E Ball and G Lelek
Published by Jones & Bartlett (2003)
ISBN: 0-7637-2038-0. 130 pages plus index.
100 Questions and Answers about Leukemia is a book written specifically for patients, families, carers, and consumers. An American haematologist and one of his patients, a CML and bone marrow transplant survivor, authored the book.
The content is based around 100 questions and is set out in seven parts: the basics of leukemias; facts about leukemia; treatment; blood and marrow stem cell transplantation; side-effects and complications of treatment; treatment facilities and healthcare providers; and living with leukemia. It has a good glossary of terms to help people understand complex haematology jargon.
The book, at 130 pages, is clearly more detailed than the average patient education booklet generally available in Australia, and is more typical of the complex literature that people educated at higher levels require these days. Patients or carers with lower levels of literacy would struggle with the details in this book. Therein is the main benefit to clinicians who are challenged to find materials that their patients and families are able to understand. This book could help build on more basic education.
The beauty of this book is that the authors have posed the sort of questions that people do not tend to ask as they think they might be silly ones, but will wish they had asked, and are not normally covered in other patient education materials. The book manages to include succinct information that generally suits all the different sub-types of leukaemias and their different treatments – information that patients can then build upon in discussions with their own specialist.
Given the rapid advances in knowledge and treatment practices in the malignant haematology arena, this book makes a good attempt at trying to cover the bases. It proactively discusses clinical trials, study drugs and protocols.
As a book for consumers, the discussion on treatment facilities and healthcare providers is interesting. While set in an American context, the principles remain pertinent to the Australian scene: concerns about the skills and experience of the treating team; being a patient in accredited facilities; and the role and importance of family members as advocates/decision makers when ill.
The last section is rightly entitled ’living with leukemia’ and addresses common rehabilitation and survivorship concerns of relapse of disease, uncertainty of full recovery of life roles and functioning and getting back into life and work.
Anyone who works with patients and families would appreciate having this book to refer them to, if they need information that is more detailed. It would also provide a useful perspective for all health professional students engaged in the care of people with haematological malignancies.
Leukaemia Foundation of NSW