Kidney Disease Management E-Book

• Herausgeber: John Wiley & Sons
• Kategorie: Fachliteratur
• Sprache: Englisch

Seitenzahl: 432

Veröffentlichungsjahr: 2012

Beschreibung

Kidney Disease Management

“This informative book has been put together with the support and input of many clinical renal experts, who have been willing to share their knowledge and years of experience and I’m sure it will be an excellent resource for those caring for kidney patients for the first time – as well as for those with some years of experience!”

From the Foreword by Rosemary Macri, Chief Executive of the British Kidney Patient Association

Kidney Disease Management: A Practical Approach for the Non-Specialist Healthcare Practitioner has been written to help optimise the care of people with chronic kidney disease (CKD) across the healthcare spectrum. It is aimed at a range of professionals, including nurses, junior doctors, general practitioners, pharmacists and dietitians. Specialists in training may also find it useful. It highlights the practical considerations necessary to care for people with kidney problems in situations where a specialist practitioner is not always required or immediately available.

This book explores policy context and CKD, overview of CKD and management, managing CKD in primary care, treatment modalities in CKD, psychosocial aspects of living with CKD, acute kidney injury in hospitalised patients, surgery and kidney injury, medication management in CKD, nutrition and CKD, and support and palliative care for people with CKD.

Key features:

• Based on best practice and written in an accessible format aimed at busy practitioners
• Emphasises the centrality of the patient and family and the need to share information and expertise across traditional boundaries
• Written by professionals renowned in their field, both generalists and specialists, who have extensive experience of the practicalities of managing complex patients

Leseprobe

Contents

Contributors

Foreword: David Colin-Thomé

Foreword: Rosemary Macri

Introduction Managing Patients with Chronic Kidney Disease in Non-Specialist Areas: a Chronic Illness Approach

Reasons for writing the book

1. Managing Chronic Conditions: The Policy Context

2. What Non-Specialists Need to Know about Chronic Kidney Disease

3. A Practical Approach to Chronic Kidney Disease in Primary Care

4. General Considerations Related to Treatment Modalities

5. Psychosocial Aspects of Living with Chronic Kidney Disease

6. Acute Kidney Injury in Hospitalised Patients

7. Management of Patients with or at Risk of Kidney Disease on the Surgical Ward

8. Medication Management and Chronic Kidney Disease

9. Optimising Nutrition in People with Chronic Kidney Disease

10. Supportive and Palliative Care for Patients with Advanced Kidney Disease

Conclusion

Chapter 1 Managing Chronic Conditions: The Policy Context

Introduction

Chronic kidney disease in context

The policy context

The role of primary-care-based integrated teams

From theory to the frontline

Care or management plans

Conclusion

Chapter 2 What Non-Specialists Need to Know about Chronic Kidney Disease

Introduction

Wider manifestations of CKD

Renal replacement therapy

Features of advanced CKD and general aspects of management

Haemodialysis

Peritoneal dialysis

Kidney transplantation

Conclusion

Chapter 3 A Practical Approach to Chronic Kidney Disease in Primary Care

Introduction

Joined-up working – the key to success

Should I screen for CKD?

Should I tell patients they have CKD?

How do I identify patients who are likely to be troubled by their kidney disease?

Which patients should I refer to a nephrologist?

Monitoring kidney function – the power of the eGFR graph

Making sense of variation in eGFR

Misleading estimates of GFR

What does proteinuria mean?

Management of patients with CKD

Blood pressure – the number one priority

Healthy living, healthy kidneys

How can I use ACE inhibitors and ARBs safely?

Systematic care of the CKD population

Management of CKD patients who become unwell

Management of patients with CKD stages 4 and 5

Older patients with CKD

Patients with a kidney transplant

Conclusions

Acknowledgements

Chapter 4 General Considerations Related to Treatment Modalities

Introduction

Referral

Variation and inequity in the use of different RRT modalities

Empowering patients to make an informed choice: shared decision making

Choice of RRT modality

Factors influencing decision making

Cognitive impairment and lack of mental capacity

Options

Timing of start

Peritoneal dialysis

Common complications and treatments

Haemodialysis, haemofiltration and haemodiafiltration

Transplantation

Conservative care

Survival

Health-related quality of life

Withdrawal from RRT

Effective use of limited resources

Conclusions

Chapter 5 Psychosocial Aspects of Living with Chronic Kidney Disease

Introduction

Coping with diagnosis and encouraging acceptance

Impact on family, social life and work

Coping with dialysis treatment

Transplant issues

End-of-life issues

Specialist support services

Conclusion: patient journeys

Author’s note

Chapter 6 Acute Kidney Injury in Hospitalised Patients

Introduction

What is ‘elderly’?

Physiology of ageing

Terminology

Definition of acute kidney injury

Aetiology and outcome

Approach to the patient

Physical examination

Acute or chronic kidney disease?

Management and prevention

Prognosis

When to escalate care

Advance care plans and advance decisions to refuse treatments

Lasting power of attorney

Conclusion

Chapter 7 Management of Patients with or at Risk of Kidney Disease on the Surgical Ward

Introduction

Patient population

Recognising kidney injury

Adverse consequences of kidney injury on hospital survival

Risk factors for perioperative kidney injury

Our index case

Impact of surgery on kidney function

Impact of CKD on standard protocols

Special considerations

Medication management

Patients on dialysis

Renal transplant patients

Conservative care

Scenarios

Conclusion

Chapter 8 Medication Management and Chronic Kidney Disease

Introduction

Measurement of renal impairment

Principles of drug dosing in renal impairment

Acute kidney injury

Medication used in CKD

Concordance

Transplantation and immunosuppression

Over-the-counter and complementary therapies

Conclusion

Chapter 9 Optimising Nutrition in People with Chronic Kidney Disease

Introduction

Specialist dietitians

CKD and healthy eating

Diabetes

Hypertension

Obesity

Nutrients

Fluid

Vitamins and minerals

Acidosis and nutrition

Haemodialysis

Peritoneal dialysis

Transplant

Malnutrition, nutritional assessment and intervention

Conclusion

Chapter 10 Supportive and Palliative Care for Patients with Advanced Kidney Disease

Introduction

Background

Identifying patients with CKD approaching the end of life

Managing care

Terminology

Patient population

Deciding whether to dialyse or not – a supported decision

Withdrawing from dialysis

Patients on long term dialysis whose general health is in persistent decline

Aims of care management

End-of-life care tools

Care in the last few days/hours of life and after death

Rapid access to care

Delivery of high-quality care across all locations

Involving and supporting carers

Practical issues

Clinical management

Symptom management

Conclusion

Index

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Library of Congress Cataloging-in-Publication Data

Kidney disease management : a practical approach for the non-specialist healthcare practitioner / [edited by] Rachel Lewis, Helen Noble.p. ; cm.Includes bibliographical references and index.

ISBN 978-0-470-67061-3 (pbk.)I. Lewis, Rachel, 1965– II. Noble, Helen, 1964–[DNLM: 1. Kidney Diseases. 2. Chronic Disease–therapy. 3. Renal Insufficiency, Chronic. WJ 300]616.6′1–dc23

2012032765

A catalogue record for this book is available from the British Library.

Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books.

Cover design by: Steve Thompson

Contributors

David Colin-ThoméDr David Colin-Thomé is an independent healthcare consultant and former general practitioner at Castlefields in Runcorn. He also spent several years as the National Clinical Director of Primary Care and clinical lead for the ­long-term conditions programme, Department of Health, England.

Emma Coyne BSc(Hons), ClinPsyDDr Emma Coyne is a clinical psychologist working within the adult renal unit at Nottingham University Hospitals NHS Trust. She is particularly interested in improving psychological care using compassion-based interventions. She also has a special interest in improving services and provision for young adults with CKD.

Indranil Dasgupta MBBS, MD, DM, FRCPIndranil Dasgupta is a consultant physician and nephrologist at Birmingham Heartlands Hospital and honorary senior lecturer at the School of Clinical and Experimental Medicine, University of Birmingham. His main areas of interests are hypertension, chronic kidney disease, pre-dialysis care and renal bone ­disease.

Jeanette Denning RGNJeanette Denning is a senior sister in peritoneal dialysis and pre-dialysis ­pathway at the Leeds Teaching Hospitals NHS Trust.

Aileen Dunleavy MRPharmS (Ipresc)Aileen Dunleavy is senior renal pharmacist at Crosshouse Hospital, Kilmarnock. She is co-editor of the Renal Drug Handbook and has been a renal pharmacist for 18 years. She is a pharmacy prescriber and has an interest in the management of anaemia.

Aisha I. Geeson MBChB, MRCPDr Aisha Geeson graduated from Dundee Medical School in 2006 and has worked in Edinburgh, Swansea and Bristol. She is currently a specialist registrar in renal medicine at Southmead Hospital, Bristol, having developed her interest in renal medicine while working in Morriston Hospital, Swansea.

Keith Harkins MBChB, MRCPDr Keith Harkins is a consultant physician and geriatrician at Wythenshawe Hospital, University Hospital of South Manchester. Within elderly care Dr Harkins is particularly interested in rehabilitation, continence and end-of-life care.

Maggie Higginbotham BSc (Hons)Maggie Higginbotham is a renal specialist nurse currently working as clinical educator in York Renal Services. She qualified as a registered nurse in 1987, and began renal nursing in 1988 at St James’s Hospital, Leeds, before moving to York Renal Services in 1999. She has recently completed a BSc in healthcare practice at the University of Leeds. Maggie is passionate about providing a high standard of multi-professional care to renal patients and their families and has a keen interest in ‘user involvement’.

Rachel Hilton MA, PhD, FRCPDr Rachel Hilton received her BA at the University of Oxford in 1985 (physiological sciences) and her BM BCh in 1988. She has been a consultant nephrologist at Guy’s and St Thomas’ NHS Foundation Trust since 1999, and was lead ­clinician in nephrology between 2003 and 2008. She has held an honorary appointment in the School of Medicine at King’s College London since 2006. She is currently R&D theme lead for transplantation and medical lead in transplantation. Dr Hilton is interested in renal transplantation, living kidney donation, viral infection after transplantation, autoimmune diseases, renal disease in pregnancy and renal disease in patients with human immunodeficiency virus.

Helena Jackson BSc (Hons), PgDip, MSc, RDHelena Jackson is a renal dietitian at St George’s Hospital, London. She has worked as a renal dietitian since 1995 in all areas of renal dietetics, from enteral and parenteral feeding to optimising patient motivation and understanding of diet. She is the co-author of two books on diet for patients with chronic kidney disease.

Sheila Johnston RN, MSc, BScSheila Johnston is the lead nurse, clinical lead in chronic kidney disease (CKD) at the Royal Free London NHS Foundation Trust. She has been working within the renal specialty since 1995 and moved into specialist practice in CKD in 2003. She has a particular interest in the supportive and palliative care needs of those patients opting not to have dialysis, and in further developing shared decision making in this group to enhance their end-of-life care.

Colin H. Jones MBChB, MD, FRCP, MEd (ClinEd)Dr Colin Jones is a consultant physician and nephrologist at York Teaching Hospital NHS Foundation Trust. He qualified in 1988 (University of Birmingham), was awarded a Doctor of Medicine degree in 1999 (University of Birmingham) and a Master’s in Education in 2008 (University of Leeds). He strongly believes in providing holistic patient-centred care delivered through evidence-based medicine and supported by robust audit and governance mechanisms. He is actively involved in clinical research and in undergraduate and postgraduate education.

Lesley Lappin, RN, BSc (Hons), MScLesley Lappin is a clinical nurse specialist and community dialysis lead at Salford Royal NHS Foundation Trust. She has worked in kidney care for 23 years and is the nursing lead for the peritoneal dialysis service at Salford Royal Hospital. In 2010 she was awarded a Kidney Research/BRS joint fellowship and is studying for a doctorate in quality improvement sustainability.

David Lewis MBChB, MD, FRCPDr David Lewis is a nephrologist and general physician. He is the clinical lead for peritoneal dialysis at Salford Royal NHS Foundation Trust and has a particular interest in multidisciplinary working.

Rachel Lewis RN, RSCN, MSc, MA (Econ), BA (Hons)Rachel Lewis is a nurse practitioner at Manchester Business School engaged in health services research in general practice. She previously worked as a community matron and is interested in care integration and service delivery for people with multiple chronic conditions. She has spent many years working in adult and children’s renal services, and worked for several years as a nurse adviser to the Department of Health, working with the renal and pathology policy teams.

Rosemary MacriRosemary Macri is the Chief Executive of the British Kidney Patient Association (BKPA). Rosemary first worked with the BKPA in 1977 and became a personal assistant to the founder president. Following a break to pursue other opportunities she returned to the charity in 2002, and in 2008 became its Chief Executive. The BKPA provides advice, support and financial help for people with kidney disease.

Beverley Matthews RNBeverley Matthews is the director of NHS Kidney Care and Liver Care. Originally a nurse, she has worked for many years in renal services as a transplant coordinator and a network manager. NHS Kidney Care aims to improve the outcomes for people with kidney disease, and achieves this by helping to embed evidence-based innovations in everyday practice.

Helen Noble RN, PhD, BSc, PG Dip Academic PracticeDr Helen Noble is a lecturer in Health Services Research at Queen’s University Belfast. Previously she worked as a ward manager, matron and then as a senior clinical nurse specialist involved in setting up one of the first renal palliative and supportive care programmes in the UK. She has research expertise in nephrology nursing, particularly related to those who opt not to embark on dialysis, and their carers, and is interested in developing interventions to support this group.

Sally Noble APD, BASally Noble has worked as a specialist renal dietitian in both Australia and the United Kingdom. She is currently working as a senior renal/diabetes dietitian in Brisbane, Australia. She is interested in promoting healthy balanced diets for people with kidney disease to prevent and manage their condition, as well as investigating ways to screen and manage patients with poor nutrition.

Rajib Pal MBChB, MRCGP, MRCP, DCH, DRCOG, PG Cert (Med Ed)Dr Rajib Pal is a general practitioner in Birmingham. He is a GP trainer, ­foundation year 2 supervisor, undergraduate tutor and vascular and research lead clinical lead for stroke. He is also a member of the NICE Guideline Development Group for Acute Kidney Injury, and of the Department of Health Acute Kidney Injury Delivery Group.

Hugh Rayner MA, MBBS, MD, FRCP, DipMedEdDr Hugh Rayner is a consultant nephrologist at the Heart of England NHS Foundation Trust and clinical lead for the West Midlands Renal Network. He is interested in improving the care of people with all stages of chronic kidney disease and has a long-standing research interest in clinical nephrology, especially through the Dialysis Outcomes and Practice Patterns Study (www.dopps.org).

Charles R. V. Tomson MA, BM, BCh, FRCP, DMDr Charlie Tomson is a consultant nephrologist at Southmead Hospital, Bristol. He is primarily a clinician and has worked on clinical practice guidelines for the Renal Association, Royal College of Physicians, KDIGO and ERBP. He is interested in quality improvement in kidney care – how to spread the adoption of best practice, and how to support shared decision making in the care of patients with kidney disease.

Graham Woodrow MBChB, MD, FRCPDr Graham Woodrow is a consultant nephrologist at St James’s University Hospital, Leeds Teaching Hospitals NHS Trust. He has particular interests in peritoneal dialysis, nutrition and body composition analysis in renal disease, and in the management of diabetic renal disease.

Foreword

This is a succinct, comprehensive and well-written book covering optimal care for people with kidney disease across the healthcare system. There is much here for the specialist and generalist, with the focus on the individual patient. What is generally lacking in the NHS is a systematic focus on and accounting to the patient. Similarly, there is a great deal of rhetoric about integration, but unless it produces a transparently better service for individual patients it will simply be yet another word in the bureaucratic lexicon. This publication adeptly addresses that system-wide deficit.

Care for people with kidney disease has, until recently, received insufficient attention compared with other acute and chronic conditions. There are, as ever, excellent exemplars of optimal care – but rarely across the whole system of care. For instance, the increasing challenge of managing metabolic syndrome has only relatively recently been recognised as a system-wide issue, particularly in primary care. To date, the development of locally based, ­community-focused integrated services, with improved access for people with the spectrum of acute and chronic kidney problems, has not been high enough in the list of local priorities.

This book is much needed and timely, given the opportunities offered by the prioritising of long-term conditions, by a future of clinicians influencing and/or leading commissioning, and by a growing focus on clinical and patient-reported outcomes.

Congratulations to the editors and contributors. This is a good educative read for clinicians and non-clinicians alike, addressing the issues that often prevent the system-wide improvement of care. It also incidentally serves as an excellent template for publications on other long-term conditions.

Dr David Colin-ThoméIndependent Healthcare Consultant, UK

Foreword

How much easier it would be for health professionals if patients presented with just one disease! Sadly, we all know this is rarely the case, and with long-term conditions such as chronic kidney disease there are often many associated comorbidities influencing outcomes – particularly with growing numbers of elderly patients.

It’s refreshing to see a book like this providing an invaluable source of knowledge and understanding about the management of kidney disease for non-specialist professionals including nurses, junior doctors, general practitioners, pharmacists and dietitians. No one can be an expert in every field, but it’s important to know where to find expert opinion and advice.

This informative book has been put together with the support and input of many clinical renal experts, who have been willing to share their knowledge and years of experience, and I’m sure it will be an excellent resource for those caring for kidney patients for the first time – as well as for those with some years of experience.

Each chapter is informed by patient and family perspectives and adds a valuable practical insight into what it’s like to live with kidney disease and how it impacts on daily life and families. These may be particularly useful for service design and care planning.

The British Kidney Patient Association supports local and national initiatives that improve the care and quality of life for kidney patients around the UK. I feel sure that this new information resource will help achieve these aims by enabling optimal management of patients with chronic kidney disease, encouraging improved development of personal care plans and enabling more patient choice.

Rosemary MacriBritish Kidney Patient Association, UK

Introduction

Managing Patients with Chronic Kidney Disease in Non-Specialist Areas: a Chronic Illness Approach

Rachel Lewis

Manchester Business School, The University of Manchester, UK

Reasons for writing the book

The purpose of this book is to help optimise the management of patients with chronic kidney disease (CKD) across the healthcare spectrum. It is aimed at a number of non-specialist professionals including nurses, junior doctors, ­general practitioners, pharmacists and dietitians. It includes a number of health states and settings in which people with kidney disease are managed. In contrast to many other publications on chronic disease management, this book emphasises the multiplicity of influences on ill health and illustrates the necessity to focus on the needs of the individual, particularly within systems of care.

Many patients with established or deteriorating kidney disease will be man­aged by a specialist team, and this book is not intended to negate the need for specialist renal services. Instead, it highlights some practical considerations necessary to care for people with kidney problems in situations where a specialist practitioner is not always required or may not be immediately available. It provides some general principles for safe and effective care in a number of situations and settings and provides guidance on circumstances in which a specialist should be contacted. It is written by clinical staff and reflects their experiences of managing CKD. It also reflects a number of patient and family narratives, a perspective often obscured by the immediacy of acute settings. In the same way that patients are individuals, so too are healthcare staff; consequently the book includes a number of professional perspectives and styles intended to appeal to a team approach to care management. The book is written in an accessible format, aimed at busy professionals, and cites key material for further information.

1. Managing Chronic Conditions: The Policy Context

Beverley Matthews

The ageing population and the rising incidence and prevalence of chronic conditions suggest that the current organisation of health services within the National Health Service (NHS) is unsustainable. A major driver of costs within the present system is the population dependence on acute care. In response, recent healthcare policy has been directed at reducing the number of hospital beds and moving care for people with chronic conditions into the community. Historically, people with kidney disease have been cared for in different settings, partly because oflimited capacity on renal wards, but often because they have required other services such as rehabilitation, general surgery or other specialist provision. In addition, there is a growing cohort of patients with multiple chronic conditions, including CKD, who, with appropriate management, can be safely managed in primary care. Chapter 1 provides an overview of the changing context of healthcare in England: the shift from acute care to the community; the need for more general, as opposed to disease-specific, chronic care; and the current development of policy that aims to promote more integrated and collaborative ways of working.

2.What Non-Specialists Need to Know about Chronic Kidney Disease

Graham Woodrow, Jeanette Denning and David Lewis

The health needs of patients with CKD are not homogeneous and vary over time, but all CKD patients share some health issues that need to be regularly appraised if patient outcomes are to be optimised. Chapter 2 provides an introduction to the different types of renal replacement therapy (RRT), including transplantation, and illustrates some of the technical and practical issues surrounding dialysis. As well as an overview of the clinical characteristics associated with CKD (anaemia, blood pressure management and bone mineral disease), the chapter considers issues associated with particular treatment modalities.

3.A Practical Approach to Chronic Kidney Disease in Primary Care

Hugh Rayner, Rajib Pal and Indranil Dasgupta

People with CKD cover a spectrum of health states, and treatment is ­generally titrated around the stages of the disease, treatment decisions and individual wishes and circumstances. Chapter 3 focuses on patients with stage 1–3 CKD, who are primarily managed in general practice. The aim of care is to arrest or slow down any deterioration in renal function. This requires treatment of predisposing conditions such as high blood pressure and diabetes, appropriate management of inter-current illnesses, optimising vascular health and promoting general wellbeing through lifestyle advice and support. The chapter also considers some ‘common’ scenarios in ­deteriorating renal function and how monitoring estimated glomerular filtration rate (eGFR) over time can inform a systematic approach to identifying those most at risk. Unusually, but pertinently, the chapter includes patients with a transplant kidney in the group with CKD. As the population of patients with a transplanted kidney increases with improved survival, they will increasingly present across the healthcare system. Non-renal practitioners need to be aware of drug interactions, as well as conditions that affect the absorption of immunosuppressive medication.

4.General Considerations Related to Treatment Modalities

Aisha I. Geeson, Charles R. V. Tomson and Lesley Lappin

CKD includes a spectrum of health states, not all of which are suitable for or responsive to all forms of treatment. In addition, increasingly many older patients have a number of other chronic conditions, they may be frail and cognitively impaired, and they may live alone. Although not necessarily a barrier to dialysis, all these factors need to be considered in relation to thelikely benefits and/or burdens of treatment regimes. Chapter 4 discusses the importance of early referral to specialist services, the factors influencing dialysis choice, empowering patients and shared decision making. It also discusses some of the clinical contraindications to individual treatment modalities.

5.Psychosocial Aspects of Living with Chronic Kidney Disease

Emma Coyne

This book considers the management of CKD across a spectrum of health states, but for the most part focuses on people who have stage 3–5 CKD. These are people who are likely to require treatment and support for the rest of their lives. This chapter reflects the experiences of patients, partners, families and professionals. It provides an insight into the reality of living with CKD and the impact this has on quality of life, not just for patients but for their immediate families as well. Patients and their partners are often experts in their care and should be involved in planning that care, particularly in non-specialist areas. The intention is to encourage providers to consider the wider manifestations of kidney disease and how their service design can best fit the needs of patients in the context of other services such as primary care.

6. Acute Kidney Injury in Hospitalised Patients

Keith Harkins, Rachel Lewis and Rachel Hilton

Older people are more likely to have additional complications and poorer outcomes than younger adults. It is not possible, or always appropriate, to manage all patients with acute kidney injury (AKI) in specialist units. Chapter 6 focuses on the causes, diagnosis and management of AKI in people whose condition may be complicated by multiple morbidity, frailty and cognitive impairment. It assumes a non-specialist setting and provides a guide to determining the parameters of care that consider the patient’s quality of life before AKI and the likely prognosis associated with various treatment options. It emphasises the importance of an ongoing dialogue with the patient (where possible) and close family members and/or carers. It stresses the need for a realistic, holistic assessment of the patient’s prognosis by a senior physician and the benefits of pre-empting possible complications.

7.Management of Patients with or at Risk of Kidney Disease on the Surgical Ward

Colin H. Jones and Maggie Higginbotham

Patients admitted to hospital for reasons other than kidney disease are at an increased risk of developing an acute kidney injury. This includes people undergoing a surgical procedure. Some patient groups are at a higher risk than others, and these include patients with pre-existing chronic conditions, including CKD. Identifying those patients at risk, assessing the risks and managing them proactively reduces the likelihood of avoidable harm. Chapter 7 discusses best practice in identifying patients with, or at risk of, AKI, pre-, peri- and postoperatively. It covers the spectrum of management, from those patients with no pre-existing kidney problems to those who require maintenance dialysis. It stresses the importance of determining the extent of the patient’s renal impairment and their maintenance regime. Ongoing communication with the renal specialist team is fundamental to optimising outcomes in this population.

8.Medication Management and Chronic Kidney Disease

Aileen Dunleavy

As with other aspects of managing kidney disease, medication regimes, whilst adjusted to complement general health states and treatment modalities, are tailored to the patient’s individual circumstances and usually managed by a nephrologist. Chapter 8 explains some of the general principles associated with medication management and the reasoning behind them. Safe and effective prescribing for people with CKD requires information regarding the extent of renal impairment and some understanding of how the drugs in question are absorbed and excreted. This chapter includes some important resources for prescribing support in the UK.

9. Optimising Nutrition in People with Chronic Kidney Disease

Helena Jackson and Sally Noble

Diet plays an important part in preventing CKD and delaying its progression; it is also one of life’s pleasures and is often restricted in patients with stage 3–5 CKD. In most instances, patients with CKD are advised to follow the same healthy-eating guide as the general population. Those with advanced disease usually require modifications to their diet, and individual dialysis modalities are associated with different restrictions, as is the case for patients who have diabetes as well as CKD. Dietary advice and support are provided by renal dietitians on an individual basis as necessary; however, patients and/or their families are generally very knowledgeable about their dietary constraints and can be a useful resource for healthcare professionals.

10. Supportive and Palliative Care for Patients with Advanced Kidney Disease

Sheila Johnston, Helen Noble and Rachel Lewis

All patients with CKD require a palliative care approach in the sense that they will never be cured. However, this chapter is concerned with those patients whose overall health is deteriorating irrespective of their treatment regime. Patients with stage 4 or 5 kidney disease have a much shorter life expectancy than those of a similar age in the general population, and for patients on dialysis it is even shorter. Chapter 10 discusses some of the practical difficulties in identifying and managing deteriorating and terminally ill patients. It illustrates the unpredictability of chronic disease trajectories and the importance (and difficulty) of being prognostically realistic.

Conclusion

This edited collection is aimed at improving the care of people with CKD. It represents ‘real life’ health care in which effective continuity and coordination of care are often challenged by complex and fragmented systems. Unusually, it includes professional insights into the practicalities of managing complex patients. It emphasises the centrality of the patient and family and the need to share information and expertise across traditional boundaries.

Chapter 1

Managing Chronic Conditions: The Policy Context

Beverley Matthews

NHS Kidney Care and Liver Care, UK

Introduction

The rising incidence and prevalence of chronic conditions presents a serious challenge to the effectiveness and sustainability of current and future healthcare services. A major issue is the increasing number of people with multiple chronic conditions and health services that continue to be organised around specific diseases. It is evident that chronic kidney disease (CKD) encompasses a spectrum of health states, and that these can be negatively affected by other chronic conditions and age-related problems such as memory impairment and mobility issues. Similarly, socioeconomic factors such as deprivation also adversely influence health outcomes. In effectively meeting the diverse needs of people with chronic conditions, a population management approach is required whereby the focus of care is based on the level of need and extends beyond traditional disease-specific approaches. Successive health policies reflect this shift with initiatives such as ‘Our health, our care, our say’ (Department of Health 2006) and the long-term conditions National Service Framework (Department of Health 2005) aimed at services being delivered through a ‘whole systems approach’. Continuity of care is required across ­traditional organisational boundaries through more effective collaboration of professionals. Key to this approach is engaging and supporting the patient in self-management. This chapter provides an overview of the changing context of healthcare services, including the innovative work of NHS Kidney Care in working across healthcare sectors and the current policy work which supports a more integrated and collaborative approach in supporting people with chronic kidney disease.

Chronic kidney disease in context

The effective management of chronic or long-term conditions poses a significant challenge for healthcare systems across the world. In England, around 15 million people have a long-term condition. While the number of ­people in England is likely to remain relatively steady, the number of people with multiple chronic conditions is expected to rise by a third over the next 10 years. People with long-term conditions account for 29% of the population in England, but are the most frequent users of healthcare services, accounting for 50% of all general practice appointments and 70% of all inpatient bed days. It is estimated that the treatment and care of those with long-term ­conditions accounts for 70% of the primary and acute care budget in England. This means around one-third of the population accounts for over two-thirds of the spend (Department of Health 2011). More significant than the impact on resources is the effect that long-term conditions have on quality of life. Each year around 170 000 people die prematurely in England, with the main causes being cancers and circulatory diseases. The proportion of people with a ­limiting long-term condition in work is a third lower than among those without (Department of Health 2011).

Healthcare services continue to be organised around specific conditions. Even for people with a single chronic condition, care is typically provided across a number of different health professionals and organisations. The resultant discontinuity and fragmentation of care can add to an already high disease burden (Nolte & McKee 2008) at the same time as increasing care costs through the duplication of interventions, omissions in treatment and miscommunication. Patient safety is also threatened (Boerma 2006). Whilst improvement initiatives have typically focused on optimising the clinical aspects of chronic care, this alone has not been as effective as wider initiatives that have included service redesign (Coleman et al. 2009, Curry & Ham 2010, Goodwin et al. 2012). How and where care is provided has important implications for the effectiveness and sustainability of long-term care, and strong primary care is considered to be central to improving patient outcomes and controlling costs (Roland et al. 2007). Patient-centred care, self-management support, improved continuity and coordination have all been identified as key contributors of quality in chronic care but can only be delivered through patients, professionals and organisations working more collaboratively together (Wagner 1996, Greaves & Campbell 2007).

Chronic kidney disease (CKD) describes abnormal kidney function and/or structure. It is common, frequently unrecognised, and it often exists together with other conditions (for example, cardiovascular disease and diabetes). The risk of developing CKD increases with age, and some conditions that coexist with CKD become more severe as kidney dysfunction advances. CKD covers a spectrum of health states including an asymptomatic period which is potentially detectable. Tests for CKD are both simple and widely available, and there is evidence that treatment can prevent or delay progression, reduce or ­prevent the development of complications and reduce the risk of cardiovascular ­disease. In cases where progression cannot be prevented, kidney function may deteriorate to stage 5, requiring life-saving dialysis, a kidney transplant or ­conservative management.

Estimates suggest that there about 4.5 million people in England with CKD. Since 2006, the prevalence of CKD has been reported annually in general practice and has seen a steady rise from 3% to 4.3% in 2009/10. However, compared with an estimated prevalence of 8.8%, diagnosis and ascertainment nationally is still only around half of the expected prevalence. Overall, there are an estimated 1.95 million people in England with undiagnosed CKD, who are therefore untreated and at risk of faster disease progression.

The policy context

In 2010, the UK government set out its long-term vision for the future of the National Health Service (NHS) and health services in England in the NHS White Paper, Equity and Excellence: Liberating the NHS. It committed to put the patient at the heart of services through greater choice and control including:

greater shared decision making and the principle of ‘no decision about me without me’

greater choice of treatment and access to information

a focus on personalised care that reflects individuals’ health and care needs, supports carers and encourages strong joint arrangements and local ­partnerships

Legislation to support this policy direction has since been enacted in the Health and Social Care Act (2012). The White Paper also committed the NHS to focus on outcomes and the quality standards that deliver them. The government’s objectives are to reduce mortality and morbidity, increase safety, and improve patient experience and outcomes for all. To this end, quality standards, developed by the National Institute for Health and Clinical Excellence (NICE), will inform the commissioning of all NHS care.

This approach builds upon and develops further the improvements achieved by the implementation of the National Service Frameworks (NSFs). The NSFs set clear quality requirements for care, based on the best evidence of what treatments and services work most effectively, seeking to ensure an equity of services irrespective of where they are delivered. The NSF for renal services (Department of Health 2004–05) placed a strong emphasis on identifying the condition early in primary care settings, slowing down its progress and minimising its impact on people’s lives. It led to significant improvements in the way kidney disease is managed. The NICE quality standards take this further and are a set of specific, concise statements that act as markers of high-­quality, cost-effective patient care, covering the treatment and prevention of different diseases and conditions. Derived from the best available evidence such as NICE guidance and other accredited sources, they are developed ­independently by NICE in collaboration with the NHS, social care professionals, their partners and service users. The quality standards are organised around five national outcome goals or domains, covering the breadth of NHS activity (Table 1.1), and they address the three dimensions of quality: clinical effectiveness, patient safety and patient experience. They enable:

Table 1.1 NHS Quality and Outcomes Framework: five domains, three dimensions.

Domain 1

Preventing people from dying prematurely

Domain 2

Enhancing quality of life for people with long-term conditions

Effectiveness

Domain 3

Helping people to recover from episodes of ill health or following injury

Domain 4

Ensuring people have a positive experience of care

Experience

Domain 5

Treating and caring for people in a safe environment and protecting them from avoidable harm

Safety

© The Health and Social Care Information Centre.

health and social care professionals to make decisions about care based on the latest evidence and best practice

patients to understand what service they can expect from their health and social care providers

NHS trusts to quickly and easily examine the clinical performance of their organisation and assess the standards of care they provide

commissioners to be confident that the services they are providing are high quality and cost-effective

NICE published its quality standards for chronic kidney disease in 2011 (Table 1.2).

In addition to informing commissioning decisions, quality standards can also be aligned with the NHS funding system to encourage providers to follow best practice. In 2011, a best practice tariff for renal dialysis was introduced, paying significantly more for dialysis sessions that are delivered through definitive access (arteriovenous fistula or graft) than for those that are not. This is known to be better for patients because the faster flow rates result in more effective and efficient dialysis and it is much safer because of the reduced risk of infection. The level of the tariff was set so that providers with 75% (increased yearly by 5% to meet the Renal Association clinical guidelines of 85%) of their patients on definitive access would receive the same level of funding as under the previous system. In addition to rewarding services that do better than this, the tariff also provided a strong lever for those that were below this level to bring their services in line with best clinical guidance.

Table 1.2 NICE quality standards for chronic kidney disease.

National Institute for Health and Clinical Excellence (2011) ‘Chronic Kidney Disease quality standard’. London: NICE. Available from www.nice.org.uk. Reproduced with permission.

1

People with risk factors for CKD are offered testing, and people with CKD are correctly identified.

2

People with CKD who may benefit from specialist care are referred for specialist assessment in accordance with NICE guidance.

3

People with CKD have a current agreed care plan appropriate to the stage and rate of progression of CKD.

4

People with CKD are assessed for cardiovascular risk.

5

People with higher levels of proteinuria, and people with diabetes and microalbuminuria, are enabled to safely maintain their systolic blood pressure within a target range 120–129 mmHg and their diastolic blood pressure below 80 mmHg.

6

People with CKD are assessed for disease progression.

7

People with CKD who become acutely unwell have their medication reviewed, and receive an assessment of volume status and renal function.

8

People with anaemia of CKD have access to and receive anaemia treatment in accordance with NICE guidance.

9

People with progressive CKD whose eGFR is less than 20 mL/min/1.73 m

2

, and/or who are likely to progress to established kidney failure within 12 months, receive unbiased personalised information on established kidney failure and renal replacement therapy options.

10

People with established renal failure have access to psychosocial support (which may include support with personal, family, financial, employment and/or social needs) appropriate to their circumstances.

11

People with CKD are supported to receive a pre-emptive kidney transplant before they need dialysis, if they are medically suitable.

12

People with CKD on dialysis are supported to receive a kidney transplant, if they are medically suitable.

13

People with established kidney failure start dialysis with a functioning arteriovenous fistula or peritoneal dialysis catheter in situ.

14

People on long-term dialysis receive the best possible therapy, incorporating regular and frequent application of dialysis and ideally home-based or self-care dialysis.

15

People with CKD receiving haemodialysis or training for home therapies who are eligible for transport have access to an effective and efficient transport service.

A similar tariff for multi-professional outpatient clinics encourages ­providers to offer patients with complex needs appointments with a multi-professional team (for example, a doctor and a psychologist or social worker) so that patients are given more choice and control and are able to move to their chosen treatment pathway more quickly. In facilitating support for patient choice and engagement as described in the White Paper, the NHS requires better systems that make it easier for different professionals and services to work more collaboratively together, providing more coordinated and seamless pathways of care. In addition to commissioning more integrated services, ­commissioners are also able to incentivise providers to deliver services in new ways through the Commissioning for Quality and Innovation (CQUIN) payment framework. This enables commissioners to make a percentage of payments to providers contingent on achieving locally agreed quality improvement goals.

The structure of commissioning is also changing. The Health and Social Care Act paves the way for the introduction of clinical commissioning groups (CCGs), consortia of GP practices that work together to commission services for their local populations. While some elements of kidney care, for example dialysis and transplantation, will be commissioned at a national level, CCGs will be responsible for local services to identify and manage CKD in the community. As member organisations, they will be able to engage with their member GPs on improving standards and sharing good practice; and with their population-based approach they are best placed to look at the most appropriate approaches to the prediction and prevention of CKD and proactive targeted interventions for their patients.

At the time of writing the Department of Health is consulting on a cardiovascular disease outcomes strategy. One of the main aims of this is to better integrate care across a range of associated chronic conditions including CKD, hypertension and diabetes.

The role of primary-care-based integrated teams

While there have been significant improvements in services for people with CKD in recent years, to achieve the ambitions set out in the Equity and Excellence White Paper and the best practice guidelines, a greater focus is needed on establishing integrated primary-care-based teams. An important role for these teams will be in determining which groups of patients can be safely managed in primary care and identifying those with more complex needs who are likely to benefit from specialist services. Most stages of CKD can be effectively managed in the community, and this is particularly so in patients whose condition is stable and who require only routine estimated ­glomerular filtration rate (eGFR) monitoring and lifestyle advice and support such as smoking cessation or weight management.

Appropriately trained nurses can carry out many roles in primary care that have previously been delivered by secondary care specialists. For example, the Intravenous Iron at Home initiative in Cornwall provides CKD patients with iron injections in the community or in their own home, saving them journeys of up to an hour each way for a 10-minute appointment in hospital. The service is more convenient for patients; it is safer, as there is a lower risk of developing a healthcare-acquired infection; and it saved the NHS an estimated £150 000 in 2010, based on 217 patients with an average of six appointments each year and with a third of them requiring transport or recouping travel costs.

Moving appropriate services to primary care is often cheaper and more patient-centred. Coordinating services can further improve the patient ­experience by avoiding duplication and omissions of care. People with CKD often have other chronic conditions and will typically receive care from a number of professionals across a number of organisations. Continuity and consistency of care can be improved by multiple providers agreeing roles and responsibilities in the patient pathway and effectively reducing ‘duplicate’ monitoring appointments and investigations. For example, patients frequently complain about needing to give blood tests for each clinic they attend. It would be more efficient and cost-effective and deliver a better patient experience if one blood test was taken and the results shared across the primary-care-based team. Coordination of care is dependent upon fluid data flows which ensure that patient-related information accompanies the patient to every healthcare encounter.

There are several innovative examples of primary and secondary services working together to offer patients a more joined-up and convenient service while using resources more wisely. For example, an e-mail helpline run by kidney consultants in South Tees is enabling GPs to provide timely, convenient and more efficient care for their patients with kidney disease. GPs can send e-mail questions or queries about specific patients and get a reply within a few hours. This means that patients can receive expert advice and care much more conveniently from their GP and are spared unnecessary hospital visits. The ability to offer more timely care, reduce hospital referrals and discharge patients sooner from outpatient follow-up enables a much more efficient use of NHS resources. The initiative has been well received by GPs and has helped to form strong and positive relationships between hospital consultants and their colleagues in general practice.

There is scope to greatly improve the early identification of patients with CKD. Local health needs assessments have not always been particularly effective at identifying the likely prevalence of the disease, as evidenced by the patchy estimates of the total CKD population. The government’s recent introduction of ‘Health Checks’ in general practice has incentivised the widespread assessment of vascular risk, including CKD. Other initiatives aimed at identifying, monitoring and managing people at risk from chronic conditions are ongoing locally. The Greater Manchester Collaboration for Leadership in Applied Health Research and Care (GM-CLAHRC) is one such programme, and it has recently illustrated the potential benefits for patients with vascular conditions, including CKD, from service providers working collaboratively across traditional boundaries.

Improved assessments will also enable primary-care-based integrated teams to take more of a ‘population health’ approach which aims to improve the health of a population as a whole rather than narrowly focusing on those with specific conditions. Population health management (PHM) is distinguished from disease management by including more chronic conditions and diseases, by use of a single point of contact and coordination, and by predictive modelling across multiple clinical conditions. PHM is considered broader than disease management in that it also includes enhanced care management for individuals at the highest level of risk and personal health management for those at lower levels of predicted health risk. Better understanding of local population health needs will enable a reduction in the significant variation in services and outcomes across the country.

From theory to the frontline

There is a clear vision, supported by evidence and clinical guidelines, for improved and more coordinated renal services centred on primary-care-based integrated teams. But how is this being put into practice? Across the NHS there are fantastic examples of good practice and innovative ways of enabling more integrated, seamless and patient-centred care. However more needs to be done to share examples, tools and resources to enable all patients to benefit. At a systems level, there is a wide range of levers and incentives for the commissioning and provision of quality services.

The NICE quality standards set out clear criteria for commissioners of services, and the use of the CQUIN payment framework enables commissioners to reward quality improvements. The NICE quality standards and best practice guidelines such as those from the Renal Association provide a useful guide to areas of focus for improvement. Consistent data collection and sharing between providers and commissioners, through the national Renal Dataset, offers an established set of metrics on which to base assessments of performance. Similarly, the Quality and Outcomes Framework (QOF) provides a set of financial incentives for general practices to carry out certain activities which promote consistency and equity of care. Since 2006, through the QOF, GPs have been paid partly on the basis of how well they identify patients with chronic kidney disease and how well they manage their care.

In secondary care, the use of CQUIN and other financial levers, such as best practice tariffs for haemodialysis and multi-professional clinics, are incentiv­ising best practice and discouraging avoidable variation in care. This will not only lead to improvements in the care provided, but will also have implications for how secondary care services work with primary care, driving improvements across the patients’ pathways. For example, providers who are referred patients who require acute dialysis will not be able to offer this through arteriovenous fistula or graft as these can take up to six months to establish. This means that they will be unable to meet the requirements of the best practice tariff, creating a strong incentive to work closely with primary care colleagues to ensure that appropriate referrals are made in a timely manner.

Care or management plans

Early detection is essential in establishing a proactive plan of care, the aim of which is to reduce the impact of CKD on a patient’s life and to minimise the risks of the patient’s condition suddenly deteriorating into a crisis. This is costly both for the patient and for the health service. All people identified with CKD should be referred to an integrated vascular risk clinic and offered appropriate investigations, including renal ultrasound and immunological tests, to come to a timely diagnosis of the cause of CKD, with referrals to a nephrologist where indicated by the clinical guidelines. Care plans should be developed in partnership between the patient and the integrated team. Self-management should be encouraged and facilitated. Named providers involved in the patient’s care should be listed, along with their responsibilities, and these may include nephrologists, dietitians, physiotherapists, nurse specialists, psychologists and social workers. Care planning requires the patient’s participation in decision making about his or her own health and care. The aim is to make decisions informed by the best available evidence and consistent with the patient’s views on what is important. This often requires ongoing ­discussions between healthcare professionals, the patient and the patient’s family. Evidence shows that involvement in care planning improves patients’ ability to self-care, improves concordance with treatment plans and improves their overall health outcomes. For patients referred to secondary care, an increased use of multi-professional clinics will encourage this to happen from the outset, and the care plan will be shared with the patient’s GP and community team so that care can be continuous across different providers.