Recent Results in Cancer Research P. M. Schlag · H.-J. Senn Series Editors Ute Goerling Editor Psycho-Oncology Indexed in PubMed/Medline 123 Recent Results in Cancer Research Volume 197 Managing Editors P. M. Schlag, Berlin, Germany H.-J. Senn, St. Gallen, Switzerland Associate Editors P. Kleihues, Zürich, Switzerland F. Stiefel, Lausanne, Switzerland B. Groner, Frankfurt, Germany A. Wallgren, Göteborg, Sweden Founding Editor P. Rentchnik, Geneva, Switzerland For furthervolumes: http://www.springer.com/series/392 Ute Goerling Editor Psycho-Oncology 123 Editor Ute Goerling Department of Psychooncology Charité ComprehensiveCancerCenter Berlin Germany ISSN 0080-0015 ISSN2197-6767 (electronic) ISBN 978-3-642-40186-2 ISBN 978-3-642-40187-9 (eBook) DOI 10.1007/978-3-642-40187-9 SpringerHeidelbergNewYorkDordrechtLondon LibraryofCongressControlNumber:2013953265 (cid:2)Springer-VerlagBerlinHeidelberg2014 Thisworkissubjecttocopyright.AllrightsarereservedbythePublisher,whetherthewholeorpartof the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation,broadcasting,reproductiononmicrofilmsorinanyotherphysicalway,andtransmissionor informationstorageandretrieval,electronicadaptation,computersoftware,orbysimilarordissimilar methodology now known or hereafter developed. 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Printedonacid-freepaper SpringerispartofSpringerScience+BusinessMedia(www.springer.com) Contents Psychosocial Impact of Cancer. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 Susanne Singer Fear of Progression. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 Peter Herschbach and Andreas Dinkel Gender Opportunities in Psychosocial Oncology. . . . . . . . . . . . . . . . . 31 Matthew Loscalzo and Karen Clark Psycho-Oncology: A Patient’s View . . . . . . . . . . . . . . . . . . . . . . . . . . 49 Patricia Garcia-Prieto The Oncological Patient in the Palliative Situation. . . . . . . . . . . . . . . 59 Steffen Eychmueller, Diana Zwahlen and Monica Fliedner Psychosocial Burden of Family Caregivers to Adults with Cancer. . . . 73 Anna-leila Williams Rehabilitation for Cancer Patients. . . . . . . . . . . . . . . . . . . . . . . . . . . 87 Joachim Weis and Jürgen M. Giesler Cancer Survivorship in Adults. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103 Cecilie E. Kiserud, Alv A. Dahl, Jon Håvard Loge and Sophie D. Fosså Psycho-Oncological Interventions and Psychotherapy in the Oncology Setting. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 121 Mirjam de Vries and Friedrich Stiefel Quality of Life in Oncology. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 137 Ute Goerling and Anna Stickel v Psychosocial Impact of Cancer Susanne Singer Abstract Diagnosisandtreatmentofmalignantdiseasesaffectinmanywaysthelivesof patients, relatives and friends. In this chapter, we summarise the current knowledge concerning the psychosocial consequences of cancer. Contents 1 PsychologicalImpact............................................................................................................ 2 1.1 PsychologicalReactiontotheCancerDiagnosis....................................................... 2 1.2 Denial........................................................................................................................... 2 1.3 Co-morbidMentalHealthConditions........................................................................ 3 1.4 PotentialPositiveImpact............................................................................................ 4 2 SocialImpact........................................................................................................................ 5 2.1 SocioeconomicPosition.............................................................................................. 5 2.2 SocialRelations........................................................................................................... 6 References................................................................................................................................... 7 S.Singer(&) EpidemiologyandHealthServicesResearch,UniversityMedicalCentreMainz,Obere ZahlbacherStraße69,55131,Mainz,Germany e-mail:[email protected] U.Goerling(ed.),Psycho-Oncology,RecentResultsinCancerResearch197, 1 DOI:10.1007/978-3-642-40187-9_1,(cid:2)Springer-VerlagBerlinHeidelberg2014 2 S.Singer 1 Psychological Impact 1.1 Psychological Reaction to the Cancer Diagnosis After a person hears he or she is diagnosed with cancer, the first reaction fre- quently is a sort of shock: ‘‘It can not be me; they must have mixed up the test results with another person’’. For many patients, receiving such a diagnosis is associated with the fear of intense pain, loss of control, stigmatisation and death (Holland et al. 1989). Getting such a diagnosis therefore feels like a nightmare. Complex processes of denial and subsequent realisation of the truth, often followed by denial again, are seen in those patients. After a while, depending on the psychosocial resources a patient has, the truth canbefacedmorefullybythepatient.Inthisphaseofcopingwithdisease,people often start fightingand arguing—with their doctors, their relatives,their fate. It is as if they try to overcome the disease by fighting. When they realise this is not possible, it often results in intense feelings of hope and helplessness which can turnintodepression.Noteverybodyisabletofinallyacceptthemalignantdisease as part of his or her life. These phases of coping described above were conceptualised by Elisabeth Kübler-Ross after she had interviewed numerous dying patients (Kübler-Ross 2008). Her concept has been adapted by many authors, and at the same time criticised for not being empirically valid. Indeed, these ‘‘phases’’ can be seen in many patients (and their relatives), however, there is no certain order of the ‘‘phases’’whichiswhyweprefertocallthememotionalreactions, thatcanoccur consecutively or simultaneously. 1.2 Denial Denial allows the patient to keep reality away from the consciousness until he or she is able to deal with it. Clinicians should be aware of the fact that this is a naturalprocessofourpsychetokeepourpsychologicalstructurealive.Atleastin the beginning of the cancer trajectory, patients and relatives should get enough timefromthemedicalteamuntiltheycanrefrainfromdenial.Itisnotadvisableto push them into the truth too fast. However, continuing denial can be a challenge in oncology, as patients often need to be treated within a short period of time. One should avoid ‘‘breaking the denial’’ by aggressive instructions about the disease and its treatment. This will only result in aggression and anger, be it openly expressed or more silent. A better way of supporting the patient in getting over his denial is to (a) strengthen his psychosocial resources and (b) avoiding denial in ones own perspective. Health care providers should try to be neutral and not joining the patient in his or her denial. It is often challenging to not do this because it is seductive, especially when treating young patients, to just avoid the idea of pain PsychosocialImpactofCancer 3 andpotentialdeath.However,ifthepatient feelsthathiscarersdenyhissituation he will be even more convinced that his fate is horrible and that he can not deal with it (if not even the ‘‘professionals’’ can deal with it!). This can also make the patient feel totally alone with his fears. So, if the health care provider can accept the patient in his denial and at the same time be prepared to also talk about distressingtopicssuchasthedangeroffunctionalimpairment,lossesanddeath,it will support the patient to overcome his denial. Example: My patient was a 40year oldsingle mother. She receivedthe diagnose ovarial carci- noma5yearsagoandIhadbeen seeinghersincethen.While shefirstwantedtosee a psychologisttoidentifypsychologicalcausesofherdiseasewiththeaimofthenchanging herlifeaccordinglytobecuredfromcancer,shewasfacedwithmultiplemetastasesinher entirebody.Still,shethoughtthatpsychotherapycancureherandsheaskedmetohelp hervisualiseherbloodandcancercellsbecauseshereadinabookthatthiswouldcure her. Isawheremotionalsufferingandwantedtosupporther,atthesametimeIknewthat she had a tumour with a poor prognosis, she had multiple metastases, and she was admittedtothepalliativemedicinewardatourhospital.Herdaughterwas15yearsold, thepatientdescribedherex-husbandasbeingalcoholdependent,soshedidnotwanther daughtertolivewithhim. Thepatientseemedtornbetweenthehopeofcureandtherealisationofnearbydeath, butthetruthwastoohardtobearsoshedenieditandseemedtoforceallotherstoshare this denial with her. Her physician told me about her refusal to find a solution for her daughter,whichneededtoberesolvedsinceshewasfacingdeath. Duringournextsession,thepatienttoldmeintearsthatherparentssaidtoher:‘‘Girl, makesureyougetbettersoon’’.Whenshewantedtotalkwiththemaboutherfears,they both said: ‘‘Forget it, you will be better’’. This obviously did not help her, as she felt utterly alone. In this situation, I decided to openly ask the patient about her feelings regardingdeathanddying.Noonefromtheteamhaddonethisbeforefeelingsorryforthe patientandbecausesheseemedtorefuseanyconversationaboutit.However,thepatient nowreactedrelieved.Wetalkedaboutdying,herexperienceswithdeath,herideasabout whathappensthereafter,andfinallyaboutherdaughterlivingwithouther. Thepatientdeceasedtwoweekslater. This example shows that, although patients often deny, they can at the same timetalkaboutdistressingtopicsiftheyexperienceasupportingrelationshipwith someone they trust and who is not in denial himself. 1.3 Co-morbid Mental Health Conditions At times, psychological distress can be severe for cancer patients, resulting in clinically relevant mental health conditions. Numerous studies have investigated the frequency of these conditions in cancer patients over the past years. Severalmeta-analysesandlargemulti-centrestudieshaveshownthat,duringthe time of cancer diagnosis, about 30 % of the patients suffer from a mental health condition(Mitchelletal.2011;Singeretal.2010,2013a;Vehlingetal.2012).Less isknownhoweveraboutthecourseofthoseconditionsduringthecancertrajectory. 4 S.Singer Available evidence suggests that their frequency does not decrease considerably over time (Bringmann et al. 2008). Known risk factors for mental disorders in cancer patients are pain, high symptomburden,fatigue,mentalhealthproblemsinthepastanddisability(Akechi etal.2004;Rooneyetal.2011;Banksetal.2010;Agarwaletal.2010).Thereare no consistent correlatesof depression incancerpatients(Mitchellet al. 2011). Insomestudiesalcoholdependencewasmorecommoninmen(Mathesonetal. 2012;Dawson1996;Kessleretal.1994;Bronischetal.1992;Kraußetal.2007)and inpatientswithmalignanciesintheheadandneck,oesophagusandliver(Shimazu etal.2012;Freedmanetal.2007;Hashibeetal.2007;Kugayaetal.2000). Not only does psychiatric co-morbidity represent enhanced distress of the patients calling for specific support from the medical team it also increases the lengthofhospitalstay(Wancataetal.2001)andnegativelyaffectssurvival,ifnot treated adequately (Kissane 2009; Pinquart et al. 2010). It is therefore highly important to identify patients suffering from mental health disorders as soon as possible. Unfortunately, health care providers often fail in identifying these patients(Singeretal.2011a;Absolometal.2011;Fallowfieldetal.2001;Söllner etal.2001),resultinginsevereunder-treatment(Singeretal.2005;Schwarzetal. 2006; Singer et al. 2011b; Oliffe et al. 2008; Stoppe et al. 1999; Werrbach et al. 1987; Wilhelm 2009). In a large prospective study with cancer patients we found that of those with mental health conditions, 9 % saw a psychotherapist within 3 months of the diagnosis,19 %after9monthsand11 %after15 months.Mentalhealthcareuse was higher in patients with children B 18 years (odds ratio 3.3) and somatic co-morbidity (odds ratio 2.6) (Singer et al. 2013a). Interestingly, in this study, uptake of mental health care was equal between men and women, in contrast to findings from studies in the general population (Oliffe et al. 2008; Stoppe et al. 1999; Werrbach et al. 1987; Wilhelm 2009). The admission to mental health care did not differ in patients with different educational attainments. 1.4 Potential Positive Impact During the past decade, increasing interest has been given to potential benefits of the experience ofcancerdespiteitbeingchallenging andoftenhighlydistressing, i.e. whether traumatic experiences can lead to emotional growth in patients and relatives (Hungerbuehler et al. 2011; Kahana et al. 2011; Kim et al. 2011; Love etal.2011;Demirtepe-Saygilietal.2011;Frommetal.1996).Suchposttraumatic growth has been defined as positive psychological change experienced as a result of the struggle with highly challenging life circumstances (Calhoun et al. 2000, 2001).Itdescribestheexperienceofindividualswhosedevelopmenthassurpassed what waspresent before thestrugglewiththecrises occurred,i.e.peoplefeel that they did not simply ‘‘go back to life as usual’’ but that they feel enriched, wiser, grown, etc. after the crisis. PsychosocialImpactofCancer 5 According to Tedeschi and Calhoun (2004), positive changes can be found in five dimensions, representing different types of posttraumatic growth: greater appreciation of life and changed sense of priorities; warmer, more intimate rela- tionships with others; a greater sense of personal strength; recognition of new possibilitiesofpathsforone’slifeandspiritualdevelopment(Tedeschietal.2004). Individuals’experienceofposttraumaticgrowthdependsonseveralpredictors. Many facilitating factors have been reported: younger age, female gender, low consumption of alcohol, low levels of pessimism and depression, high life satis- faction, high levels of extraversion, having an active sexual life and receiving counseling (Cormio et al. 2010; Milam 2004; Mols et al. 2009; Paul et al. 2010; Sheikh2004; Jansen et al. 2011;Barskovaet al. 2009).Benefit finding,a concept similar to posttraumatic growth, depends on the amount of time that has passed since stressoronset, the instrument used and the racial composition of the sample (Helgeson et al. 2006). To date only a few studies have investigated whether or not psychosocial interventions can help to increase posttraumatic growth after traumatic events or serious illness. Especially in cancer patients, evidence is scare. Own research has shown that art therapy once weekly over a period of 22 weeks in the outpatient settingdidnotincreaseposttraumaticgrowth(Singeretal.2013b).Thisfindingis in accordance with scepticism towards the concept of growth in the context of adversity, including serious illness and towards positive psychology in general (Coyne et al. 2010). 2 Social Impact Humanbeingsaresocialbeings.Weallshareourliveswithothersandareclosely related to others, willingly or unwillingly. This implies that a malignant disease not only affects the psychological aspects of ones life but also social relations. Both dimensions are closely intertwined. Beingapartofasocietyimpliesacertainstatuswithinthatsociety.Thatstatus shapes the image one has and increases or decreases the possibilities to exchange goods. In high income countries, social status is usually defined by income, educational attainment and employment, which is why the term preferred by sociologistsis‘‘socio-economicposition’’.Eachofthesethreefactorsdefiningthis position can be changed by a malignant disease. 2.1 Socioeconomic Position Lowsocioeconomicpositionisknowntobeassociatedwithpoorhealthontheone hand and with less access to healthcare on the other (Williams 2012; Garrido- Cumbrera et al. 2010; Korda et al. 2009; Habicht et al. 2005; Celik et al. 2000; Jenkinsetal.2008;Lorantetal.2007;Weichetal.1998,2001;Singeretal.2012).