Management of Adult Glioma in Nursing Practice

315 Pages·2019·5.313 MB·English

by  Ingela Oberg

Management
of Adult Glioma
in Nursing Practice
Ingela Oberg
Editor
123
Management of Adult Glioma
in Nursing Practice
Ingela Oberg
Editor
Management of Adult
Glioma in Nursing Practice
Editor
Ingela Oberg
Department of Neurosurgery
Cambridge University Hospitals NHS Foundation
Cambridge
Cambridgeshire
UK
ISBN 978-3-319-76746-8 ISBN 978-3-319-76747-5 (eBook)
https://doi.org/10.1007/978-3-319-76747-5
Library of Congress Control Number: 2018964421
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Foreword
Anyone whose life has been touched by a brain tumour diagnosis understands the
impact of this indiscriminate disease.
Alongside debilitating ill health, it often brings crippling fear and feelings of
isolation for those diagnosed and for their families.
At The Brain Tumour Charity we hear every day from people seeking answers
and support, searching for options and asking what to expect as the months and
years roll by.
Every one of them deserves the best possible treatment and care at each stage of
their brain tumour journey.
Every one of them needs access to experts in the field of neuro-oncology who are
committed, as we are, to improving the lives of all those affected by a brain tumour.
This book, compiled and written by just such experts to share knowledge and
best practice for adult glioma patients from diagnosis to end-of-life care, is a major
step towards that goal.
Sarah Lindsell
The Brain Tumour Charity
Farnborough, Hampshire, UK
v
Preface
There are over 150 different kinds of documented brain tumours, yet despite the
disparity between their grading and tumour type, the malignant brain tumours
behave in a very similar way in the adult population, often associated with poor
survival rates. The most frequent of the adult malignant brain tumours remains the
glioma, which is what this book focuses on.
The role of ward-based nurses is ever evolving and over the last few decades has
become less patient focused and more ‘managerial’ with onus on flowcharts, assess-
ments, documentation, audits, drug (medicine) rounds and aiding patient flow—as
well as supporting junior and senior colleagues alike, be they nursing or medical. In
the United Kingdom, the introduction of clinical nurse specialists has helped greatly
in bridging the gap between ward-based nurses and consultant-led patient care.
Specialist nurses are highly skilled members of a multidisciplinary team (MDT)
who work to ensure decisions are made with the patient’s best interest at heart.
Caring for a glioma patient is complex and multifaceted, and for the novice (and/
or specialist) nurse, it can seem a daunting and sometimes overwhelming task filled
with arduous decisions, poor outcomes and high patient turnover. However, it can
also be a truly rewarding experience as you help the patient and their loved ones
navigate through the myriad of questions, concerns and treatment options, enabling
them to make informed decisions which are right for them at any given time point,
whether this consists of surgery, active treatment, palliation or best supportive care.
The overarching aim of neuro-oncology nurses, be they ward based or specialist,
is to support patients and their families and loved ones, through the disease trajec-
tory, and provide them with appropriate and timely information, enabling them to
self-manage as much as possible. Patients and carers also need to know when, where
and how to seek additional help and support, as well as to recognise transition from
one care phase to another, including transition to the end-of-life phase. To help
patients achieve this, the neuro-oncology nurse requires a deeper understanding of
their diagnosis, prognosis and treatment options, along with their side effects, whilst
also maintaining realistic expectations and facilitating hope. To enable this to hap-
pen, neuro-oncology nurses must possess robust communication skills to facilitate
open and honest conversations to occur in a sensitive and empathic manner.
This book helps the reader navigate through these variable segments and helps them
gain insight and knowledge around adult gliomas. The aim of this book is to equip the
novice neuro-oncology nurse and other healthcare professionals (including nursing and
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viii Preface
medical students) with the tools required to adequately care for an adult glioma patient
from the start of his or her disease trajectory right through to end-of-life scenarios,
providing clinical overviews and setting learning outcomes within each chapter.
The first few chapters of this book look at the role of the multidisciplinary team
(MDT) and its core (as well as extended) membership, providing a typical presenta-
tion pathway of a patient with a suspected glioma. Other chapters cover anatomy
and physiology; the role of neuroimaging and histopathology, along with neurologi-
cal presentations and medical management of gliomas; and the importance of know-
ing how to best capture patient’s needs and concerns at varying stages in their
treatment pathway and how to act on these results—a process known as holistic
needs assessment (HNA) frameworks.
Vital communication skills and key elements required on how to facilitate a
skilled conversation are explored in depth in this book. It will help equip the novice
nurse with important skills required to communicate well, keeping the patient at the
centre of the discussions. Surgical management of gliomas, along with commonly
encountered pre- and post-operative complications, is also explored in greater detail.
Treatment options with radiotherapy and chemotherapy (and their side effects) are
detailed, including a portrayal of a patient scenario to enable visualisation of a
patient’s journey. Exploring the vital role allied health professionals (AHPs) provide,
alongside the concept of specialised and specific, targeted neuro-r ehabilitation, is
also looked at in this section. Furthermore, we gain first-hand insight from a patient
on what daily life is like living with a glioma and how her experience of being diag-
nosed abruptly shaped her perception of the healthcare system. It provides a very rare
(and vital) alternative perspective—from that of a patient.
The final chapters of this book take us through the legalities that surround a
patient’s mental capacity—why and how this can be affected and what we as nurses
need to consider in order to protect their rights and act as patient advocates. The
transition from paediatrics to adult care—something referred to as TYA (Teenage
and Young Adult) services within the United Kingdom—is also explored, alongside
their behaviour and developmental stages, leading to a greater understanding of this
vastly under-represented patient cohort. Other chapters explore the difference
between palliative and end-of-life care, including clinical manifestations of when
the patient is entering this final stage in their disease trajectory. Another vital chap-
ter is the views of a carer and spouse—in this instance, a wife, helping to look after
her husband who is living with a transforming glioma. This is also whilst she is a
parent, as well as the main income earner for the family. This is a very moving and
insightful chapter on the vastly extended role carers take on. It provides us with new
insights into their deeply personal journeys, hopefully equipping the reader with a
new sense of compassion and empathy, stretching beyond the hospital setting.
It is hoped this book will equip the newly qualified healthcare professional with
qualities to help manage a complex glioma patient well, placing their well-being at
the forefront of clinical practice. Whilst it is recommended this book is read as a
whole, chapters can be accessed individually, as a form of reference, to help gain
deeper insight into specific aspects of the care pathway. Enjoy!
Cambridge, UK Ingela Oberg
Acknowledgements
This book would never have come to fruition if it wasn’t for the determination, dedi-
cation and hard work of every individual, contributing author. My sincerest, heart-
felt thanks to them all for agreeing to not only write their chapter(s) but also for
making my role in editing so straightforward as a result, due to their personal
engagement and boundless professionalism. My greatest thanks, however, go to
Zara Lorenz who wrote about caring for a loved one with a malignant brain tumour
and Isabella Robbins as a patient’s perspective. Their reflective accounts are heart-
felt and give us real insight into daily life and struggles with a glioma. As a direct
result, both these chapters have changed how I not only engage and communicate
with patients but also how I engage with carers.
Thanks also go to those behind the scenes, to those colleagues who have helped
me edit and proof-read chapters. In particular, thanks go to my colleagues at
Cambridge University Hospital NHS Foundation Trust (Addenbrooke’s), Dr. Sarah
Jefferies (consultant clinical oncologist) and Mr. Tom Santarius (consultant neuro-
surgeon), for helping me edit the oncological, surgical and anatomical chapters, and
to Helen Bulbeck (Brainstrust) for helping with the editing process for the holistic
needs assessment chapter.
I would like to extend my personal thanks to Sarah Lindsell (CEO, The Brain
Tumour Charity) who did not flinch when asked to write the foreword for this book
but indeed jumped at the chance with great enthusiasm! I am also enormously grate-
ful and very humbled that Springer Publishing (and all those within) from the very
start of this process believed a novice editor like myself could produce a relevant
book on gliomas. I hope I have managed to do them all proud.
Finally, my thanks go to my partner Adam who was left to manage our busy
household looking after our young twin boys, enabling me to work from home (and
at home), at any given opportunity, for months on end. You are my rock.
ix
Contents
1 Neuroanatomy and Physiology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Christina Amidei and Sarah Trese
2 Neuroimaging . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21
Elliott Rees and Tilak Das
3 Neurological Assessment of Patients with Gliomas . . . . . . . . . . . . . . . . 37
Timothy Ham and Timothy Rittman
4 Multidisciplinary Team Working . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49
Ingela Oberg
5 Medical Management of Adult Glioma . . . . . . . . . . . . . . . . . . . . . . . . . . 61
Robin Grant
6 Glioma Surgery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 81
Joanna Ashby and Colin Watts
7 The Classification of Adult Gliomas . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95
Kieren S. J. Allinson
8 Pre- and Post-operative Complications . . . . . . . . . . . . . . . . . . . . . . . . . . 109
Ingela Oberg
9 Neurorehabilitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127
Michelangelo Bartolo and Chiara Zucchella
10 A Voyage Around My Brain and Myself . . . . . . . . . . . . . . . . . . . . . . . . . 147
Isabella Robbins
11 Holistic Needs Assessment and Care Planning . . . . . . . . . . . . . . . . . . . . 161
Karin Piil and Lena Rosenlund
12 Communication Skills: The Patient as Co-pilot . . . . . . . . . . . . . . . . . . . 177
Helen Bulbeck
13 The Mental Capacity Act/Deprivation of Liberty Safeguards
and Their Relationship to Adult Safeguarding . . . . . . . . . . . . . . . . . . . 195
Heather Ayles
xi
xii Contents
14 Radiotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 213
Kate E. Burton
15 Chemotherapy for Gliomas . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 229
Hanneke Zwinkels
16 Allied Health Professional Rehabilitation in the UK . . . . . . . . . . . . . . . 245
Sara Robson and Louisa Gilpin
17 Teenagers and Young Adults/Transition Services: Implications
for Nurses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 261
Jane Robson
18 Carers Perspective: “The Wind, It Howls” . . . . . . . . . . . . . . . . . . . . . . . 277
Zara Lorenz
19 End of Life Care for the Glioma Patient . . . . . . . . . . . . . . . . . . . . . . . . . 299
Roeline Pasman, Hanneke Zwinkels, and Lara Fritz
Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 313