Bogda Koczwara Editor Cancer and Chronic Conditions Addressing the Problem of Multimorbidity in Cancer Patients and Survivors Cancer and Chronic Conditions Bogda Koczwara Editor Cancer and Chronic Conditions Addressing the Problem of Multimorbidity in Cancer Patients and Survivors 123 Editor Bogda Koczwara,AM Flinders Centrefor Innovation in Cancer Flinders University Bedford Park,SA Australia ISBN978-981-10-1843-5 ISBN978-981-10-1844-2 (eBook) DOI 10.1007/978-981-10-1844-2 LibraryofCongressControlNumber:2016945773 ©SpringerScience+BusinessMediaSingapore2016 Thisworkissubjecttocopyright.AllrightsarereservedbythePublisher,whetherthewholeorpart of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission orinformationstorageandretrieval,electronicadaptation,computersoftware,orbysimilarordissimilar methodologynowknownorhereafterdeveloped. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publicationdoesnotimply,evenintheabsenceofaspecificstatement,thatsuchnamesareexemptfrom therelevantprotectivelawsandregulationsandthereforefreeforgeneraluse. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authorsortheeditorsgiveawarranty,expressorimplied,withrespecttothematerialcontainedhereinor foranyerrorsoromissionsthatmayhavebeenmade. Printedonacid-freepaper ThisSpringerimprintispublishedbySpringerNature TheregisteredcompanyisSpringerScience+BusinessMediaSingaporePteLtd. Foreword It is such a surprise that a book like this has not been written before. Cancer does not occur in a vacuum. Just as our lives are complex and multi- layered,soareourindividualmedicalsituationswithmanycancerpatientsalready experiencing other diseases and conditions, often with no seeming connection to theircancer.Dealingwiththefalloutofacancerdiagnosisandtreatmentisdifficult enough on its own, but when it occurs against a backdrop of other illnesses, the degree of difficulty can become overwhelming. Thecancerworldisbecomingincreasinglysophisticatedwithdeeperknowledge about the disease, more high-tech detection approaches, improved treatments and the commitment towards improved statistics and outcomes. Large amounts of money are spent on driving research across the cancer spectrum. We celebrate incremental steps in new knowledge and its application, and so we should! Within all the closely watched cancer statistics and clinical discussions sit ordinary people—cancer patients—who have been thrust into the alien world of oncology and just want to get better. The statistics and graphs actually mean very little toan individual who will not know on which part of thesurvival curve he or she sits until ultimately survival or death occurs. Thetroubleisthatalotcangooninthemeantime,includingsimplylivingwith all the complications and complexities that go with it. Cancerneversitsinitsownseparatespace,nottoapatientanyway,eventhough sometimesitcanfeellikeanall-encompassingpresence.Thereareotherbitsoflife that need to be taken account of, including decisions about treatment for example, whichwillalsohaveanimpactonotherpeopleclosetous.Inthebreastcancerarea which is what I know, a mother might decide to put off her breast reconstruction operationuntilshehasallheryoungchildrenatschoolandrelativelyindependent, physically at least; or a rural woman might opt for mastectomy rather than breast-conserving surgery because she cannot manage to live away from the v vi Foreword property for 6 weeks of radiotherapy; another young woman might well decide to changeherchemotherapyregimetoprotectfuturefertilityprospects.Consideration about our individual social situation can certainly change the way we approach cancer treatment. Twenty-plus years ago, when I was diagnosed with cancer, there was not so muchattentiongiventoanindividual’slifecircumstances.Thefocuswassquarely on the tumour with minimal consideration directed towards social needs or emo- tional well-being. Increasingly, since that time, an individual’s circumstances and setting have been acknowledged as an important pathway to best managing a personwithcancer—sothatwhatishappeningintheheartandintheheadistaken into account as well as how the tumour or disease is clinically presenting. Psychosocial clinical practice guidelines are a strong acknowledgement of this. Despite a movement towards considering the whole patient, many people with cancerwouldstillsaytheirdoctors’treatmentapproachesdidnotfocussufficiently on their holistic care. And that is just within the cancer realm! Fromthepatient’sperspective,navigatingtheoncologyworldistrickyatbest.It is imperative to ensure you have the best team caring for you and that the advice you are given is accurate and reflects best practice. But who, apart from yourself, has your whole situation uppermost in considerations? Who is going to actively consider decisions and their impact on other areas of an individual’s health, especiallywhentheseneedsarealsocomplexandever-changing?Howdowebest consider and manage the situation when the cancer treatment aimed at helping us survive causes long-term damage to our organs or results in a life-threatening non-cancer condition? Ifresearchers,clinicians,policymakersandthelikearetotakestridesandreally make a difference in assisting cancer patients with comorbidities or multimorbidi- ties,thenthiswouldbeaverypositiveandwelcomestep.Itwilltakefarmorethan goodwillandcommitment,butthisisanexcellentstart.Itwillrequirecollaboration and I suggest a completely new way of looking at how we approach cancer and those most directly affected by the disease. It will also need agreed system change withprocessesandpolicies.Perhapsmorethananything,itwillrequirechampions and trailblazers. If we are to make real progress, we need people whose vision can take in wide horizons. We know this will not be easy. As patients, we are looking for practi- tioners who are not only specialists, but also subspecialists, and by definition, this makes collaboration across other areas of medicine and science so much more challenging. This book is not able to provide simple solutions; it marks a starting point. It raises issues for consideration and discussion. It highlights the challenges for researchers, clinicians and policy makers. Most importantly, it is an Foreword vii acknowledgement that if we are to genuinely meet the complex needs of people affected by cancer, in the short and long terms, then we have to ask questions, considerotherperspectives,collaborate,workonthebigpictureandlookwithnew eyes as much as possible from the patient’s perspective. Lyn Swinburne, AM Breast Cancer Survivor and Advocate Founder of Breast Cancer Network Australia Preface The great progress in cancer control could not have been possible without the single-minded focus on cancer, almost at exclusion of anything else. To control cancer, one should not to be distracted by the side effects of treatment and often sheer physical and mental exhaustion that accompanies cancer and its treatment. Only byputting these aside,one cangrasp a chance ofchangingthecourse ofthis terrible disease. Butasanoncologistwhohastreatedpatientsfornearlyaquarterofthecentury, I face the sobering truth that while the frontiers in the war against cancer are advancing every day, the lay of the land is defined by more than cancer alone. It takes a few years after the cancer diagnosis before one can embrace the joy of cancer survivorship, but also face the tragedy of long-standing consequences of cancertreatment,andthequestionofcouldhavethesebeenprevented?Withmore cancers becoming treatable and treatments better tolerated, we need to learn to better balance the benefits and risks of treatment in light of coexisting conditions that the patient is already dealing with. As cancer is becoming a chronic condition itself and the prevalence of chronic conditionsintheWesternpopulationattheall-timehigh,thisbookaimstoanswer some of the questions related to the interface of cancer and comorbidity that an oncology practitioners face every day—how does comorbidity impact on cancer treatment and its outcomes and how can we deliver better care that addresses both cancerandthecomorbidconditions?Insomecases,whereevidenceisnotyetwell established, the authors define questions as the basis for future research. My thanks go to all the contributors of the book who brought with them tremendous diversity of perspectives and fields truly reflective of the complexity ofthetopicandwho,throughcomingtogetherinthisproject,serveasnidusofthe multidisciplinary collaboration in this field. ix x Preface Most importantly, my deepest thanks go to my family for their unwavering patienceandsupportduringthedevelopmentofthebook.Icould nothavedone it without them. Bedford Park, SA, Australia Bogda Koczwara, AM Contents 1 What Is Comorbidity?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 Diana Sarfati and Jason Gurney 2 How Do We Measure Comorbidity?. . . . . . . . . . . . . . . . . . . . . . . 35 Diana Sarfati 3 Cancer, Chronic Conditions and Social Disadvantage—The Perfect Storm . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71 Janelle V. Levesque, Afaf Girgis and Paul R. Ward 4 Impact of Comorbidity on Cancer Screening and Diagnosis. . . . . . 105 Steven T. Fleming, Diana Sarfati, Gretchen Kimmick, Nancy Schoenberg and Ruth Cunningham 5 Impact of Comorbidity on Treatment Decision Making and Outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 131 Jae Jin Lee and Martine Extermann 6 The Impact of Cancer and Chronic Conditions on Caregivers and Family Members. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159 Sylvie D. Lambert, Janelle V. Levesque and Afaf Girgis 7 Prevention of Chronic Conditions and Cancer. . . . . . . . . . . . . . . . 203 Alexandra McCarthy, Tina Skinner, Michael Fenech and Shelley Keating 8 Chronic Condition Management Models for Cancer Care and Survivorship. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 241 Sharon Lawn and Malcolm Battersby 9 The Management of Polypharmacy in People with Cancer and Chronic Conditions. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 261 Justin P. Turner, Ross A. McKinnon and J. Simon Bell xi