Frailty and the psychosocial components of the edmonton frail scale are most associated with patient experience in older kidney transplant candidates – a secondary analysis within the kidney transplantation in older people (KTOP) study

© 2023 Thind, Levy, Wellsted, Willicombe and Brown. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). https://creativecommons.org/licenses/by/4.0/Background: Older people with end-stage kidney disease (ESKD) are vulnerable to frailty, which impacts on clinical and experiential outcomes. With kidney transplantation in older people increasing, a better understanding of patient experiences is necessary for guiding decision making. The Kidney Transplantation in Older People (KTOP):impact of frailty on outcomes study aims to explore this. We present a secondary analysis of the Edmonton Frail Scale (EFS) and its relationship with patient experience scores. Methods: The KTOP study is a single centre, prospective study, which began in October 2019. All ESKD patients aged ≥60 considered for transplantation at Imperial College Renal and Transplant Centre were eligible. Frailty was assessed using the EFS and 5 questionnaires assessed patient experience and quality of life (QoL) (Short Form-12(v2), Palliative Care Outcome Scale–Symptoms Renal, Depression Patient Health Questionnaire-9, Illness Intrusiveness Ratings Scale, Renal Treatment Satisfaction Questionnaire). The EFS was divided into 4 subdomains (psychosocial, physical function, medical status, and general health) and then compared with the questionnaire scores. Results: 210 patients have been recruited (aged 60-78), 186 of whom completed EFS assessments. 118 (63.4%) participants were not frail, 36 (19.4%) vulnerable, and 32 (17.2%) were frail. Worse frailty scores were associated with poorer patient experience and QoL scores across all questionnaires. Severe deficits in the EFS psychosocial subdomain showed a statistically significant association with higher depression screen scores (coefficient 4.9, 95% CI 3.22 to 6.59), lower physical (coefficient -4.35, 95% CI -7.59 to -1.12) and mental function scores (coefficient -8.33, 95% CI -11.77 to -4.88) from the Short Form-12(v2), and lower renal treatment satisfaction scores (coefficient -5.54, 95% CI -10.70 to -0.37). Deficits in the physical function and medical status EFS subdomians showed some association with patient experience scores. Conclusion: In the KTOP study cohort at recruitment vulnerable and frail candidates reported worse QoL and patient experiences. Severe deficits in the psychosocial subdomains of the EFS showed a strong association with patient experience and QoL, whilst physical function and medical status deficits showed a lesser association. This has highlighted specific EFS domains that may be suitable for targeted interventions to improve experiences and optimise outcomes.Peer reviewe

Frailty and the psychosocial components of the edmonton frail scale are most associated with patient experience in older kidney transplant candidates – a secondary analysis within the kidney transplantation in older people (KTOP) study

BackgroundOlder people with end-stage kidney disease (ESKD) are vulnerable to frailty, which impacts on clinical and experiential outcomes. With kidney transplantation in older people increasing, a better understanding of patient experiences is necessary for guiding decision making. The Kidney Transplantation in Older People (KTOP):impact of frailty on outcomes study aims to explore this. We present a secondary analysis of the Edmonton Frail Scale (EFS) and its relationship with patient experience scores.MethodsThe KTOP study is a single centre, prospective study, which began in October 2019. All ESKD patients aged ≥60 considered for transplantation at Imperial College Renal and Transplant Centre were eligible. Frailty was assessed using the EFS and 5 questionnaires assessed patient experience and quality of life (QoL) (Short Form-12(v2), Palliative Care Outcome Scale–Symptoms Renal, Depression Patient Health Questionnaire-9, Illness Intrusiveness Ratings Scale, Renal Treatment Satisfaction Questionnaire). The EFS was divided into 4 subdomains (psychosocial, physical function, medical status, and general health) and then compared with the questionnaire scores.Results210 patients have been recruited (aged 60-78), 186 of whom completed EFS assessments. 118 (63.4%) participants were not frail, 36 (19.4%) vulnerable, and 32 (17.2%) were frail. Worse frailty scores were associated with poorer patient experience and QoL scores across all questionnaires. Severe deficits in the EFS psychosocial subdomain showed a statistically significant association with higher depression screen scores (coefficient 4.9, 95% CI 3.22 to 6.59), lower physical (coefficient -4.35, 95% CI -7.59 to -1.12) and mental function scores (coefficient -8.33, 95% CI -11.77 to -4.88) from the Short Form-12(v2), and lower renal treatment satisfaction scores (coefficient -5.54, 95% CI -10.70 to -0.37). Deficits in the physical function and medical status EFS subdomians showed some association with patient experience scores.ConclusionIn the KTOP study cohort at recruitment vulnerable and frail candidates reported worse QoL and patient experiences. Severe deficits in the psychosocial subdomains of the EFS showed a strong association with patient experience and QoL, whilst physical function and medical status deficits showed a lesser association. This has highlighted specific EFS domains that may be suitable for targeted interventions to improve experiences and optimise outcomes

Epidemiology of Renal Palliative Care

ABSTRACT The need for palliative care for patients with end-stage renal disease (ESRD) is increasingly recognized. Patients starting renal replacement therapy are now elderly, with a median age of 65 years, and with multiple comorbid conditions. Quality of life is often poor and with advance care planning, patients can be enabled to make the choice of stopping or not starting dialysis. With planned end-of-life management patients can then choose their place of death. These discussions have to be initiated by the renal team. The involvement of palliative care professionals in patients with ESRD is therefore both educational and the provision of community and hospice care. 124

Proceedings From the Symposium on Kidney Disease in Older People: Royal Society of Medicine, London, January 19, 2017

People are living longer. On the whole, they have healthier lives and many of the problems previously seen at a younger age now appear in their later years. Kidneys, like other organs, age, and kidney disease in the aged is a prime example. In the United Kingdom, as in other developed countries, the prevalence of end stage kidney disease is highest in the 70- to 79-year-old age group. There are many older people who require renal replacement and are now considered for dialysis. While older patients with end-stage renal disease invariably aspire for a better quality of life, this needs a specialized approach and management. In January 2017, the Royal Society of Medicine held a seminar in London on “Kidney Disease in Older People” with presentations from a multidisciplinary body of experts speaking on various aspects of kidney problems in this age group and its management. The objectives were to increase awareness and improve the understanding of nephrology in the context of geriatric medicine but also geriatrics in its interface with nephrology, especially in the area of chronic kidney disease

Nephrologists' perceptions regarding dialysis withdrawal and palliative care in Europe: lessons from a European Renal Best Practice survey

Background There is a variation in dialysis withdrawal rates, but reasons for this variation across European countries are largely unknown. We therefore surveyed nephrologists' perceptions of factors concerning dialysis withdrawal and palliative care and explored relationships between these perceptions and reports of whether withdrawal actually occurred in practice. Methods We developed a 33-item electronic survey, disseminated via an email blast to all European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) members. In our data analyses, we distinguished those respondents who reported occurrence from those reporting no dialysis withdrawal in their unit. With multilevel logistic regression, we investigated the association between respondents' characteristics and perceptions and whether they reported occurrence of dialysis withdrawal or not. Results Five hundred and twenty-eight nephrologists from 45 countries completed the questionnaire; 42% reported occurrence of withdrawal in their unit in the past year, and 56% perceived that stopping life-prolonging treatment in terminally ill patients was allowed. Few respondents reported presence in their unit of protocols on withdrawal decision making (7%) or palliative care (10%) or the common involvement of a geriatrician in withdrawal decisions (10%). The majority stated that palliative care had not been part of their core curriculum (74%) and that they had not recently attended continuous medical education sessions on this topic (73%). Respondents from Eastern and Southern Europe had a 42 and 40% lower probability, respectively, of reporting withdrawal compared with those from North European countries. Working in a public centre [odds ratio (OR), 2.41; 95% confidence interval (CI), 1.36-4.25] and respondents' perception that stopping life-prolonging treatment in terminally ill patients was allowed (OR, 1.96; 95% CI, 1.23-3.12), that withdrawal decisions were commonly shared between doctor and patient (OR, 1.97; 95% CI, 1.26-3.08) and that palliative care was reimbursed (OR, 1.81; 95% CI, 1.16-2.83) increased the odds of reporting occurrence of withdrawal. Conclusion Reports of dialysis withdrawal occurrence varied between European countries. Occurrence reports were more likely if respondents worked in a public centre, if stopping life-prolonging treatments was perceived as allowed, if withdrawal decisions were considered shared between doctors and patients and if reimbursement of palliative care was believed to be in place. There is room for improvement regarding protocols on withdrawal and palliative care processes and regarding nephrologists' training and education on end-of-life car

Prevalence of frailty and cognitive impairment in older transplant candidates - a preview to the Kidney Transplantation in Older People (KTOP): impact of frailty on outcomes study

© The Author(s) 2022. This article is licensed under a Creative Commons Attribution 4.0 International License. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.Abstract: Background: Kidney transplantation in older people has increased, however older transplant recipients experience mixed outcomes that invariably impacts on their quality of life. The increased vulnerability of older end stage kidney disease patients to frailty and cognitive impairment, may partially explain the differences in outcomes observed. The Kidney Transplantation in Older People (KTOP): impact of frailty on clinical outcomes study is an active clinical study aiming to explore the experience of older people waiting for and undergoing transplantation. In this manuscript we present the study protocol, the study cohort, and the prevalence of frailty and cognitive impairment identified at recruitment. Methods: The KTOP study is a single centre, prospective, mixed methods, observational study. Recruitment began in October 2019. All patients aged 60 or above either active on the deceased donor waitlist or undergoing live donor transplantation were eligible for recruitment. Recruited participants completed a series of questionnaires assessing frailty, cognition, and quality of life, which are repeated at defined time points whilst on the waitlist and post-transplant. Clinical data was concurrently collected. Any participants identified as frail or vulnerable were also eligible for enrolment into the qualitative sub-study. Results: Two hundred eight participants have been recruited (age 60–78). Baseline Montreal Cognitive Assessments were available for 173 participants, with 63 (36.4%) participants identified as having scores below normal (score < 26). Edmonton Frail Scale assessments were available for 184 participants, with 29 participants (15.8%) identified as frail (score ≥ 8), and a further 37 participants (20.1%) identified as being vulnerable (score 6–7). Conclusion: In the KTOP study cohort we have identified a prevalence of 36.4% of participants with MoCA scores suggestive of cognitive impairment, and a prevalence of frailty of 15.8% at recruitment. A further 20.1% were vulnerable. As formal testing for cognition and frailty is not routinely incorporated into the work up of older people across many units, the presence and significance of these conditions is likely not known. Ultimately the KTOP study will report on how these parameters evolve over time and following a transplant, and describe their impact on quality of life and clinical outcomes.Peer reviewe

Exploring access to end of life care for ethnic minorities with end stage kidney disease through recruitment in action research

BACKGROUND: Variation in provision of palliative care in kidney services and practitioner concerns to provide equitable access led to the development of this study which focussed on the perspectives of South Asian patients and their care providers. As people with a South Asian background experience a higher risk of Type 2 Diabetes (T2DM) and end stage kidney failure (ESKF) compared to the majority population but wait longer for a transplant, there is a need for end of life care to be accessible for this group of patients. Furthermore because non English speakers and people at end of life are often excluded from research there is a dearth of research evidence with which to inform service improvement. This paper aims to explore issues relating to the process of recruitment of patients for a research project which contribute to our understanding of access to end of life care for ethnic minority patients in the kidney setting. METHODS: The study employed an action research methodology with interviews and focus groups to capture and reflect on the process of engaging with South Asian patients about end of life care. Researchers and kidney care clinicians on four NHS sites in the UK recruited South Asian patients with ESKF who were requiring end of life care to take part in individual interviews; and other clinicians who provided care to South Asian kidney patients at end of life to take part in focus groups exploring end of life care issues. In action research planning, action and evaluation are interlinked and data were analysed with emergent themes fed back to care providers through the research cycle. Reflections on the process of patient recruitment generated focus group discussions about access which were analysed thematically and reported here. RESULTS: Sixteen patients were recruited to interview and 45 different care providers took part in 14 focus groups across the sites. The process of recruiting patients to interview and subsequent focus group data highlighted some of the key issues concerning access to end of life care. These were: the identification of patients approaching end of life; and their awareness of end of life care; language barriers and informal carers' roles in mediating communication; and contrasting cultures in end of life kidney care. CONCLUSIONS: Reflection on the process of recruitment in this action research study provided insight into the complex scenario of end of life in kidney care. Some of the emerging issues such as the difficulty identifying patients are likely to be common across all patient groups, whilst others concerning language barriers and third party communication are more specific to ethnic minorities. A focus on South Asian ethnicity contributes to better understanding of patient perspectives and generic concepts as well as access to end of life kidney care for this group of patients in the UK. Action research was a useful methodology for achieving this and for informing future research to include informal carers and other ethnic groups.Peer reviewedFinal Published versio

Managing the symptom burden associated with maintenance dialysis: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference

Individuals with kidney failure undergoing maintenance dialysis frequently report a high symptom burden that can interfere with functioning and diminish life satisfaction. Until recently, the focus of nephrology care for dialysis patients has been related primarily to numerical targets for laboratory measures, and outcomes such as cardiovascular disease and mortality. Routine symptom assessment is not universal or standardized in dialysis care. Even when symptoms are identified, treatment options are limited and are initiated infrequently, in part because of a paucity of evidence in the dialysis population and the complexities of medication interactions in kidney failure. In May of 2022, Kidney Disease: Improving Global Outcomes (KDIGO) held a Controversies Conference-Symptom-Based Complications in Dialysis-to identify the optimal means for diagnosing and managing symptom-based complications in patients undergoing maintenance dialysis. Participants included patients, physicians, behavioral therapists, nurses, pharmacists, and clinical researchers. They outlined foundational principles and consensus points related to identifying and addressing symptoms experienced by patients undergoing dialysis and described gaps in the knowledge base and priorities for research. Healthcare delivery and education systems have a responsibility to provide individualized symptom assessment and management. Nephrology teams should take the lead in symptom management, although this does not necessarily mean taking ownership of all aspects of care. Even when options for clinical response are limited, clinicians should focus on acknowledging, prioritizing, and managing symptoms that are most important to individual patients. A recognized factor in the initiation and implementation of improvements in symptom assessment and management is that they will be based on locally existing needs and resources

Ebola Virus Ribonucleic Acid Detection in Semen More Than Two Years After Resolution of Acute Ebola Virus Infection

Among 149 men who survived Ebola virus disease (EVD) and donated semen 260-1016 days after EVD onset, Ebola virus (EBOV) ribonucleic acid (RNA) was detected in 13 (9%). Of 137 men who donated semen 2 years after EVD onset, 11 (8%) had an EBOV RNA-positive specimen. The mechanism underlying the persistence of EBOV RNA in semen is unclear, and it is unclear whether the detection of viral RNA represents the presence of infectious virus

Availability of assisted peritoneal dialysis in Europe : call for increased and equal access

Background Availability of assisted PD (asPD) increases access to dialysis at home, particularly for the increasing numbers of older and frail people with advanced kidney disease. Although asPD has been widely used in some European countries for many years, it remains unavailable or poorly utilized in others. A group of leading European nephrologists have therefore formed a group to drive increased availability of asPD in Europe and in their own countries. Methods Members of the group filled in a proforma with the following headings: personal experience, country experience, who are the assistants, funding of asPD, barriers to growth, what is needed to grow and their top three priorities. Results Only 5 of the 13 countries surveyed provided publicly funded reimbursement for asPD. The use of asPD depends on overall attitudes to PD, with all respondents mentioning the need for nephrology team education and/or patient education and involvement in dialysis modality decision making. Conclusions and call to action Many people with advanced kidney disease would prefer to have their dialysis at home, yet if the frail patient chooses PD most healthcare systems cannot provide their choice. AsPD should be available in all countries in Europe and in all renal centres. The top priorities to make this happen are education of renal healthcare teams about the advantages of PD, education of and discussion with patients and their families as they approach the need for dialysis, and engagement with policymakers and healthcare providers to develop and support assistance for PD.Peer reviewe