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1

Stewart, Simon, and Lynda Blue, eds. Improving Outcomes in Chronic Heart Failure. London, UK: BMJ Publishing Group, 2004. http://dx.doi.org/10.1002/9780470750551.

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2

Kamudoni, Paul, Nutjaree Johns, and Sam Salek. Living with Chronic Disease: Measuring Important Patient-Reported Outcomes. Singapore: Springer Singapore, 2018. http://dx.doi.org/10.1007/978-981-10-8414-0.

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3

Kurt, Banz, ed. Roferon-A in chronic viral hepatitis: Treatment, clinical outcomes, cost-effectiveness. Bern: P. Lang, 1994.

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4

Simon, Stewart, and Blue Lynda, eds. Improving outcomes in chronic heart failure: Specialist nurse intervention from research to practice. 2nd ed. London: BMJ Books, 2004.

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5

Husereau, Donald Robert. Interferon-based therapies for chronic hepatitis C virus infection: An assessment of clinical outcomes. Ottawa: Canadian Coordinating Office for Health Technology Assessment, 2004.

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6

Held, Philip J. Costs, competition, and outcomes in the End-Stage Renal Disease Program. Washington, D.C: Urban Institute, Health Policy Center, 1986.

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7

Rimington, Lesley D. A five year longitudinal outcome study of chronic obstructive pulmonary disease. Salford: University of Salford, 1994.

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8

Friedman, Stefan. Chronic Pain: Prevalence, Management and Outcomes. Nova Science Publishers, Incorporated, 2019.

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9

Beaulieu, Monica, Catherine Weber, Nadia Zalunardo, and Adeera Levin. Chronic kidney disease long-term outcomes. Edited by David J. Goldsmith. Oxford University Press, 2015. http://dx.doi.org/10.1093/med/9780199592548.003.0097.

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Chronic kidney disease (CKD) is associated with a variety of outcomes, some of which are directly and indirectly related to kidney disease, but which ultimately impact on patients’ quality of life and long-term outcomes. The events to which people with CKD are exposed ultimately determine their risk and prognosis of both progression to needing renal replacement therapy, or other morbidities and mortalities. The notion of competing risk is important. The five major outcomes of CKD are: progression of CKD, progression to ESRD (either dialysis or transplantation); death; cardiovascular events; infections; and hospitalizations. Where data is available, not only the risk of the specific outcome, but the factors which may predict those outcomes are described. Each section describes what is currently known about the frequency of the outcome, the limitations of that knowledge, the risk factors associated with outcome, and implications for care and future research. Available published literature often describes outcomes in CKD populations as if it is a homogenous group of patients. But it is well documented that outcomes in those with CKD differ depending on stage or severity, and whether they are or are not known to specialists. Where possible, each section ensures that the specific CKD cohort(s) from which the information is derived is clearly described.
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10

Page, Clive P., Mario Cazzola, and Fernando J. Martinez. Chronic Obstructive Pulmonary Disease: Outcomes and Biomarkers. Taylor & Francis Group, 2009.

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11

Rocco, Lorenzo, Kimie Tanabe, Marc Suhrcke, and Elena Fumagalli. Chronic diseases and labor market outcomes in Egypt. The World Bank, 2011. http://dx.doi.org/10.1596/1813-9450-5575.

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12

Bell, Marcia. Peritoneal Dialysis: Practices, Complications and Outcomes. Nova Science Publishers, Incorporated, 2017.

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13

Chambers, Ruth, and Gill Wakley. Chronic Disease Management in Primary Care: Quality and Outcomes. Taylor & Francis Group, 2018.

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14

Salek, Sam, Paul Kamudoni, and Nutjaree Johns. Living with Chronic Disease: Measuring Important Patient-Reported Outcomes. Adis, 2018.

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15

Chambers, Ruth, and Gill Wakley. Chronic Disease Management in Primary Care: Quality and Outcomes. Taylor & Francis Group, 2018.

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16

Salek, Sam, Paul Kamudoni, and Nutjaree Johns. Living with Chronic Disease: Measuring Important Patient-Reported Outcomes. Adis, 2019.

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17

Chambers, Ruth, and Gill Wakley. Chronic Disease Management in Primary Care: Quality and Outcomes. Taylor & Francis Group, 2018.

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18

Chambers, Ruth, and Gill Wakley. Chronic Disease Management in Primary Care: Quality and Outcomes. Taylor & Francis Group, 2018.

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19

Pearson, Erika. Acute Kidney Injury: Detection, Predictors and Long-Term Outcomes. Nova Science Publishers, Incorporated, 2016.

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20

Chronic Disease Management in Primary Care: Quality And Outcomes (Book With Cd-rom): Quality And Outcomes. Not Avail, 2005.

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21

(Contributor), Khalid Ashai, William Cohn (Contributor), Matthew Forrester (Contributor), Kelly Guglielmi (Contributor), Charles Herzog (Contributor), Rosemary Kelly (Contributor), Rakhi Khanna (Contributor), et al., eds. Cardiac Surgery in Chronic Renal Failure: Clinical Management and Outcomes. Blackwell Publishing Limited, 2007.

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22

Tartasky, Donna Sue. THE RELATIONSHIPS AMONG COPING, HARDINESS AND OUTCOMES OF MULTIPLE CHRONIC ILLNESSES IN THE ELDERLY (ILLNESS OUTCOMES). 1990.

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23

Upadhyay, Ashish, Lesley A. Inker, and Andrew S. Levey. Chronic kidney disease. Edited by David J. Goldsmith. Oxford University Press, 2015. http://dx.doi.org/10.1093/med/9780199592548.003.0094.

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The conceptual model, definition, and classification of chronic kidney disease (CKD) were first described in the National Kidney Foundation’s Kidney Disease Outcomes Quality Initiative (KDOQI) guidelines in 2002 and have had a major impact on patient care and research. Since this publication there has been an increased recognition that the cause of CKD influences progression and complications. In addition, epidemiologic reports from diverse populations have consistently shown graded relations between higher albuminuria and adverse kidney outcomes and complications, in addition to, and independent of, low GFR. Given these new understanding in risk relationships, Kidney Disease Improving Global Outcomes (KDIGO) updated the original guidelines in 2012. The updated guidelines retain the KDOQI definition of CKD, but recommend classifying CKD by the cause, level of GFR, and level of urinary albumin to creatinine ratio. Specialized nephrology care is recommended for severe reduction in GFR or high albuminuria, uncertain diagnosis, or difficult to manage complications.
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24

van Tubergen, Astrid, and Robert Landewé. Clinical outcomes. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780198734444.003.0012.

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In general, axial spondyloarthritis (axSpA) follows a chronic course, requiring regular medical care and monitoring. The outcome of axSpA may vary substantially due to heterogenic presentation. For both research and clinical practice, it is important to have relevant, reliable, validated instruments for measuring outcome, to evaluate patients in a standardized way and capture all disease aspects. The Assessment in SpondyloArthritis international Society has developed core sets and instruments to measure these domains, and recommends only the most important domains being measured with best available methods. This chapter provides an overview of the most important outcomes in axSpA and most commonly used instruments to measure these. Additional measures frequently used but not (yet) included in the core set are addressed, and several sets of response criteria applied in axSpA research described. This chapter also provides guidance in which setting (research versus practice) and with which frequency these measures can be used.
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25

Ash, Simon A., and Donal J. Buggy. Outcomes of anaesthesia. Edited by Philip M. Hopkins. Oxford University Press, 2017. http://dx.doi.org/10.1093/med/9780199642045.003.0039.

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Prevailing attitudes and conviction maintain that anaesthetic management, while ensuring safety, analgesia, and comfort perioperatively, has little influence on long-term patient outcomes. Gradually accumulating evidence is challenging this conventional wisdom, suggesting that choice of anaesthetic technique and perioperative management may, on the contrary, exert previously unrecognized long-term influences. This chapter seeks to review topical aspects of anaesthesia management which may influence postoperative patient outcomes. These include cardiovascular and pulmonary outcomes, surgical site infection, blood transfusion, perioperative glycaemic control, cancer recurrence, the development of chronic persistent pain, and postoperative cognitive dysfunction.
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26

LaBresh, Kenneth A. Improving Outcomes: For Noncommunicable Diseases in Low- and Middle-Income Countries. RTI International / RTI Press, 2016.

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27

Minden, Kirsten. Outcomes of paediatric rheumatic disease. Oxford University Press, 2013. http://dx.doi.org/10.1093/med/9780199642489.003.0035.

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Paediatric rheumatic illnesses are among the most common chronic diseases in children and adolescents. These illnesses have important impacts on patient's body functions and structures, activities, and social participation. Knowledge about the effect and consequences of these diseases is necessary to formulate appropriate aims of treatments. The multidimensional outcomes of paediatric rheumatic diseases and their measurement are reviewed in this chapter. Outcome measurement is complex in patients who have growing needs and changing expectations as they develop, especially in chronic conditions that have a variable and often unpredictable course, such as juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, and juvenile dermatomyositis. Considerable work has been conducted recently in an effort to better define and value global outcomes for these patients. New and reliable outcome measures have been developed to capture all aspects of the patient's life and integrate the patients' perspective. Existing outcome studies of paediatric rheumatic diseases have consistently shown, even though differing in their methodology, that patient outcomes have improved over the last decade. More patients with chronic inflammatory rheumatic conditions survive into adulthood, and patients' long-term health, functional, and quality of life outcomes have improved. However, outcomes are still less than ideal. More than one-half of the patients with paediatric rheumatic diseases have ongoing active disease in early adulthood. Over one-third have evidence of disability and organ damage, with each underlying disease being associated with specific complications. Clearly, given the inherent potential for disability, morbidity, even mortality, young people with paediatric-onset rheumatic diseases require ongoing medical care into adulthood.
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28

Minden, Kirsten. Outcomes of paediatric rheumatic disease. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780199642489.003.0035_update_002.

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Paediatric rheumatic illnesses are among the most common chronic diseases in children and adolescents. These illnesses have important impacts on patient’s body functions and structures, activities, and social participation. Knowledge about the effect and consequences of these diseases is necessary to formulate appropriate aims of treatments. The multidimensional outcomes of paediatric rheumatic diseases and their measurement are reviewed in this chapter. Outcome measurement is complex in patients who have growing needs and changing expectations as they develop, especially in chronic conditions that have a variable and often unpredictable course, such as juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, and juvenile dermatomyositis. Considerable work has been conducted recently in an effort to better define and value global outcomes for these patients. New and reliable outcome measures have been developed to capture all aspects of the patient’s life and integrate the patients’ perspective. Existing outcome studies of paediatric rheumatic diseases have consistently shown, even though differing in their methodology, that patient outcomes have improved over the last decade. More patients with chronic inflammatory rheumatic conditions survive into adulthood, and patients’ long-term health, functional, and quality of life outcomes have improved. However, outcomes are still less than ideal. More than one-half of the patients with paediatric rheumatic diseases have ongoing active disease in early adulthood. Over one-third have evidence of disability and organ damage, with each underlying disease being associated with specific complications. Clearly, given the inherent potential for disability, morbidity, even mortality, young people with paediatric-onset rheumatic diseases require ongoing medical care into adulthood.
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29

Minden, Kirsten. Outcomes of paediatric rheumatic disease. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780199642489.003.0035_update_003.

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Paediatric rheumatic illnesses are among the most common chronic diseases in children and adolescents. These illnesses have important impacts on patient’s body functions and structures, activities, and social participation. Knowledge about the effect and consequences of these diseases is necessary to formulate appropriate aims of treatments. The multidimensional outcomes of paediatric rheumatic diseases and their measurement are reviewed in this chapter. Outcome measurement is complex in patients who have growing needs and changing expectations as they develop, especially in chronic conditions that have a variable and often unpredictable course, such as juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, and juvenile dermatomyositis. Considerable work has been conducted recently in an effort to better define and value global outcomes for these patients. New and reliable outcome measures have been developed to capture all aspects of the patient’s life and integrate the patients’ perspective. Existing outcome studies of paediatric rheumatic diseases have consistently shown, even though differing in their methodology, that patient outcomes have improved over the last decade. More patients with chronic inflammatory rheumatic conditions survive into adulthood, and patients’ long-term health, functional, and quality of life outcomes have improved. However, outcomes are still less than ideal. More than one-half of the patients with paediatric rheumatic diseases have ongoing active disease in early adulthood. Over one-third have evidence of disability and organ damage, with each underlying disease being associated with specific complications. Clearly, given the inherent potential for disability, morbidity, even mortality, young people with paediatric-onset rheumatic diseases require ongoing medical care into adulthood.
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30

Herrington, William G., Aron Chakera, and Christopher A. O’Callaghan. Chronic kidney disease. Edited by Patrick Davey and David Sprigings. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780199568741.003.0163.

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Chronic kidney disease (CKD) is defined as abnormalities of kidney structure or function, where the abnormalities have been present for >3 months and have implications for health. It is characterized by a reduced estimated glomerular filtration rate (eGFR) or other renal abnormalities. CKD is staged according to the eGFR or the degree of albuminuria. The KDIGO (Kidney Disease: Improving Global Outcomes) criteria for CKD is either an eGFR that is <60 ml/min 1.73 m−2 and has been present for >3 months, or one or more markers of kidney damage, when these have been present for >3 months.
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31

Chiara, Nosarti, Murray, Robin, MD, M Phil, MRCP, MRC Psych., and Hack Maureen, eds. Neurodevelopmental outcomes of preterm birth. Cambridge: Cambridge University Press, 2010.

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32

Blue, Lynda, and Simon Stewart. Improving Outcomes in Chronic Heart Failure: A Practical Guide to Specialist Nurse Intervention. Wiley & Sons, Incorporated, John, 2008.

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33

Stewart, Simon, and Lynda Blue. Improving Outcomes in Chronic Heart Failure: Specialist Nurse Intervention from Research to Practice. 2nd ed. Blackwell Publishing Limited, 2004.

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34

Blue, Lynda, and Simon Stewart. Improving Outcomes in Chronic Heart Failure: A Practical Guide to Specialist Nurse Intervention. Wiley & Sons, Limited, John, 2007.

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35

Blue, Lynda, and Simon Stewart. Improving Outcomes in Chronic Heart Failure: A Practical Guide to Specialist Nurse Intervention. Wiley & Sons, Incorporated, John, 2008.

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36

(Editor), Simon Stewart, and Lynda Blue (Editor), eds. Improving Outcomes in Chronic Heart Failure: A Practical Guide to Specialist Nurse Intervention. 3rd ed. Bmj Publishing Group, 2001.

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37

Stewart, Simon, and Lynda Blue. Improving Outcomes in Chronic Heart Failure: A Practical Guide to Specialist Nurse Intervention. Bmj Publishing Group, 2001.

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38

Mueller, Kathryn, Randy Lea, and Dongchun Wang. Outcomes Associated with Manual Therapy for Workers with Non-Chronic Low Back Pain. Workers Compensation Research Institute, 2021.

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39

Hough, Catherine L. Chronic critical illness. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780199600830.003.0377.

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Chronic critical illness (CCI) is common and describes a state of prolonged critical illness, in which patients have persisting organ failures requiring treatment in an intensive care setting. There are many different definitions of CCI, with most including prolonged (> 96 hours) mechanical ventilation. Advanced age, higher severity of illness, and poor functional status prior to critical illness are all important risk factors, but prediction of CCI is imperfect. Although requirement for mechanical ventilation is the hallmark, CCI encompasses much more than the respiratory system, with effects on metabolism, skin, brain, and neuromuscular function. During CCI, patients have a high burden of symptoms and impaired capacity to communicate their needs. Mortality and quality of life are generally poor, but highly variable, with 1-year mortality over 50% and most survivors suffering permanent cognitive impairment and functional dependence. Patients at highest and lowest risk for mortality can be identified using a simple prediction rule. Caring for the chronically critically ill is a substantial burden both to patients’ families and to the health care system as a whole. Further research is needed in order to improve care and outcomes for CCI patients and their families.
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40

Narsavage, Georgia Roberts. THE RELATIONSHIP OF PHYSIOLOGICAL STATUS, COPING, AND HARDINESS TO PATIENT OUTCOMES IN CHRONIC ILLNESS. 1990.

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41

Charron-Prochownik, Denise. SOCIAL SUPPORT, CHRONIC STRESS, AND HEALTH OUTCOMES IN ADOLESCENTS WITH DIABETES (STRESS, DIABETES MELLITUS). 1991.

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42

Huang, Haijing. Improving Health Decisions and Outcomes for Chronic Diseases: The Impact of Incentives and Information. RAND Corporation, 2018. http://dx.doi.org/10.7249/rgsd421.

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43

Newton-John, Toby. Multidisciplinary cognitive behavioural treatment for chronic pain. Edited by Paul Farquhar-Smith, Pierre Beaulieu, and Sian Jagger. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780198834359.003.0075.

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The landmark paper discussed in this chapter is ‘Evaluation of a cognitive behavioural programme for rehabilitating patients with chronic pain’, published by Williams et al. in 1993. This article represents the first extensive evaluation of multidisciplinary cognitive behavioural therapy (commonly abbreviated as CBT) for chronic pain conducted in the UK. Back in 1993, evidence was accumulating in the US which supported group-based pain management programmes, but it was not clear whether those results would translate to the different pain populations found in Britain. The study used multiple domains of assessment, including psychometric measures, measures of physical function, and pain medication reduction. As the first of its kind in the UK, this remains an important study, not just for its originality, but for the rigour with which outcomes were evaluated and the novel process and outcome assessments employed.
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44

Pieczynski, Jessica, Sarah Thilges, Leland Bardsley, and Tamara Goldman Sher. Relationships and Chronic Medical Problems. Edited by Erika Lawrence and Kieran T. Sullivan. Oxford University Press, 2014. http://dx.doi.org/10.1093/oxfordhb/9780199783267.013.004.

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This chapter provides an overview of the research on the reciprocal nature of illness and couple functioning. The chapter begins with a summary of the psychosocial literature, providing the context in which couples navigate illness, followed by a review of intermediate pathways through which relationship satisfaction and chronic illness interact. The chapter underscores the notion that chronic illness and couple functioning must be understood as a reciprocal, longitudinal feedback loop by highlighting the numerous couple and health processes that are interacting with each other over time to influence patient, partner, and health outcomes. Future directions and clinical implications are discussed.
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45

National Academies of Sciences, Engineering, and Medicine. Permanent Supportive Housing: Evaluating the Evidence for Improving Health Outcomes among People Experiencing Chronic Homelessness. National Academies Press, 2018.

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46

Affairs, Policy and Global, Board on Population Health and Public Health Practice, National Academies of Sciences, Engineering, and Medicine, Health and Medicine Division, and Science and Technology for Sustainability Program. Permanent Supportive Housing: Evaluating the Evidence for Improving Health Outcomes among People Experiencing Chronic Homelessness. National Academies Press, 2018.

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47

Wald, Ron, and Ziv Harel. The Long-Term Outcomes of Acute Kidney Injury. Oxford University Press, 2014. http://dx.doi.org/10.1093/med/9780199653461.003.0015.

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Recent research has provided important insights on the long-term outcomes of patients who develop acute kidney injury (AKI) in the setting of critical illness. Large epidemiologic studies have demonstrated compelling associations between episodes of AKI and progressive kidney disease and death, respectively, although such studies do not establish causality due to the potential for confounding. Whether AKI is intrinsically toxic or a mere by-product of serious comorbidities (e.g. prior chronic kidney disease, heart failure, diabetes), there is no doubt that AKI survivors are a high-risk group who would likely benefit from close post-discharge follow-up. Recent studies have shown that a minority of patients with AKI receive specialized nephrology follow-up after discharge, suggesting an opportunity for quality improvement. Emerging research is evaluating factors that predict chronic kidney disease, end-stage renal disease, and death among AKI survivors. This work will, it is hoped, suggest new targets for prevention and treatment, with the goal of enhancing the likelihood of recovery following AKI.
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48

Lameire, Norbert. Renal outcomes of acute kidney injury. Edited by Norbert Lameire. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780199592548.003.0238_update_001.

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This chapter summarizes the accumulating evidence that incomplete or even apparent complete recovery of renal function after acute kidney injury (AKI) may be an important contributor to a growing number of incident chronic kidney disease (CKD) and end-stage renal disease (ESRD) cases, largely in excess of the global growth in CKD prevalence. Evidence based on epidemiologic studies supports the notion that even after adjustment for several important covariates AKI is independently associated with an increased risk for both CKD and ESRD. Several risk factors for the subsequent development of CKD among survivors of AKI have been identified. Besides well-known risk factors for CKD in general, such as hypertension, older age, congestive heart failure, diabetes, and proteinuria, AKIN staging and duration also predict longitudinal CKD development. These characteristics may identify a category of at-risk AKI patients at the time of hospital discharge that will need long follow-up times for appropriate screening and surveillance measures for CKD.
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49

Stewart, Alex G., Sam Ghebrehewet, and Richard Jarvis. Cancer and chronic disease clusters. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780198745471.003.0017.

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Clusters of disease are often reported to health protection and a finger pointed at a nearby environmental hazard that is thought to be the cause. There is an expectation that the causal linkage will be clarified and action taken to alleviate the resulting anxiety and stop further ill health. Not all reported clusters are real, but all are worth some level of investigation to alleviate anxiety. However, investigating such clusters is not easy. Neither is investigating causal linkages to environmental issues. Using an example of childhood cancer and contaminated land, this chapter takes a stepwise, structured approach to the investigation, defining realistic outcomes and clear criteria to stop such an investigation. The vital role of a multi-agency incident team to integrate health studies and environmental investigations is explored. Readers will be able to undertake such investigations for themselves across a wide range of putative clusters of chronic diseases.
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50

Goldsmith, David J. Cardiovascular disease and chronic kidney disease. Edited by David J. Goldsmith. Oxford University Press, 2015. http://dx.doi.org/10.1093/med/9780199592548.003.0098.

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Even after as full a statistical adjustment as can be made for traditional cardiovascular risk factors has been undertaken, impaired kidney function and raised concentrations of albumin in urine each increase the risk of cardiovascular disease (CVD) by two- to fourfold, the degree increasing with severity. If the patient is also suffering from diabetes (as either the cause of CKD or a complication of it), the risks of CVD increase two- to fourfold again. CKD patients should, therefore, be acknowledged as having perhaps the highest cardiovascular risk of any patient cohort. CVD is underdiagnosed and undertreated in these patients. In early CKD the manifestations of CVD are similar to those of other patients. In late CKD and particularly in patients on dialysis the epidemiology is different. Left ventricular hypertrophy is very common and sudden cardiac death is greatly increased in incidence. Heart failure is a common complication. Calcification of valves and vessels becomes increasingly common and bad CVD outcomes are associated with hyperphosphataemia and other manifestations. The mechanisms by which risks are increased are not fully understood. The evidence base for the effectiveness of established therapies for CVD is relatively light in patients with CKD, but there is evidence for benefit of lipid-lowering therapies and most nephrologists believe that blood pressure and volume control are important for good long-term outcomes. Evidence of impact on CVD of interventions to alter mineral bone disease is disappointingly weak.
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