Cancer and Cancer Care

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Debbie Wyatt & Nicholas Hulbert-Williams

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  • Front Matter
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    About the Editors

    Debbie Wyatt is a Senior Lecturer in the Faculty of Health and Social Care at the University of Chester (UK) and Macmillan Lecturer/Head of Clinical Education at Clatterbridge Cancer Centre NHS Foundation Trust. She qualified as a Registered Nurse at Hammersmith Hospital in 1983 and following a variety of nursing posts moved into nurse education in 1987. She is an NMC registered Lecturer/Practice Educator, and has completed the ENB 237 Oncology Nursing Certificate and Diploma of Professional Studies in Nursing. She holds a BA (Hons) Health from Liverpool John Moores University and an MSc in Nursing from the Royal College of Nursing. Debbie also became an accredited facilitator for the National Cancer Action Team’s Connected Advanced Communication Skills Training in 2009 and continues to facilitate communication skills courses for a range of healthcare professionals who work in cancer settings.

    Nicholas Hulbert-Williams is a Coaching Psychologist and Reader in Psychology at the University of Chester (UK) where he is Director of the Chester Research Unit for the Psychology of Health (CRUPH). He holds an undergraduate degree in Psychology from the University of Wales, Bangor, and a PhD from Cardiff University School of Medicine. He is a Fellow of Higher Education Academy and Associate Fellow of the British Psychological Society. He is a member of the NCRI Psychosocial Oncology and Survivorship Clinical Studies Group, IPOS Research Committee and IPOS Early Career Professionals Committees, and was Chair of the British Psychosocial Oncology Society (BPOS) from 2010 to 2014. Nicholas is a member of the Professional Advisory Board (Research Group) for the Maggie Keswick Jencks Cancer Caring Centres Trust, and currently sits on the Editorial Board of the European Journal of Cancer Care.

    List of Contributors

    Victoria Bates, University of Liverpool, PhD

    Jacqueline Bloomfield, The University of Sydney, PhD, MN, PGDip (Prof Healthcare Ed), BN

    Mary Boulton, Oxford Brookes University, BA, PhD

    Hazel Brodie, Director of Healthcare, 1854 Public Health, BSc, MPH, DFPH

    Leslie Bunt, University of the West of England, MBE, BA, PGCert, PhD, LGSM (MT), FAMI, FRSA

    Christine Campbell, University of Edinburgh, BSc (Hons), PhD, MPH

    Mark Cobb, Sheffield Teaching Hospitals NHS Foundation Trust, BSc, MA, PhD

    Bill Culbard, Stirling University, MA

    Alison Conner, Vancouver Coastal Health, Registered Nurse (UK and Canada), MSc Health Sciences, PG Dip in CBT

    Maureen Deacon, University of Chester, PhD

    Julie Fish, Director of the Mary Seacole Reearch Centre, De Montfort University Leicester, PhD

    Samantha Flynn, University of Chester, BSc

    Liz Forbat, Australian Catholic University, BA (Hons), PG Cert, MSc, PhD

    Claire Foster, University of Southampton, PhD, MSc, BSc, CPsychol

    George Foster, Countess of Chester Hospital, MD FRCS

    Margaret Foulkes, The Clatterbridge Cancer Centre NHS Foundation Trust, BA (Hons), MA, DASS, Home Office Letter of Recognition in Child Care

    Fiona Gibbs

    Pat Gillis, NIHR Clinical Research Network North West Coast, RGN

    Claire Green, The Christie School of Oncology, PhD, MSc, BSc (Hons) and Adv Dip Counselling

    Anoop Haridass, The Clatterbridge Cancer Centre NHS Foundation Trust, MSc MBBS MRCP FRCR

    Catherine Heaven, The Christie School of Oncology

    Gill Hubbard, University of Stirling, PhD, MSc, BA (Hons), PGCE

    Lee Hulbert-Williams, University of Chester, BSc, MSc, PhD and AFBPsS

    Nicholas Hulbert-Williams, University of Chester, BSc (Hons) PhD CPsychol AFBPsS

    Elise Hymanson, The Christie NHS Foundation Trust, Specialty Doctor Psycho-Oncology, MBChB

    Mark R.D. Johnson, De Montfort University Leicester, MA, PhD, DipHE

    Daniel Kelly, Cardiff University, PhD, MSc, BSc, RN, PGCE

    Fiona Kennedy, University of Leeds, BSc, MSc, PhD

    Alex King, Imperial College Healthcare NHS Trust, BSc (Hons), MSc, DClinPsy

    Elaine Lennan, Southampton University Hospitals NHS Trust

    Tina Lightfoot, Countess of Chester Hospital NHS Foundation Trust, RGN, MS

    Paul Mackenzie, MSc, BA (Hons), RN

    Paul Mansour, Southport and Ormskirk Hospital NHS Trust, MBChB, FRCPath

    Ann Maloney, Western Sussex Hospitals Trust

    Kathryn Mannix, The Newcastle upon Tyne Hospitals NHS Foundation Trust, MB, BS, FRCP, PGCert, Fellow of BABCP

    Peter McAlear, Glasgow Area Prostate Cancer Support Group, BEng, CEng, MIMechE

    Alex Mitchell, Leicestershire Partnership NHS Trust and University of Leicester

    Fay Mitchell, East Cheshire Hospice

    Helen Neville-Webbe, The Clatterbridge Cancer Centre NHS Foundation Trust, MBCBH, MRCP, PhD

    Kate Parker, The Clatterbridge Cancer Centre NHS Foundation Trust

    Ruth Sadik, University of Chester

    Daniel Seddon, NHS England, Public Health England, MBChB, MPH, MRCGP, FFPH, PGCert

    Lesley Storey, Queen’s University Belfast, PhD

    Brooke Swash, University of Chester and University of Cambridge, MEd, BSc (Hons)

    Colin Thain, University of Central Lancashire, Preston, MA (Hons), MSc, MA, PGDE (Nursing), RN, RNT, FHEA

    Irene Tuffrey-Wijne, St George’s University of London and Kingston University, PhD, RN

    Dale Vimalchandran, Countess of Chester Hospital, MD, FRCS

    Eila Watson, Oxford Brookes University, BSc (Hons), PhD

    Jan Woodhouse, University of Chester, M Ed, PGDE, BN (Hons), DipN, RGN, OND, FETC

    David Wright, Christie Hospital NHS Foundation Trust, Teenage Cancer Trust and TYAC, BA, BSc

    Debbie Wyatt, University of Chester and Clatterbridge Cancer Centre NHS Foundation Trust, RGN, DPSN, BA (Hons), Certificate of Education for Nurse Teachers, RNT, MSc

    Emma Whitby, The Clatterbridge Cancer Centre NHS Foundation Trust, BSc

    Foreword

    Nearly all health care professionals will come across a person with cancer either in their professional or non-professional lives and by 2030 there will be more than four million people living with a diagnosis of cancer. Nearly half of the population can expect to have cancer during their lifetime; many do not realise how cancer has changed. For some cancers, the majority of patients can expect to live decades after treatment but a significant minority may have unmet needs related to ongoing effects of their treatment; others may live many months or years with incurable but treatable cancer and still others may die within a few months of diagnosis. A holistic approach to treatment and care can make all the difference. We welcome the publication of a book which recognises the importance of understanding cancer in the context of prevailing attitudes as well as how to personalise care for each patient.

    Professor Jane Maher, Joint Chief Medical Officer, Macmillan Cancer Support

    Cancer is a major cause of mortality and morbidity across the globe. Despite many advances in prevention, screening, detection and treatment, the incidence of cancer is still rising as the population ages, and while some cancers have high cure rates, others are associated with high mortality rates. As treatments improve, the number of people living with cancer, coping with long-term side effects and managing the risk of cancer recurrence is growing. Thus this disease continues to be a major challenge to patients, families, health professionals and healthcare systems.

    Cancer is a complex disease that often requires multimodal therapy and the involvement of many different health professionals. Therefore, the multidisciplinary and holistic focus of this book is particularly appropriate and welcome. Decision-making in cancer increasingly involves a multidisciplinary team who meet together and discuss all relevant options, before formulating and presenting a clear recommendation to the patient and family. The optimal combination and timing of treatments often vary from patient to patient. Thus it is critical to have all perspectives, including those of the patient and family, who bring their own values, beliefs, circumstances and goals to the table.

    The editors have carefully included chapters on both the physical and psychosocial aspects of the disease, its treatment and care because these aspects are inextricably interleaved in the patient and family experience. For example, patients with worse side effects are known to be at greater risk of anxiety and depression. Conversely high levels of distress can increase the use of pain medication, lengthen hospital stays and increase re-hospitalization rates.

    The International Psycho-Oncology Society has set a standard of care that involves monitoring distress as the 6th vital sign, along with temperature, respiration, heart rate, blood pressure and pain. The high rate of distress in cancer patients and family members is well recognized. Patients and their families can be challenged by the stress of diagnosis, the immediate consequences of treatment such as pain, disfigurement and fatigue, existential questions and fear of cancer recurrence, changes to body image, difficulties with sexuality, loss of fertility and interpersonal problems. Thus, psychosocial care is now recognized as an integral part of quality cancer care, and the book includes several chapters discussing different approaches to such care.

    Another excellent aspect of this book is its focus on vulnerable and special populations who may need specific care, and can present particular challenges to healthcare staff. These include patients with intellectual disability and mental health issues. Within a busy cancer clinic, these people can cause disruption and confusion if staff do not understand their specific needs and how to ensure they receive appropriate care. The book provides a very helpful perspective on these issues.

    In sum, I believe that Cancer and Cancer Care will be an invaluable text on cancer for health professionals, researchers and policy makers. The editors have amassed a very expert group of contributors writing on this topic and providing a truly holistic and multidisciplinary view of cancer care.

    Phyllis Butow, PhD

    Professor and NHMRC Senior Principal Research Fellow, University of Sydney

    Centre for Medical Psychology and Evidence-based Decision-making (CeMPED),

    Chair, Psycho-Oncology Co-operative Research Group (PoCoG)

    Preface and Acknowledgements

    As a leading cause of morbidity and mortality, cancer continues to be high on the national and global agenda. The impact of the disease and its treatments on individuals cannot be underestimated; cancer has a profound effect on many dimensions of a person’s life, including their physical health and their psychological and social wellbeing.

    In putting Cancer and Cancer Care together we aimed to take an holistic perspective and we purposively emphasize throughout the inter-relationship between biological and psychosocial aspects of the illness experience. Chapters cover fundamental aspects of cancer diagnosis, treatment, survival and aspects of psychosocial support for those affected by cancer. Specialist chapters also focus on the unique challenges of providing cancer care to populations with particular needs, including older adults, children and young people, those with intellectual disabilities and those with mental health problems. The importance of practice is a strong feature of the book, with each chapter illustrating the relevance of the topic to practice. We believe that it is only in taking this holistic, multiprofessional perspective to understanding cancer and its impact that we can provide the best possible cancer care for our patients and those close to them.

    Because of the interconnection between the physical and psychosocial, we haven’t organized our textbook in formal sections. Rather, we’ve ordered chapters in a way that (we hope) builds our readers’ knowledge from the basics of carcinogenesis and important aspects of diagnosis, risks, screening and detection (Chapters 15); through chapters on specific population considerations (Chapter 610) and cancer treatments (Chapters 1116); into a more detailed exploration of psychosocial and survivorship issues for people affected by cancer (Chapters 1731). We finish with two chapters on research methods in cancer care: one focusing on clinical drug trials, and another on integrating psychosocial perspectives into cancer care research (Chapters 3233). Readers may engage with the book in its entirety or use it as a reference point or supplementary reading to provide an introduction to any of these specific aspects relating to cancer care.

    The book is written from a multidisciplinary perspective and we are delighted to include chapters written by leading experts, practitioners and researchers across the spectrum of subdisciplines within cancer care. We designed the book to be of interest to a wide range of readers, including health and social care practitioners undertaking post-registration oncology education, who may be new to some of the included topics; qualified health and social care practitioners who work with people with cancer (and their families), who may wish to use the book as a resource to refresh their clinical knowledge and skills; managers and commissioners of cancer services, who can consult the book for the latest theoretical and empirical evidence base for cancer care needs and best-practice standards; and researchers who are involved in work with people affected by cancer and their carers, particularly those researching in the field of psychosocial oncology who may lack the biological understanding of a core healthcare practitioner. Whatever reason you’ve had to pick up this book, we hope that it will provide you with a comprehensive and useful resource to understanding the key factors that influence cancer care, and that you’ll be able to use this to positively impact on the experience of those affected by the disease and its treatments.

    Undertaking editorship of a textbook of this size and scope was never going to be easy but we are very much in debt to a wonderfully supportive group of people who made the job much easier than it otherwise could have been. We would like to acknowledge the efforts of all of the contributors who have worked with us over the past two years, and who have so eloquently put all of their years of training, experience and expertise into the chapters that follow. We’ve had some extremely helpful feedback from four anonymous peer reviewers early in the process – thank you for your time, wise words and advice. To the team at Sage – especially Becky Taylor, Emma Milman and Katie Forsythe who have supported this project from its earliest conception – we are grateful for the expertise and encouragement that you’ve shown to get us to the point of publication. And last, but most certainly not least, we thank our families for the support, patience and forbearance that you’ve offered whilst we worked on this textbook; we promise not to start another one again too soon!

    Debbie WyattNicholas Hulbert-Williams

    Publisher’s Acknowledgements

    The authors and publisher would like to thank the following for their kind permission to republish material:

    Figure 3.2 is reprinted from Macmillan Publisher Ltd on behalf of Cancer Research UK: British Journal of Cancer, 101(s2): S1-4, copyright (2009).

    Table 3.2 is from National Cancer Intelligence Network (2012b) Routes to Diagnosis. 2006–2008 NCIN Information Supplement available from: www.ncin.org.uk/publications/routes_to_diagnosis.aspx Republished with permission of National Cancer Intelligence Network (NCIN).

    Tables 3.3 and 3.4 are reprinted by permission from Macmillian Publishers Ltd on behalf of Cancer Research UK: British Journal of Cancer, 101, S80–S86, copyright (2009).

    The example poster: the cough campaign in Chapter 3 is Crown Copyright.

    The box in chapter 5 Modified Bloom-Richardson grading of breast carcinoma: Nottingham criteria is reproduced from ‘Breast Cancer Grading: Nottingham Criteria’ (2005), a publication of the National Office of the NHS Cancer Screening Programmes (operated by Public Health England), with permission.

    Table 12.2 Karnofsky scale is republished with permission of John Wiley and Sons. The Zubrod scale is republished with permission of Wolters Kluwer Health.

    Figure 13.2 Isodose Distribution is available from: www.jacmp.org/index.php/jacmp/article/view/2060/1216. Republished under a Creative Commons Attribution license.

    The patients at East Cheshire Hospice for their permission to republish image in Chapter 26.

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