, &quot;Microsoft Sans Serif&quot;, &quot;Segoe UI Symbol&quot;, &quot;Arial Unicode MS&quot;, serif; font-size: 18px;"><span style="font-family: Helvetica; font-size: 14px;">In the UK, 68,111 adults and 832 children received KRT in 2019 </span><span style="font-family: Helvetica; font-size: 14px;">&nbsp;over half received a transplant (56.8%), while over one-third (35.8%) had HD in-center, 2% had home HD, and 5.4% received PD. Approximately 61% of this population are male, while in terms of ethnicity, three-quarters identify as White, 14.5% as Asian, and 8.9% as Black. . While this access is theoretically universal in the UK via the National Health Service, variation is observed and stratified by race, socioeconomic status, and underlying comorbidity.</span><img src="/media/django-summernote/2022-11-07/b2cb48ea-0a72-4027-9800-9addb1544429.png" style="width: 698.013px;"></p><p id="p0025" style="margin-bottom: 16px; padding: 0px; color: rgb(46, 46, 46); font-family: NexusSerif, Georgia, &quot;Times New Roman&quot;, Times, STIXGeneral, &quot;Cambria Math&quot;, &quot;Lucida Sans Unicode&quot;, &quot;Microsoft Sans Serif&quot;, &quot;Segoe UI Symbol&quot;, &quot;Arial Unicode MS&quot;, serif; font-size: 18px;"><span style="font-family: Helvetica; font-size: 14px;">While awaiting transplantation, most people opt for hemodialysis, where blood is removed and passed through a dialysis machine to remove waste, electrolytes, and excess fluid before being returned to the body. Patients typically dialyze in a dialysis unit for 4&nbsp;​hours, three times a week. To enable hemodialysis, patients must have a form of ‘vascular access (VA) with three options regularly used in the UK:</span></p><dl class="list" style="margin-right: 0px; margin-bottom: 24px; margin-left: 0px; padding: 0px;"><dt class="list-label" style="margin: 0px 2px 0px 0px; padding: 0px; float: left; clear: left;">i.</dt><dd class="list-description" style="margin: 0px 0px 0px 24px; padding: 0px;"><p id="p0030" style="margin-bottom: 16px; padding: 0px;"><span style="margin: 0px; padding: 0px; font-weight: bolder;">Arteriovenous fistula (AFV/fistula):</span>&nbsp;surgically created by joining a vein to an artery in the arm that enlarges over time. While offering the longest-lasting and lowest infection risk for dialysis, fistula operations have a success rate of only 50%, and often need several interventions.</p></dd><dt class="list-label" style="margin: 0px 2px 0px 0px; padding: 0px; float: left; clear: left;">ii.</dt><dd class="list-description" style="margin: 0px 0px 0px 24px; padding: 0px;"><p id="p0035" style="margin-bottom: 16px; padding: 0px;"><span style="margin: 0px; padding: 0px; font-weight: bolder;">Arteriovenous graft (AVG/graft):</span>&nbsp;synthetic tube surgically inserted in the arm or leg, joining an artery and vein, where needles can be inserted (cannulated) for dialysis. While nearly always successful, grafts require more intervention to maintain function and have more limited durability.</p></dd><dt class="list-label" style="margin: 0px 2px 0px 0px; padding: 0px; float: left; clear: left;">iii.</dt><dd class="list-description" style="margin: 0px 0px 0px 24px; padding: 0px;"><p id="p0040" style="margin-bottom: 16px; padding: 0px;"><span style="margin: 0px; padding: 0px; font-weight: bolder;">Central Venous Catheter (CVC/line):</span>&nbsp;plastic tubes inserted through the skin surface, tunneled under the skin, and then passed into a large vein in the neck. Although lines do not require needling to allow dialysis, 20–50% require replacement within the first six months, have the highest rate of serious infection, and can lead to long-term scarring of the central draining veins which is difficult to treat.</p></dd></dl><p></p><p id="p0045" style="margin-bottom: 16px; padding: 0px; color: rgb(46, 46, 46); font-family: NexusSerif, Georgia, &quot;Times New Roman&quot;, Times, STIXGeneral, &quot;Cambria Math&quot;, &quot;Lucida Sans Unicode&quot;, &quot;Microsoft Sans Serif&quot;, &quot;Segoe UI Symbol&quot;, &quot;Arial Unicode MS&quot;, serif; font-size: 18px;"><span style="font-family: Helvetica; font-size: 14px;">Whilst it is well recognized that significant underlying disease and the state of kidney failure can affect well-being, it is less understood how the widely varying modality of vascular access&nbsp;</span><em style="margin: 0px; padding: 0px;"><span style="font-family: Helvetica; font-size: 14px;">specifically</span></em><span style="font-family: Helvetica; font-size: 14px;">&nbsp;impacts well-being. For most requiring KRT, treatment is supportive rather than curative, thus making the impact on quality of life an essential determinant in selecting vascular access modality.</span></p><ul><li><span style="font-family: Helvetica;">As...prevalence rates of End-Stage Kidney Failure (ESKF) have risen across the world in recent years, making it one of the most common chronic illnesses.</span></li><li><span style="font-family: Helvetica;">The main treatment for ESKF is hemodialysis, where one is ‘connected’ to a dialysis machine to clean and filter the blood via a surgically-created portal, which is also known as ‘vascular access. Without even functioning vascular access, dialysis is impossible.</span></li><li><span style="font-family: Helvetica;">People with ESKF have different experiences with their access modalities, but also universally describe their access point as a ‘lifeline’.</span></li><li><font face="Helvetica">Previous research has emphasized&nbsp;its impact on well-being&nbsp;specifically on short- and long-term outcomes.</font></li><li><span style="font-family: Helvetica;">Capturing Quality of Life (QoL) within ESKF populations has traditionally focused on assessing well-being from an objective, normative, top-down stance, rather than appreciating the nuanced effect vascular access can have as experienced by those living with kidney failure.</span></li><li><span style="font-family: Helvetica;">In this article, we have argued current QoL measures used with ESKF groups are insufficient at capturing the impact of vascular access on wellbeing.</span></li></ul><p id="p0050" style="margin-bottom: 16px; padding: 0px; color: rgb(46, 46, 46); font-family: NexusSerif, Georgia, &quot;Times New Roman&quot;, Times, STIXGeneral, &quot;Cambria Math&quot;, &quot;Lucida Sans Unicode&quot;, &quot;Microsoft Sans Serif&quot;, &quot;Segoe UI Symbol&quot;, &quot;Arial Unicode MS&quot;, serif; font-size: 18px;"><span style="font-family: Helvetica; font-size: 14px;">This research sought to explore the relationship between vascular access and the Quality of Life of patients with ESKF in the UK. In this paper, we make the case for&nbsp;</span><em style="margin: 0px; padding: 0px;"><span style="font-family: Helvetica; font-size: 14px;">why</span></em><span style="margin: 0px; padding: 0px;"><span style="font-family: Helvetica; font-size: 14px;">&nbsp;current&nbsp;</span><a href="https://www.sciencedirect.com/topics/social-sciences/quality-of-life-measure" title="Learn more about QoL measures from ScienceDirect's AI-generated Topic Pages" class="topic-link" style="margin: 0px; padding: 0px; text-decoration-line: underline; text-decoration-thickness: 1px; text-decoration-color: rgb(46, 46, 46); color: rgb(46, 46, 46); word-break: break-word; text-underline-offset: 1px;"><span style="font-family: Helvetica; font-size: 14px;">QoL measures</span></a><span style="font-family: Helvetica; font-size: 14px;">&nbsp;are insufficient and do not fully encapsulate the experience of living with ESKF. Evidence is used gathered through interviews to demonstrate the value of adopting Nussbaum's&nbsp;</span></span><em style="margin: 0px; padding: 0px;"><span style="font-family: Helvetica; font-size: 14px;">Capabilities Approach</span></em><span style="font-family: Helvetica; font-size: 14px;">&nbsp;in formulating a better understanding of the quality of life for those with ESKF.</span><img src="/media/django-summernote/2022-11-07/441943ea-1309-4c40-bb63-f6c37b1c0046.png" style="width: 100%;"></p><section id="sec1.1" style="margin: 0px 0px 8px; padding: 0px; color: rgb(46, 46, 46); font-family: NexusSerif, Georgia, &quot;Times New Roman&quot;, Times, STIXGeneral, &quot;Cambria Math&quot;, &quot;Lucida Sans Unicode&quot;, &quot;Microsoft Sans Serif&quot;, &quot;Segoe UI Symbol&quot;, &quot;Arial Unicode MS&quot;, serif; font-size: 18px;"><ul><li style="margin-right: 0px; margin-left: 0px; padding: 0px; color: rgb(80, 80, 80); margin-top: 24px !important; margin-bottom: 8px !important; font-size: 1rem !important; line-height: 1.4 !important;"><span style="font-family: Helvetica; font-size: 14px;"><b>Quality life:</b></span><br></li></ul><p id="p0055" style="margin-bottom: 16px; padding: 0px;"><span style="font-family: Helvetica; font-size: 14px;">Quality of Life (QoL) refers to “individuals' perceptions of their position in life in the context of the culture and value systems in which they live and about their goals, expectations, standards, and concerns”</span><span style="font-family: Helvetica; font-size: 14px;">.&nbsp;</span><em style="margin: 0px; padding: 0px;"><span style="font-family: Helvetica; font-size: 14px;">Health-Related</span></em><span style="font-family: Helvetica; font-size: 14px;">&nbsp;Quality of Life (HR-QoL) focuses specifically on the role health has in determining QoL</span><span style="font-family: Helvetica; font-size: 14px;">. There is a complex inter-relationship between objective and subjective indicators used to derive QoL/HR-QoL – including social, environmental, psychological, and physical factors, integral to a person's interpretation of their well-being</span><span style="font-family: Helvetica; font-size: 14px;">.</span></p><p id="p0060" style="margin-bottom: 16px; padding: 0px;"><span style="font-family: Helvetica; font-size: 14px;">Objective indicators represent ‘normative functionings’ – actions most able-bodied people can perform, such as walking, dressing, and bathing.&nbsp;</span><span style="font-family: Helvetica; font-size: 14px;">“… the “normal” also contains often opaque and unquestioned value judgments and is used to represent what is right, and desirable. Often, when normalcy is invoked, there is a blurring of the distinction between fact and value, confusing what is, with what should be.”&nbsp;</span></p><p></p><p id="p0065" style="margin-bottom: 16px; padding: 0px;"><span style="font-family: Helvetica; font-size: 14px;">Consequently, the voices of ‘non-normative’ bodies – those falling out with the expected, healthy, functional ‘norm’ – are silenced and ignored.</span></p><p id="p0070" style="margin-bottom: 16px; padding: 0px;"><span style="font-family: Helvetica; font-size: 14px;">This study focuses on ‘non-normative’ bodies with ESKF, changed through the presence of a chronic, life-limiting illness. Non-normative bodies typically have their ability to attain abstract, culturally-defined norms required for the fulfillment of subjective markers integral to a ‘good’ QoL – e.g., having children or a ‘professional’ career – restricted by both bodily, corporeal limits&nbsp;</span><em style="margin: 0px; padding: 0px;"><span style="font-family: Helvetica; font-size: 14px;">and</span></em><span style="font-family: Helvetica; font-size: 14px;">&nbsp;societal and structural barriers impeding their ability</span><span style="font-family: Helvetica; font-size: 14px;">. We argue the incorporation of such normative markers within QoL measures further compounds the able-bodied/disabled dichotomy – in many cases, presenting an unattainable ‘ideal’ by which non-normative bodies are measured against, compounding the wider impact of ableism from something seemingly innocuous.</span><span style="font-family: Helvetica; font-size: 14px;">, emphasized the wider socioeconomic and political impact:&nbsp;</span><span style="font-family: Helvetica; font-size: 14px;">“Within a democratic notion of&nbsp;</span><a href="https://www.sciencedirect.com/topics/social-sciences/citizenship" title="Learn more about citizenship from ScienceDirect's AI-generated Topic Pages" class="topic-link" style="font-size: 17.5px; background-color: rgb(255, 255, 255); margin: 0px; padding: 0px; text-decoration-line: underline; text-decoration-thickness: 1px; text-decoration-color: rgb(46, 46, 46); color: rgb(46, 46, 46); word-break: break-word; text-underline-offset: 1px;"><span style="font-family: Helvetica; font-size: 14px;">citizenship</span></a><span style="font-family: Helvetica; font-size: 14px;">, each individual is assumed to possess the characteristics of self-reliance, efficiency and competitiveness. As a result, an idealized version of the “average person” has come to exist, while those who do not possess these privileged characteristics are considered abnormal—often because of the perception that they are not healthy. [… Disabled people] are seen as both political and medical challenges, and problems.”</span></p><p></p><p id="p0075" style="margin-bottom: 16px; padding: 0px;"><span style="font-family: Helvetica; font-size: 14px;">That's why reframing the ‘ESKF body’ within an impairment-inclusive QoL model was a central aim of this project.</span></p></section>