Donal O'Donoghue

Executive summary of the KDIGO Controversies Conference on Supportive Care in Chronic Kidney Disease: developing a roadmap to improving quality care

Patients with advanced chronic kidney disease (CKD) have a high burden of physical and psychosocial symptoms, poor outcomes, and high costs of care. Current paradigms of care for this highly vulnerable population are variable, prognostic and assessment tools are limited, and quality of care, particularly regarding conservative and palliative care, is suboptimal. The KDIGO Controversies Conference on Supportive Care in CKD reviewed the current state of knowledge in order to define a roadmap to guide clinical and research activities focused on improving the outcomes of people living with advanced CKD, including those on dialysis. An international group of multidisciplinary experts in CKD, palliative care, methodology, economics, and education identified the key issues related to palliative care in this population. The conference led to a working plan to address outstanding issues in this arena, and this executive summary serves as an output to guide future work, including the development of globally applicable guidelines.

The economic impact of acute kidney injury in England

BACKGROUNDnAcute kidney injury (AKI) is one of the most common complications affecting hospital inpatients around the world. It is associated with high mortality and adverse long-term outcomes, but there is uncertainty regarding its prevalence and cost. We estimate the prevalence of AKI in hospital inpatients in a universal health-care system, and the immediate and long-term impacts on survival, quality of life and health-care costs.nnnMETHODSnWe examined prevalence of AKI in inpatients using both routine national data for the National Health Service (NHS) in England, and laboratory data from East Kent Hospitals. We used regression analyses to estimate the impact of AKI on mortality and length of hospital stay, and a Markov model to estimate the impact on quality-adjusted life years and NHS costs.nnnRESULTSnAKI was recorded in 2.43% of hospital admissions in Hospital Episode Statistics (HES), but age- and gender-standardized estimates derived from laboratory data suggest the true prevalence may be more than five times as high (14.15%). We estimate that the annual number of excess inpatient deaths associated with AKI in England may be above 40,000. The annual cost of AKI-related inpatient care in England is estimated at £1.02 billion, just over 1% of the NHS budget. The lifetime cost of post-discharge care for people who had AKI during hospital admission in 2010-11 is estimated at £179 million.nnnCONCLUSIONSnAKI prevalence in inpatients may be considerably higher than previously thought, and up to four fifths of cases may not be captured in routine hospital data. AKI is associated with large numbers of in-hospital deaths and with high NHS costs. Comparison of HES and East Kent data suggests that most of the cases recorded in HES may be relatively severe AKI (AKIN 2-3).

Electronic consultation as an alternative to hospital referral for patients with chronic kidney disease: a novel application for networked electronic health records to improve the accessibility and efficiency of healthcare

Problem Chronic kidney disease is increasingly recognised in the UK, leading to a greater demand for specialist services. Traditional means of meeting this demand rely on GP referral of patients to see a nephrologist. Hospital assessment may be inconvenient for patients and inefficient for health services. Setting 17 general practices and a secondary care nephrology service in Bradford, UK. Design A before and after evaluation comparing nephrology referrals from implementation and non-implementation practices following the introduction of electronic consultations (e-consultations) for chronic kidney disease. Key measures for improvement The number, appropriateness and quality of new referrals (paper and electronic) from primary care, the timeliness of responses and the satisfaction of patients and health professionals with the new service. Strategies for change Electronic sharing of primary care electronic health records with the nephrology service was introduced to implementation practices. Participating GPs attended education workshops and received paper and e-guidance about the new service. Effects of change There was a significant reduction in paper referrals from implementation practices. E-consultation provided nephrologists with access to more clinical information. GPs reported that the service was convenient, provided timely and helpful advice, and avoided outpatient referrals. Specialist recommendations were well followed, and GPs felt more confident about managing chronic kidney disease in the community. Lessons learnt E-consultation promotes effective management of patients with mild-to-moderate chronic kidney disease in primary care, allowing specialist resources to be directed towards supporting patients with more complex needs. There is a potential role for e-consultation in other chronic disease specialties.

Establishing Core Outcome Domains in Hemodialysis: Report of the Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) Consensus Workshop

Evidence-informed decision making in clinical care and policy in nephrology is undermined by trials that selectively report a large number of heterogeneous outcomes, many of which are not patient centered. The Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) Initiative convened an international consensus workshop on November 7, 2015, to discuss the identification and implementation of a potential core outcome set for all trials in hemodialysis. The purpose of this article is to report qualitative analyses of the workshop discussions, describing the key aspects to consider when establishing core outcomes in trials involving patients on hemodialysis therapy. Key stakeholders including 8 patients/caregivers and 47 health professionals (nephrologists, policymakers, industry, and researchers) attended the workshop. Attendees suggested that identifying core outcomes required equitable stakeholder engagement to ensure relevance across patient populations, flexibility to consider evolving priorities over time, deconstruction of language and meaning for conceptual consistency and clarity, understanding of potential overlap and associations between outcomes, and an assessment of applicability to the range of interventions in hemodialysis. For implementation, they proposed that core outcomes must have simple, inexpensive, and validated outcome measures that could be used in clinical care (quality indicators) and trials (including pragmatic trials) and endorsement by regulatory agencies. Integrating these recommendations may foster acceptance and optimize the uptake and translation of core outcomes in hemodialysis, leading to more informative research, for better treatment and improved patient outcomes.

Conservative Care for ESRD in the United Kingdom: A National Survey

BACKGROUND AND OBJECTIVESnConservative kidney management (CKM) has been developed in the United Kingdom (UK) as an alternative to dialysis for older patients with stage 5 CKD (CKD5) and multiple comorbidities. This national survey sought to describe the current scale and pattern of delivery of conservative care in UK renal units and identify their priorities for its future development.nnnDESIGN, SETTING, PARTICIPANTS, & MEASUREMENTSnA survey on practice patterns of CKM for patients age 75 and older with CKD5 was sent to clinical directors of all 71 adult renal units in the UK in March 2013.nnnRESULTSnSixty-seven units (94%) responded. All but one unit reported providing CKM for some patients. Terminology varied, although conservative management was the most frequently used term (46%). Lack of an agreed-upon definition of when a patient is receiving CKM made it difficult to obtain meaningful data on the numbers of such patients. Fifty-two percent provided the number of CKM patients age ≥ 75 years in 2012; the median was 45 per unit (interquartile range [IQR], 20-83). The median number of symptomatic CKM patients who would otherwise have started dialysis was eight (IQR, 4.5-22). CKM practice patterns varied: 35% had a written guideline, 23% had dedicated CKM clinics, 45% had dedicated staff, and 50% provided staff training on CKM. Most units (88%) provided primary care clinicians with information/advice regarding CKM. Eighty percent identified a need for better evidence comparing outcomes on CKM versus dialysis, and 65% considered it appropriate to enter patients into a randomized trial.nnnCONCLUSIONSnCKM is provided in almost all UK renal units, but scale and organization vary widely. Lack of common terminology and definitions hinders the development and assessment of CKM. Many survey respondents expressed support for further research comparing outcomes with conservative care versus dialysis.

More than a kidney disease: a patient-centred approach to improving care in autosomal dominant polycystic kidney disease

Quality of life surveys in large observational studies such as DOPPS [1] have contributed significantly to our understanding of the impact of living with end-stage renal disease (ESRD). However, the impact of chronic kidney disease (CKD) on quality of life is less well understood. As the commonest hereditary renal disease, with clinical manifestations ranging from asymptomatic to severe progressive CKD, ESRD and death, autosomal dominant polycystic kidney disease (ADPKD) presents a complex but not unique challenge to clinicians. The systematic review by Tong and colleagues highlights the impact of symptoms on quality of life in ADPKD and the all too common gap between the experience of people living with the disease and the services and support available to them. This is compounded by the, until now, lack of a disease-specific treatment for ADPKD. The publication of the TEMPO 3:4 trial analysing tolvaptan treatment presents a promising development in research in the management of ADPKD. However, the continued imperative to develop treatments to retard disease progression should not make us lose sight of the need to better understand its clinical, psychological and social consequences. As a symptom, pain is frequently reported in ADPKD, yet as this and other surveys conducted by patient organizations show, whilst a significant proportion of patients suffer pain, many feel management of that pain is inadequate. A recent review of pain in ADPKD suggested a stepwise approach towards management [2], outlining the evidence and rationale for pharmacological, non-pharmacological and more invasive methods of pain control. This is both a timely reminder of the importance of symptom relief in a condition with no specific therapies, and a valuable starting point for a more holistic approach in which clinicians, patients and carers can act in partnership in decision-making about care. Whilst the evidence base on the ‘if ’ and ‘how’ of self-management of pain is mixed, there is some evidence from other conditions that empowering patients to move from being passive recipients to active participants in the management of their condition permits a more successful outcome [3]. Self-management interventions in arthritis care have been shown to improve pain and quality of life [4], whilst a meta-analysis of self-management education in children with asthma found improved lung function and fewer attendances to the emergency department [5]. In other areas of renal care, as well as in other chronic conditions, it has long been recognized that holistic care requires a broad, inclusive and multidisciplinary approach. The diversity of health beliefs, experiences, symptoms and consequences for those with ADPKD requires care approaches tailored to individual needs. Learning from what we already know is the first step towards a more patient-centred approach to care. Selfcare and self-management are central to the management of diabetes, and have also been used effectively in conditions as diverse as hypertension, heart failure and inflammatory bowel disease. A review of self-management strategies in 2011 identified provision of written information, support including care planning and follow-up, behaviour change coaching, and selfmonitoring as having evidence to support their use in a range of settings [6]. There are models of specialist multidisciplinary services in renal care—of note, conservative care for ESRD, transition clinics at the interface of paediatric and adult nephrology, multidisciplinary care in pregnancy and multisystem disorders such as lupus. The development of peer support programmes has also been shown to be a useful adjunct to traditional models of care [7]. In the UK, the new national guidelines for health emphasize the importance of patient-reported outcomes, quality of life and the experience of care as being at the heart of outcomes measurement [8]. National Voices, a coalition of health and social care charities in England, has launched ‘Person-centred Care 2010’, calling on the UK government to make person-centred care the central ambition for health reform [9]. In the USA, national standards exist for diabetes self-management, and the chronic disease

Sustainability: The seventh dimension of quality in health care

The Institute of Medicine recognizes six domains of quality within health care; high quality health care should be safe, timely, effective, efficient, equitable, and patient centered. On the evidence of his article, published in this edition of the journal, Professor Agar is among the increasing number of health care organizations and professionals for whom a seventh, equally important, domain exists— sustainability. Indeed, the Royal College of Physicians (London) has recently emphasized the importance of embedding sustainability into the delivery of health care. The meanings of the term “sustainability” are wide ranging. Within the health care setting, it is generally used to describe a reconciliation of the environmental, social, and economic demands influencing resource use, in order to facilitate “sustainable development”—the pattern of resource use that allows us to meet our current needs (including the delivery of health care) while preserving the environment in order that the needs of future generations might also be met. Yet the concept of sustainable development, and the importance of population health within this, is not a new one. So what has awoken the environmental conscience of the medical world after all this time? Undoubtedly it has been the relatively recent appreciation of the peculiarly urgent and severe threat to global health presented by one particular environmental concern—unmitigated anthropogenic climate change. Altered patterns of disease and mortality will result from food and water insecurity, extreme climatic events (such as flooding, heat waves, wildfires, and tornados), and changes in the nature and distribution of transmissible diseases. Vulnerable human settlements will suffer directly, while the resulting population migration will ensure that few regions of the globe are unaffected. It has been suggested that these stresses may also result in conflict including war. Furthermore, the effects of climate change upon health will not be distributed uniformly around the globe. Instead, the greatest health impacts will be felt by those who have contributed the least to the accumulated reservoir of greenhouse gas (GHG) emissions, and for whom access to health care resources is most limited, further exacerbating the health inequalities that exist at a global level between the rich and poor (Costello et al.). In the context of the ongoing debate across the globe regarding models of health care and cost containment, Agar’s article provides a timely reminder that natural resources need to be considered in parallel with human and financial capabilities, and not simply as an afterthought. That the health sector has been slow to recognize the health impacts of climate change has been unfortunate— not least because the very delivery of health care itself results in considerable GHG emissions. The GHG emissions attributable to the National Health Service (NHS) in England alone represent 25% of the carbon footprint of the public sector in the United Kingdom, while 8% of all emissions in the United States derive from health care. It follows, therefore, that health care professionals should not only advocate for global strategies to address climate change but that they must also seek to reduce the emissions of their own medical establishments and practices. As over 65% of the emissions of a typical renal service result from the provision of dialysis, Professor Agar’s projects appear well targeted. In the United Kingdom, the NHS Carbon Reduction Strategy has set targets for the reduction of greenhouse emissions within the NHS. Taking 2007 levels as the baseline, the strategy requires an 80% reduction before 2050 and a 34% reduction as early as 2020. Meeting these challenging targets may well demand that health economists become familiar with the rationing of health care of the basis of carbon as well as financial resources. This should not frighten clinicians as the sustainability and clinical agendas frequently align. Indeed, the former might provide a further lever to achieve the latter. For example, transplantation, arguably the ultimate form of recycling, will surely prove to have a lower environmental impact than dialysis, and preemptive living donor programs will reduce emissions further. Effective carbon rationing within health care would require advances in our understanding of the carbon footHemodialysis International 2012; 16:2–5

Alternative view of CKD and QOF

There is an alternative perspective to Spence’s view that opportunistic screening for chronic kidney disease (CKD) is “bad medicine.”1 Referrals from primary care increased after the introduction of estimated glomerular filtration (eGFR) reporting, with a shift towards more advanced disease—suggesting that those with most to gain from specialist review are now more likely to …

Fluid intake and mortality: drinking in the data

Due to the scale of chronic kidney disease (CKD) [1], management of patients is delivered from a broad range of settings. Research into CKD is often focused towards interventions relevant to the later stages of disease seen in secondary care and can fail to acknowledge the large quantities of clinical input delivered in a community setting. Furthermore, while medical students are still taught a hierarchy of ‘conservative, medical, then surgical treatments’, guidelines for the management of CKD have focused on patient identification and pharmacological treatments [2] with scant data on public health interventions that may help ameliorate the growing problem of this condition at a ‘pre-health-care’ level. In this issue, Strippoli et al. [3] address the received wisdom that drinking increasing amounts of fluid each day is associated with health benefits. This long-standing belief, repeated even in current governmental advice [4], is believed to originate from an opinion statement, made in the absence of robust epidemiological data, by the 1945 US Food and Nutrition Board of the National Research Council [5] recommending a daily fluid intake of 2.5 L. Using information onestimated daily fluid intake obtained as part of the Blue Mountains Eye Study (1992–1994), the authors considered the effect of increased fluid intake (importantly estimated from both fluids and prepared food as stated in the 1945 guidance) in relation to mortality and loss of estimated glomerular filtration rate (eGFR). In a population of 3858 patients with a median follow-up period of 13.1 years, greater volumes of fluid intake were not associated with reduced risk for death when fluid consumption was considered as a continuous variable {hazard ratio for death 0.99 [95% confidence interval (95% CI) 0.98–1.01] per 250 mL increase in total daily fluid intake}, nor when upper and lower quartiles of fluid intake were compared. A similar result was seen in the 1479 patients with multiple measurements of renal function. Here, a non-significant increase in eGFR was associated with increasing daily fluid intake [0.06 mL/min/1.73 m 2 for every 250 mL increase in daily fluid take (95% CI �0.03 to 0.14)].

End-of-life care for people with chronic kidney disease: cause of death, place of death and hospital costs.

Background. End‐of‐life care for people with chronic kidney disease (CKD) has been identified as an area of great clinical need internationally. We estimate causes and place of death and cost of hospital care for people with CKD in England in the final 3 years of life. Methods. Hospital Episode Statistics data were linked to Office for National Statistics mortality data to identify all patients in England aged ≥18 years who died 1 April 2006–31 March 2010, and had a record of hospital care after 1 April 2003 (the study group). The underlying cause and place of death were examined in Office for National Statistics data, for patients without and with CKD (identified by International Classification of Diseases version 10 codes N18, I12 and I13). Costs of hospital admissions and outpatient attendances were estimated using National Health Service Reference Cost data. Associations between CKD and hospital costs, and between place of death and hospital costs in those with CKD, were examined using multivariate regressions. Results. There were 1 602 105 people in the study group. Of these, 13.2% were recorded as having CKD. The proportion of deaths at home was 10.7% in people with CKD and 17.2% in the age‐ and gender‐matched non‐CKD group. Regression analysis suggests that CKD was associated with an increase in hospital costs of £3380 in the last 12 months of life, holding constant place of death, comorbidities and other variables. For the CKD group, home death was associated with a reduction in hospital costs of £2811 in the 12 months before death. The most commonly recorded cause of death in people with CKD was heart disease. CKD was not mentioned on the death certificate in two‐thirds of deaths in people with the condition. Conclusions. People with CKD are less likely to die at home than those without CKD. The condition is associated with increased hospital costs at the end of life regardless of place of death. Home death in CKD is associated with a substantial reduction in hospital costs at the end of life.