PhD Thesis THE BODY, CANCER AND PSYCHOLOGICAL WELL-BEING

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2 FACULTY OF HEALTH SCIENCES UNIVERSITY OF COPENHAGEN PhD Thesis THE BODY, CANCER AND PSYCHOLOGICAL WELL-BEING The psychosocial impact of a multidimensional exercise programme offered as a complementary intervention to cancer patients undergoing chemotherapy Julie Midtgaard The University Hospitals Center for Nursing and Care Research Copenhagen University Hospital 2006

3 PhD Thesis: The body, cancer and psychological Wellbeing - The psychosocial impact of a multidimensional exercise programme offered as a complementary intervention to cancer patients undergoing chemotherapy Julie Midtgaard The thesis will be defended on Wednesday the 24th of May, 2006 at in Hannover Auditorium, Panum Institute, Copenhagen. Official opponents Associate Professor, MD, Lone Schmidt, Institute of Public Health, Copenhagen, Denmark Head of Department, MD, Christoffer Johansen, Institute of Cancer Epidemiology, Danish Cancer Society, Copenhagen, Denmark Professor, Head of Research, MD, Egil W. Martinsen. Modum Bad Research Institute, Vikersund, Norway Scientific supervisors Professor Lis Adamsen, UCSF, Copenhagen University Hospital Professor Mikael Rørth, Department of Oncology, Copenhagen University Hospital Associate Professor Reinhard Stelter, Institute of Exercise and Sport Sciences, University of Copenhagen Forside: Fotograf Poul Rasmussen Print: Jespersen Offset aps ISBN-13: ISBN-10: Universitetshospitalernes Center for Sygepleje- og Omsorgsforskning (UCSF), Rigshospitalet (Afsnit 7331), Blegdamsvej 9, DK-2100 Copenhagen, Denmark, ucsf@ucsf.dk

4 TAK Undersøgelserne i afhandlingen er gennemført med finansiel støtte fra Kræftens Bekæmpelse (Det Psykosociale Forskningsudvalg), Kulturministeriets Udvalg for Idrætsforskning og HS Forskningsråd. Tak herfor og samtidig tak til Rigshospitalets Onkologiske og Hæmatologiske Klinik. Derudover har talrige professionelle og personlige ressourcepersoner har medvirket til udviklingen og realiseringen af nærværende ph.d. studie. Allerførst tak til samtlige tidligere og nuværende deltagere i Projekt Krop & Kræft. Projektet er udviklet for jer og uden jeres deltagelse ville det ikke have været gennemført. Idealet om at ville reflektere og honorere jeres engagement og tillid har tjent som en ærefuld og taknemlig rettesnor undervejs i hele forløbet. Tak til en person som har investeret uanet mængde tid, tillid og tålmodighed i min person og udviklingen af mine forskningsmæssige kompetencer, nemlig min hovedvejleder og mentor, Professor Lis Adamsen. Lis forlanger det bedste, yder selv det ypperste og tør det meste. Som sådan er hun et forbillede ikke bare for mig personligt, men tillige et ideal for en forskning, der skal inspirere og overbevise om udvikling og afprøvning af de bedste psykosociale interventioner for alle kræftpatienter og deres familier. At Projekt Krop & Kræft med rimelighed kan betegnes som en skelsættende succes skyldes primært Lis vovemod, utrættelige entusiasme og skarpsindighed. Tak til projektvejleder og klinisk ansvarlig for Projekt Krop & Kræft, Professor, Overlæge, dr.med. Mikael Rørth, som besidder en naturlig autoritet og faglig dybde, som har været berigende og beroligende i uvurderlig grad. Også tak til projektvejleder Lektor Reinhard Stelter, som har været en opmuntrende sparringspartner. Tak fordi du har stolet på mig og for at have introduceret mig til idrætspsykologien og oven i købet ladet døren stå åben! Jeg har værdsat din kompetence og din opbakning hele vejen igennem. En helt særlig tak til forskningssygeplejerske, MPH studerende Christina Andersen og projektfysioterapeut Morten Quist for den væsentlige støtte og solidaritet, som I har ydet undervejs i det daglige. Jeg har den dybeste respekt for jeres menneskelige og professionelle indstilling. Jeg har nydt godt af jeres respektive faglige kompetencer og fortrolighed. I har gjort det til en fornøjelse at komme på arbejde selv på dage, hvor forskningen har syntes mere opslidende end berigende og når nøden har været størst har jeg kendt jer som mine venner. Også tak til øvrige kolleger og samarbejdspartnere i (tilknytning til) Projekt Krop & Kræft: Forskningssygeplejerske, MPH studerende Tom Møller, Projektfysioterapeut Kira Bloomquist (girlfriend!), psykolog Lasse Knutsen og cand. cur. Betina Lund-Nielsen. Ligeledes tak til vikarierende projektsygeplejersker Birgit Nielsen (din seje kvinde!), Jeanette Holder og Birgitte Rasmussen for jeres åbne tilgang og for et lærerigt samarbejde håber at skulle arbejde sammen med jer en anden gang. Tak til studentermedhjælp Anders Giørtz Tveterås og Lektor, cand.scient. Dorte Kronborg for tålmodigt og lærerigt samarbejde i forbindelse med udarbejdelse og diskussion af statistiske analyser. Ingen opgave har været for lille og ingen for stor. Speciel tak til Sheila Schmidt for oversættelse af såvel artikler som afhandling. Tak for din fleksibilitet, din imødekommenhed og dine altid opkvikkende, nysgerrige og konstruktive kommentarer. Tak til de mange samarbejdspartnere og ressourcepersoner, som har inspireret og hjulpet

5 på forskellige tidspunkter og i forskelligt omfang. Tak til Professor, Overlæge, dr.med. Niels Borregaard, Psykolog Eva Ethelberg, Overlæge, dr.med. Mogens Grønvold, Lektor Kaya Roessler, Professor Helle Plough Hansen, Adjunkt Susanne Ditlevsen, Lektor Merete Watt Boolsen, Professor Bernadine Pinto samt netværk af forskere og ph.d. studerende i Kræftens Bekæmpelses Afdeling for Psykosocial Kræftforskning. Tak for et altid dynamisk og begejstrende forskningsmiljø skabt af tidligere og nuværende kolleger i UCSF: Seniorforsker Ingrid Egerod, Seniorforsker Lone Friis Thing, PhD-studerende Mary Jarden, studentermedhjælper Glennie Marie Hansen og Rikke Vittrup samt tidligere seniorforskere Kristian Larsen, Lis Wagner og Helle Timm. Specielt tak til centerets sekretærer Bente Kronborg og Randi Pihl Johansson for jeres uafbrudte hjælpsomhed, jeres smittende humør, kreativitet og uhøjtidelige effektivitet. Også speciel tak til bibliotekar Anders Larsen, som gang på gang, hurtigt og sikkert, imødekommer ethvert ønske og behov for hjælp til alt fra eftersøgning og fremskaffelse af litteratur til optagelse og redigering af billeddokumentation. Din grundighed, og dine tekniske og kunstneriske evner er og har været en uvurderlig hjælp. opbakning. Tak fordi I har holdt ved i perioder, hvor min tilstedeværelse og opmærksomhed har været begrænset og hvor hverdagen for os hver især har overtaget den gode vilje. Tak til Cecilie og Jacob Cornett for at have delt uddannelsen til psykolog og for at sætte nye standarder for god psykolog-faglighed og fordomsfrit venskab. Min beundring for jeres faglige og private dispositioner står ikke mål med hyppigheden af vores samvær. Til min mor og min far for jeres betingelsesløse kærlighed og støtte. I har givet mig troen på det gode i mennesket og på vigtigheden af sammenhold, forandring og forhandling. Til min bror for at have sejret i sine egne kampe og kunne stå distancen. Tak også til min svigermor Birgit for din uforbeholdne hjælpsomhed og gavmildhed. Den mest dybtfølte tak til Nikolai og Babette for daglige uopfordrede påmindelser om jeres kærlighed mit livs lykke og livstykke. Tak fordi I aldrig lader mig tvivle på styrken i vores trekløver. Intet og ingen kan nogensinde måle sig hermed. Julie Midtgaard København, den 21. april 2006 Stort tak til Team Proof of Life ( Rasmus Dysted og Morten Quist (igen!). Realiseringen af vores fælles frivillige initiativ fungerede som et motiverende og til tider fortrøstende fristed i færdiggørelsen af afhandlingen. Jeres entusiasme er en hyldest til fællesskabets ressourcer og til betydningen af den gode historie. Det er et privilegium at kende jer. Gid I må få den ambassadør-status I hver især fortjener! Af hjertet tak til venner og familie. Tak til Marie, Mette og Vanessa for jeres aldrig svigtende forståelse, anerkendelse og

6 The present thesis is based on the following papers: I. Midtgaard J, Rørth M, Stelter R, Tveterås A, Andersen C, Quist M, Møller T, Adamsen L. (2005) The impact of a multidimensional exercise program on self-reported anxiety and depression in cancer patients undergoing chemotherapy a Phase II study. Palliative & Supportive Care, 3, II. Midtgaard J, Rørth M, Stelter R, Adamsen L. (2006). The Group Matters: An explorative study of group cohesion and quality of life in cancer patients participating in physical exercise intervention during treatment. Eur J Cancer Care, 15, III. Midtgaard J, Tveterås A, Rørth M, Stelter R, Adamsen L. (2006) The impact of supervised exercise intervention on short-term postprogram physical activity behavior in cancer patients undergoing chemotherapy: one- and three-month follow-up on the Body And Cancer project. Palliative & Supportive Care. Accepted. IV. Midtgaard J; Stelter R; Rørth M; and Adamsen L. (2006) Regaining a sense of agency and shared self-reliance: The experience of advanced disease cancer patients participating in a multidimensional exercise intervention while undergoing chemotherapy analysis of patient diaries. Submitted. The papers are referred by Roman numerals in the review.

7 CONTENTS DANSK RESUME... 3 ENGLISH SUMMARY... 6 INTRODUCTION... 9 The Body & Cancer Project... 9 BACKGROUND Psychosocial Interventions for Cancer Patients Physical Activity for Cancer Patients Undergoing Chemotherapy Hypotheses and Aim THEORETICAL FRAMEWORK (PRECONCEPTION) THE STUDY DESIGN Design Sample DEFINITIONS Psychological well-being (Paper I-IV) Psychological distress (Paper I) Group Cohesion (Paper II) HRQOL (Paper II) Leisure Time Physical Activity Level (Paper III) Self-Identity/Narratives (Paper IV) METHODS Quantitative data collection methods Qualitative data collection methods DATA ANALYSIS AND INTERPRETATION Quantitative data analysis (Paper I, II og III) Qualitative data analysis (Paper II & IV) FINDINGS Prevalence of and Changes in Psychological Distress (Paper I) Group cohesion and Health-related Quality of Life (Paper II) Post-programme Leisure Time Physical Activity Adherence (Paper III) Changes in advanced disease cancer patients narratives (Paper IV) DISCUSSION Assessment of Psychological Distress (PD) The psychotherapeutic impact of the intervention... 26

8 METHODOLOGICAL CONSIDERATIONS AND LIMITATIONS Theoretic Perspectives Validity CONCLUSIONS PERSPECTIVES TABLE 1: The Body Package TABLE 2: Weekly schedule MODEL MODEL MODEL REFERENCES PAPER I-IV 2

9 DANSK RESUME Projekt Krop, kræft og psykisk velbefindende: En prospektiv, deskriptiv undersøgelse af den psykosociale effekt af bredspektret fysisk træning som komplementær intervention til kræftpatienter i kemoterapi Baggrund: Ph.d. forløbet er gen-nemført inden for rammerne af Projekt Krop og Kræft på Rigshospitalet. Projekt Krop og Kræft er et tværfagligt og tværvidenskabeligt forskningsprogram, der omhandler fysisk træning til onkologiske og hæmatologiske kræftpatienter i kemoterapi med eller uden påvist restsygdom i rimelig god performance (performancestadie 0-1, WHO). Formålet med projekt Krop og Kræft er via en kropslig og socialt orienteret intervention at styrke den enkelte kræftsyge under kemoterapi. Midlet er en Kropspakke bestående af fire elementer: Fysisk træning (styrke- og konditionstræning), afspændings- og kropsbevidsthedstræning, og massage. Der trænes fire gange om ugen, ni timer ugentligt, i seks uger på hold med syv til ni deltagere. Sammensætningen af teserne i det overordnede projekt afspejler interventionens bredspektrede karakter og indeholder såvel idrætsfysiologiske, læge- og sygeplejefaglige samt sociologisk og psykologisk funderede indfaldsvinkler. Formål og teser: Det overordnede spørgsmål, der rejses i afhandlingen, er, hvorvidt og hvordan en kropslig og socialt orienteret indsats kan bruges terapeutisk overfor mennesker, der behandles for kræft. Således er formålet med ph.d. afhandlingen at undersøge interventionens psykosociale effekt. Følgende teser med tilhørende outcomes/begreber er afhandlet separat i fire videnskabelige artikler. Interventionen vil: reducere graden af angst og depression (distress) understøtte sociale relationer mellem ligestillede (group cohesion) og social og emotionel funktion (health-relatedquality-of-life) øge fastholdelse af motionsadfærd (leisure time physical activity level) styrke den enkeltes selvfortælling (narrative) Begrebet om psykisk velbefindende henviser i afhandlingen til en tilstand karakteriseret af fravær af psykisk belastning (engelsk distress) - fx angst og depression, der kan relateres til den enkeltes oplevelse af kontrol og handle-/mestringsmuligheder samt til følelsen af at være aktivt medansvarlig i egen sygdoms- og behandlingsforløb/-situation. Centralt for afhandlingens formål er den sociale interaktion, som udspiller sig i og omkring fysisk træning som intervention for grupper af kræftpatienter i kemoterapi, samt en fokusering på og afdækning af individuelle psykiske og sociale kompetencer og ressourcer som modvægt til symptomer og deficits. Design og metoder: Undersøgelsen er gennemført som et eksplorativt, deskriptivt, pre- og posttest interventions-studie, der anvender såvel kvantitative og kvalitative som stand-ardiserede og egne udviklede dataindsamlingsmetoder. Måling af selvoplevet angst og depression er foretaget på 91 patienter ved hjælp af spørgeskemaet Hospital Anxiety and Depression Scale (HADS). De sociale og emotionelle aspekter af interven-tionen er beskrevet for 55 patienter gennem syv gruppeinterviews og ved hjælp af udvalgte skalaer i livskvalitetsspørgeskemaet EORTC QLQ-C30 og det generelle helbredsspørgeskema MOS SF-36. Patienternes handlekompetence målt som fastholdelse af selvrapporteret fysisk aktivitetsniveau er undersøgt på 61 patienter gennem gentagne semistrukturerede interviews. Ændring i selvidentitet er beskrevet kvalitativt ved hjælp af narrativ analyse af dagbøger for fem patienter. Derudover inddrager undersøgelsen fysiologisk måling af patienternes kondition (maksimal iltoptagelse VO 2 max). Meto- 3

10 derne og tilhørende data er be-skrevet i fire videnskabelige artikler. Population: I alt 115 kræftpatienter i kemoterapi indgik i undersøgelsen. Disse var forskellige med hensyn til diagnose (80% onkologiske, 20% hæmatologiske), sygdomsstadie (54% påvist restsygdom, 46% uden restsygdom), behandlingsregime (55% i behandling for udvidet sygdom, 45% adjuverende behandling), og demografiske variable (gennemsnitsalder 42,7; 70% kvinder, 30% mænd). Populationsstørrelsen varierer i de forskellige artikler afhængig af metodevalg, frafald, samt tidspunkt for udarbejdelse af manuskript i relation til dataindsamling. Resultater: Undersøgelsens kvanti-tative analyser viste, at den samlede patientpopulation (n=91) på trods af relativ lav baseline angst- og depressionsprevalens (hhv. 22% og 10%) efter de seks ugers intervention har opnået signifikant reduktion i såvel angst (p <.001) som depression (p =.042). Der dokumenteredes desuden en sammenhæng mellem depressionsniveau/- grad og køn, fysisk aktivitetsniveau inden sygdom samt behandling (± adjuverende), samt en positiv sammenhæng mellem reduktion i depression og øgning i kondition (VO2max) (p =.046). Desuden viste undersøgelse af patienternes sociale og emotionelle velbefindende/livskvalitet i relation til interventionens gruppe-organisering, at patienterne (n=55) opnåede signifikante forbedringer i mental health (SF-36) (p =.025), social funktion (SF-36) (p =.004) og emotional funktion (EORTC QLQ-C30) (p =.045) (SF-36). Den kvantitative undersøgelse af patienternes handlekompetence (n=61) målt som fastholdelse af fysisk aktivitetsniveau (pre-diagnostisk frem til 1-3 måneder post-interventionelt), viste en signifikant reduktion i fysisk aktivitetsniveau fra 6 til 10 uger (p <.0001), og fra 6 til 18 uger (p <.0001). Patienterne havde dog et signifikant højere fysisk aktivitetsniveau efter interventions-ophør i forhold til deres baseline niveau (p <.0001). Desuden dokumenteredes, at patienternes fysiske aktivitetsniveau efter interventionsophør relaterede sig til det fysiske aktivitetsniveau inden sygdomsdebut (p =.0003); hvorvidt de fortsat var i behandling (kemo- og/eller stråleterapi) (p =.0035); samt postinterventionel ændring i depression (p =.0027). Undersøgelsens kvalitative analyser af bl.a. de sociale relationer under interventionen viste, at gruppen undervejs i programmet fik en selvstændig motiverende betydning og bidrog til at øge og optimere den enkeltes fysiske præstation. Gruppen udviste en samhørighed, der tog form af en særlig form for team spirit og esprit de corps baseret på respekt, forståelse, inspiration og vilje. De kvalitative analyser (gruppe og semistrukturerede individuelle interview samt kropsdagbøger) udpegede desuden handling, struktur og forpligtelse, kropslig nydelse og velbefindende, midlertidig fortrængning af lidelse og fysisk ubehag som nogle af kvaliteterne ved interventionen, som kan have betydning for øget psykisk velbefindende. Teori- og analysemodel: Afhandlingen kombinerer det psykoonkologiske og det idrætspsykologiske genstandsfelt og tilhørende konceptualiseringer. Hensigten er at belyse evt. Mekanismer ved fysisk aktivitet, der kan bidrage til, at individet i fællesskab med ligestillede kan handle overfor de psykosociale begrænsninger og belastninger som kræftsygdommen og behandlingen kan medføre fx angst og depression samt social eksklusion. Afhandlingens tema og tværvidenskabelige forankring og metodologi indskriver overordnet afhandlingen i community psykologi. Ifølge community psykologien må psykiske problemer ses i relation til den livssituation, som den enkelte befinder sig i, og psykologiske reaktioner og aktioner forstås i en social og materiel kontekst. Teorien, der i afhandlingen danner grundlag for analyse og fortolkning af de enkelte delundersøgelsers resultater, repræsenterer en psykologisk tilgang, der gør op med begrebet om personligheden som en substantiel kerne i 4

11 det enkelte individ. Personligheden som begreb erstattes med begrebet om subjektivitet eller position, hvilket i afhandlingen bl.a. kommer til udtryk ved anvendelse af narrativ teori til beskrivelse af, hvorledes interventionen kan medvirke til skabelsen af fælles historier, der åbner for nye forståelser af den livssituation, den enkelte befinder sig i. og dermed mindre dominerende. Interventionen psy-koterapeutiske værdi knytter sig til dannelsen af nye fortællinger (narrativer) og en alternativ kropslig realitet, hvor kræftsygdom og kvaliteter ved at føle sig rask og kunne handle kan eksistere side om side. Begrænsninger: Qua undersøgelsens design er det ikke muligt at afgøre, hvorvidt de påviste ændringer skyldes interventionen, eller om de kan være fremkommet som resultat af andre påvirkninger (fx behandlingseffekt eller udvikling over tid). Hertil kræves en klinisk kontrolleret, randomiseret undersøgelse. Ligeledes er undersøgelsens generaliseringsmulighed begrænset. Dette skyldes, at patienterne i denne undersøgelse er selvhenviste og yngre end gennemsnittet og ikke repræsentative i forhold til den samlede baggrundspopulation af kræftpatienter i kemoterapi. Undersøgelsen er ikke dimensioneret til at afklare, om nogle diagnosegrupper har mere gavn af interventionen end andre. Endelig har det ikke været muligt at udpege kausale virkningsforhold imellem de inkluderede outcomes. Konklusion: Ph.d. afhandlingen dokumenterer at onkologiske og hæmatologiske kræftpatienter i kemoterapi i væsentlig grad kan øge deres psykiske velbefindende igennem et seks ugers, gruppebaseret, superviseret, bredspektret fysisk træningsprogram. I henhold til de teoretiske overvejelser bag undersøgelsen vises at interventionens reducerende effekt på bl.a. angst og depression (engelsk distress) kan hænge sammen med, at inter-ventionen skaber mulighed for fremsættelsen af forhåbninger om øget velbefindende. På trods af at det ikke i alle tilfælde er muligt at negligere sygdommen og medfølgende angst for fremtiden, oplever deltagerne, at de (gen)vinder tiltro til at de kan udføre ønskede handlinger, hvorved eksisterende problemer bliver modtagelige for løsninger 5

12 ENGLISH SUMMARY The Body, Cancer and Psychological Well-being - The psychosocial impact of a multidimensional exercise programme offered as a complementary intervention to cancer patients undergoing chemotherapy Background: The thesis is framed in the project Body & Cancer, which is carried out at The Copenhagen University Hospital. The Body & Cancer Project is designed to provide body-focused and socially orientated efforts to support oncological and haematological cancer patients at different stages of the disease (evidence vs. no evidence of disease), in varying cytostatic treatment regimes, and who had a performance stage score of 0-1 (WHO). The aim of the Body & Cancer Project was to strengthen the cancer patient undergoing chemotherapy. This was carried out via an intervention known as the body package involving heavy resistance training and cycling on stationary bicycles; relaxation training; massage and body awareness training. The intervention was implemented over a 6-week period, 9 hours weekly in the mornings. The patients trained in mixed groups (male and female) of seven to nine patients in each. Aim and hypotheses: The thesis hypotheses are based on the assumption that the intervention would reduce negative factors (anxiety and depression); and strengthen positive factors (selfefficacy, self-esteem and social interaction). These assumptions were combined into an overall assumption that the intervention would improve the patients psychological well-being. The following hypotheses about the intervention were formulated prior to the investigation: The intervention would Reduce anxiety and depression (distress). Strengthen social interaction with others in a similar situation (group cohesion) and social and emotional function (health-related quality-of-life). Enhance pshysical active adherence (leisure time physical activity level). Support the individual s self-identity (narrative) Crucial to the aim of the thesis is the social interaction taking place in the context of physical activity as an intervention for groups of cancer patients in chemotherapy; and also a focus on the individuals psychological and social competencies as a counterbalance to the focus on deficits and symptoms. Design and methods: This study used an exploratory and triangulated component design. It uncovered the patient s psychological state before, during and following participation in the intervention. The project was organized as an exploratory, descriptive, pre- and post-test one-group intervention study and includes both standardized and validated questionnaires as well as own developed methods (patient diary). The assessment of self-reported anxiety and depression is based on 91 patients by means of The Hospital Anxiety and Depression Scale (HADS). The social and emotional aspects of the intervention are investigated in 55 patients through seven group interviews and by use of selected scales in the cancer specific qualityof-life questionnaire EORTC QLQ-C30 and the general health questionnaire MOS SF-36. Patients level of self-efficacy was measured in terms of post-programme physical activity adherence in 61 patients by means of repeated semi-structured interviews. Changes in self-identity are described qualitatively using phenomenological and narrative analysis of diaries from a purposive sample of five patients with advanced disease. The thesis furthermore includes physiological measurements of the patients physical capacity/fitness (maximum oxygen uptake VO 2 max). The methods and matching data are described in four scientific papers. 6

13 Study population: In total 115 cancer patients undergoing chemotherapy were included in the study. The patients were different in relation to diagnosis (80% oncological, 20% haematological), prognosis/disease stage (54% with evidence of disease, 46% without evidence of disease), treatment protocols (55% received treatment on the basis of evidence of advanced disease, 45% in adjuvant treatment), and demographic variables (mean age 42,7; 70% female, 30% male). The population size varies dependent on choice of method, drop-outs, and time of analysis in relation to the collection of data. Findings: Despite relatively moderate prevalence rates of anxiety and depression at baseline (22% and 10% respectively), the thesis quantitative results showed that the patients (n=91) significantly reduced their level of both anxiety (p <.001) and depression (p =.042) over the 6-week period. The study documented an association between depression score and gender, physical activity level pre-illness, treatment (± adjuvant chemotherapy), and a positive association between reduction in depression and improvement in physical capacity (VO2max) (p =.046). Furthermore the investigation of the patients social and emotional well-being/quality-of-life in relation to the group organization of the intervention showed that the patients (n=55) obtained significant improvements in mental health (SF-36) (p =.025), social function (SF-36) (p =.004), and emotional function (EORTC QLQ-C30) (p =.045) (SF-36). Examination of patients level of self-efficacy measured in terms of selfreported, post-programme (1-3 months) physical activity adherence, showed a significant reduction in physical activity level from 6 to 10 weeks (p <.0001), and from 6 to 18 weeks (p <.0001). However, patients maintained a significantly higher level of physical activity compared to their reported baseline level (p <.0001). The patients self-reported post-programme physical activity level was associated with physical activity level pre-illness (p =.0003); treatment status (p =.0035); and post-programme changes in depression (p =.0027). The thesis qualitative analyses of the social relations between study participants showed that during the intervention the group showed that the patients motivation rationale expanded over the sixweek period to include a sense of group membership. Thus, the group setting motivated the individuals to pursue personal endeavours beyond their physical limitations. A special esprit de corps and team-spirit reigned in the group based on a reciprocal understanding of what it is like to have cancer and concurrently undergo chemotherapy and fitness training. Furthermore, the analysis of diaries from participants with advanced disease showed that the intervention highlighted situations that allowed each individual, even if only for a short while, to negate illness and accompanying psychological and physical limitations. The potential narrative therapeutic qualities are related to the provision of an opportunity to retrain psychological and physical components to transcend polarities such as healthy vs. sick. Theoretical and analytical frame: The thesis combines psychooncological and sports psychological concepts. The aim is to describe potential psychosocial qualities attached to physical activity, which could contribute to the individual s possibilities of taking action in relation to the psychosocial burdens that result from the cancer disease and the treatment with chemotherapy (e.g. anxiety, depression and social restrictions). The thesis is furthermore based on the hypothesis that it is possible and profitable to use common life situations to create a unique training environment for developing new social relationships and physical abilities through which it is possible for the individual to face problems that may accompany cancer and its treatment with chemotherapy. The analysis and interpretation of the results in each of the included papers represent a 7

14 psychological orientation, namely community psychology, which aims to correct the individualistic bias in psychology. The theory claims that psychological problems should be seen in relation to the life situation in which the person finds himself. This is expressed in the use of narrative theory to describe how the intervention created new shared realities that may challenge earlier potentially problem-saturated understandings of each participant s life situation. Limitations: Because of the nonrandomized design of the study, it has not been possible to determine whether the documented effects are in fact caused by the intervention or whether the effects could be influenced by other mechanisms/events (e.g. effect of the cancer treatment or improvements over time). Furthermore the generalizability of the study is limited. The patients in the study were self-referred, and young and therefore not representative in relation to the entire background population of Danish cancer patients in chemotherapy. Finally, the study was not large enough to ensure cross-cancer comparisons, nor determine causal relationships between the included variables. where advanced cancer can co-exist with qualities and actions that promote health. The concept of structured exercise contains viable psychotherapeutic potentials by allowing the development of alternative bodily and mental realities complying with cancer patients demands and abilities to regain autonomy and commitment to discover and adopt a sense of agency and shared self-reliance. This may put the individual in a position from which problems may become externalized and predisposed to solutions. Conclusions: The results of this study provide evidence that cancer patients (with different diagnoses and at various stages of disease), who participated in a structured, supervised, multidimensional exercise intervention while concurrently being treated with chemotherapy, significantly reduced their levels of anxiety and depression. With reference to/according to the theoretical frame for the thesis the documented reduction in psychological distress may be explained by the fact that the intervention highlighted situations making it possible for the participants, even if only for a short while, to negate psychological and physical constraints. The study results show that the intervention contributed to the creation of new and/or alternative physical realities 8

15 INTRODUCTION This Ph.d. thesis, entitled The Body, Cancer and Psychological Well-being The Psychosocial Impact of a Multidimensional Exercise Programme Offered as a Complementary Intervention to Cancer Patients Undergoing Chemotherapy, was prepared at the University Hospitals Centre for Nursing and Care Research (UCSF) at the the Copenhagen University Hospital. The thesis is framed in the project Body & Cancer, which is briefly described below. The Body & Cancer Project The Body & Cancer project is designed to provide body-focused and socially orientated efforts to support Oncological and Haematological cancer patients at different stages of the disease (evidence vs. no evidence of residual disease), in varying cytostatic treatment regimes, and with a performance stage score of 0-1 (WHO). The project was developed and implemented as a clinical controlled trial by a multidisciplinary research group (physicians, nurses, physiotherapists, psychologist and sociologist) at the Copenhagen University Hospital 1. Aim and Intervention: The aim of the Body & Cancer project was to strengthen the cancer patient undergoing chemotherapy. This was carried out via an intervention known as The Body Package. Patients undertook activities that were classified as either high- or low-intensity. Highintensity activities raised the heart rate considerably and involved heavy resistance 1 Since its inception in 2001, the Body & Cancer Project has been a collaborative effort between three departments at The Copenhagen University Hospital: Centre for Nursing and Care Research (UCSF) under Professor Lis Adamsen, PhD, MScSoc, RN; The Department of Oncology under Professor Mikael Rørth, MD; The Department of Haematology under Professor Niels Borregaard, MD; and The Copenhagen Muscle Research Center (CMRC) under Professor Bengt Saltin, MD. training and cycling on stationary bicycles. Low-intensity activities required lower energy expenditure and included relaxation training, massage and body awareness training (see table 1). The intervention was implemented over a 6-week period, 9- hours weekly in the mornings (see table 2). The patients trained in mixed groups (male and female) of seven to nine patients in each. Specially trained physiotherapists and Oncological/Haematological nurses supervised the intervention, and participated in the physical training with the patients. The programme took place in a specially designed workout room located at the hospital. A carefully selected choice of equipment intended to provide a professional yet relaxed environment to distract from the sterile hospital environment. Due to a lack of locker rooms, patients had to change clothes in a common area located outside of the training room. This area included a lounge where patients were served coffee, tea, fruit and raisins. Principles Behind the Intervention: The intervention was designed to enhance three actions in the patients: to strengthen, relax and encourage awareness using the following principles: 1) Programme efforts were to be oriented towards the patient s potentials rather than deficits. 2) The training would combine grouporientation with individual focus. 3) The intervention would be used to create a forum in which possible friendships could form. Methodology: Cancer patients were attracted to the project by posters and pamphlets in the hospital s outpatient clinic or in the ward. Furthermore recruitment was carried out through efforts made by nurses and physicians to inform patients about the project, after which the patients contacted the project team directly. 9

16 Inclusion criteria: Residence in the greater Copenhagen Council; age between years; a diagnosis of cancer (given at least one month prior); currently undergoing chemotherapy (must have received at least one series of chemotherapy); a performance stage 0-1 (WHO). Patients with prior surgery and/or radiotherapy were included. Exclusion criteria: Brain and/or bone metastases; lasting/sustained thrombocytopenia; cardiovascular symptoms i.e. abnormal blood pressure, signs of cardiac insufficiency and/or recent myocardial infarction. Screening and monitoring: In accordance with the guidelines and safety precautions determined by Winningham et al. [186] and Dimeo et al. [51] daily pre-exercise screening was performed. If one of the following criteria were met, the patient was excluded from the physical training component of the programme on that specific day: Diastolic blood pressure <45 or >95 mmhg; pulse at rest >100/min, temperature >38 C, respiration frequency at rest >20/min, infection requiring treatment with antibiotics, ongoing bleeding, fresh petechiae, bruises, thrombocytes <50 109/l, or leukocytes < /l. Monitoring was carried out by means of a sphygmomanometers (Polar Xtrainer Plus) worn by the patients during physical training as well as through observations made by the nurse. Design: The Body & Cancer project is a prospective, longitudinal clinical controlled trial in three phases: Phase I (exploratory, descriptive phase) was completed in November 2001 and included 27 patients [5]; Phase II (diagnostic testing) was completed in July 2003 and included 88 patients [8]; and the current Phase III (randomization), which involves an experimental group and a control group of 125 patients in each (estimated termination July 2006). The Ph.D. thesis material includes selective data from Phases I and II (n=115) and focuses on the intervention s potential to enhance the patients psychological well-being. BACKGROUND The incidence and prevalence of cancer is increasing. According to the most recent report (November, 2005) from the Cancer Registry at the Danish National Board of Health [57], in 2001 there were new cases of cancer in men and in women, and deaths from cancer (7.760 men and women). A Dane s risk of being diagnosed with cancer before age 75 (lifespan risk is based statistics) is 34% in both male and female. At 31 December 2001, Danes (4% of the population) were estimated to be living with cancer or after treatment for cancer. This figure increased to persons corresponding to 4.3% of the population at the close of 2003 [57]. The Danish National Board of Health estimates that 45% of those individuals with cancer will be cured through treatment; among these about 23% are cured by radiation and/or cytostatic treatment [153]. The development of more advanced and precise methods of cancer screening, examinations and treatment techniques has meant that survival rates for certain types of cancer have improved over the past few decades [138]. An increasing number of cancer patients are offered chemotherapy to treat advanced stages of the disease and as adjuvant treatment after surgery or radiation [37]. Chemotherapy is the preferred current treatment for cancer patients with locally advanced disease and/or disease that has metastasized [79]. However, the treatment targets both cancerous and healthy cells in the body. More specifically, sensitive healthy cells are found in the bone marrow and intestinal tract making these organs particularly prone to side-effects [82]. The most frequently reported side-effects in- 10

17 clude fatigue, nausea and vomiting, diarrhea, constipation and hair loss in addition to neurological side-effects, e.g. poor memory, muscle weakness and sensitivity disorders [76, 77]. From a psychological perspective a cancer diagnosis is a devastating event characterised by shock, disbelief, anger, anxiety, depression and difficulty in performing activities of daily living [179]. Similar emotional turmoil occurs at different transition points along the illness trajectory, that is, at the start of treatment, recurrence, treatment failure and disease progression [134]. Prevalence rates for psychological distress (PD) across specific cancer diagnoses and stages vary from 0% to 46% for depression, from 0.9% to 49% for anxiety, and from 5% to 50% for general psychological distress [182]. Less variation in prevalence rates is found in patients with advanced disease [179]. Referring only to patients with advanced disease, Hotopf et al. [86] estimated that the prevalence of depression ranged from 15% for major depression to at least 30% for all depressive disorders. Bottomley [29] argues that while anxiety is a common psychological symptom in cancer patients, few patients are diagnosed or treated for the symptoms that can occur due to the debilitating nature of anxiety. Physical inactivity can be an important factor in understanding the psychosocial burden that accompanies and follows a cancer diagnosis and anti-cancer treatment. For some cancer patients, diagnosis and treatment are synonymous with a sedentary lifestyle [139]. Changed body image and/or appearance, bodily insecurity and fatigue are some of the influencial factors which may contribute to reduced or lack of physical activity in cancer patients, which in turn may impose an increased sense of fatigue [51]. Furthermore, besides leading to important somatic benefits, physical activity can be an essential source of social support [7]. Hence, a reduction or complete abandonment of physical activity, i.e. in addition to withdrawing from the workforce, can contribute to a social decline, which exposes cancer patients to increased risk of psychological distress [123, 184]. In this regard, several studies have documented that physical inactivity has been associated with, amongst others, depression, dissatisfaction with life and poor selfassessed health [91]. Thus physical activity may play a central role in the explanation and prevention of some of the negative psychosocial consequences of cancer (see model 1). Psychosocial Interventions for Cancer Patients The hypothesis that a psychosocial intervention could positively affect the wellbeing of cancer patients has been researched over the past years [148]. The aim of psychosocial interventions is to improve emotional adjustment and to prevent negative psychosocial consequences of having cancer by increasing the individual s confidence in own abilities to manage the disease [154]. Psychosocial interventions include several strategies: counselling/psychotherapy, behavioural therapy, education and information relay, social support or a combination of these strategies [22, 122, 179]. Clinical controlled trials have demonstrated that interventions including relaxation training have a positive impact on mood disturbances [30, 34], depression [165], anxiety [39; 125], psychological distress [18], and nausea and vomiting [125] in cancer patients undergoing chemotherapy. In a meta-analytical review on the effectiveness of relaxation training in reducing treatment-related symptoms and improving emotional adjustment in acute non-surgical cancer treatment, Luebbert et al. [106] found that relaxation has a significant effect on emotional adjustment variables including depression, anxiety and hostility. Significant positive effects were also found for several treatment-related 11

18 symptoms such as nausea, pain, blood pressure, and pulse rate. Similarly, sports science and psychology have shown that healthy athletes use progressive relaxation, body awareness and mental training to release tension and to control anxiety [137, 180]. In addition to relaxation training, there is some initial documentation that shows the value of using massage on cancer patients receiving chemotherapy or radiation therapy. In a quasi-experimental study on the use of therapeutic massage in hospitalized cancer patients, Smith et al. [167] showed significant response interactions for pain, symptom distress, and sleep. Sleep improved only slightly for the participants receiving massage while it deteriorated significantly for those in the control group. In a randomized, prospective, cross-over intervention study, Post-White et al. [143] tested the effects of massage therapy (MT) and healing touch (HT), in comparison to presence alone or standard care, in inducing relaxation and reducing symptoms in 230 patients receiving cancer chemotherapy. MT lowered anxiety and HT lowered fatigue while both lowered total mood disturbance. The authors conclude that MT and HT are more effective than presence alone or standard care in reducing pain, mood disturbance, and fatigue in patients receiving cancer chemotherapy. With respect to research related to the effect of social networks and group therapy based interventions, previous research with self-help groups, showed positive psychosocial effects in patients with mixed diagnoses [3, 6, 7, 190]. Contact with other people, forming friendships, new behavioural patterns, increased self-confidence, and the acquisition of new knowledge are some of the significant effects emphasized by participants in support and self-help groups [21, 73, 74]. Emotional support and interventions that assist cancer patients to cope with the disease have highlighted intimacy as an important factor for women, appealing to their preference for small group discussion. In a study involving male cancer patients, it was found that group work designed for conducting physical training proved to be a welcome addition for participants whose lives were otherwise characterized by uncertainty, isolation, fatigue and lack of motivation. It gave the men an increased sense of physical awareness and strength [7]. Physical Activity for Cancer Patients Undergoing Chemotherapy In a meta-analysis by Meyer & Mark [122] that synthesized results of published randomized, controlled-outcome studies of psychosocial interventions with adult cancer patients, the authors point to the fact that collectively viewed, psychosocial interventions only had a moderate effect on emotional adjustment measures. The authors furthermore conclude that effect sizes for treatment-control comparisons did not significantly differ among several categories of treatment: behavioural interventions, non-behavioural counselling and therapy, informational and educational methods, organized social support provided by other patients, and other nonprofessional interventions. In this connection, physical activity is one strategy, which over the past decade gained footing as a complementary treatment form within the field of cancer. Preliminary results indicate that physical activity can improve cancer patients physical performance [107, 157] and quality of life [32, 42, 43, 44, 45, 63, 138]. Other results focused on reducing treatment side-effects [52, 132, 155, 156, 158, 176, 185]. Low to moderate exercise interventions of varying durations appear to be the standard across existing studies, and few of the studies were carried out with cancer patients undergoing cytostatic treatment [50, 51, 94, 107, 155, 188, 189]. Predominantly, studies have examined the effects of a single activity, e.g. cardiovascular training on stationary bicycles rather than resistance training as the exercise modality [65]. Additional studies 12

19 are needed to provide evidence of whether specific patient groups, i.e. at different stages of the disease and/or with different diagnoses and treatments, can benefit from exercise, to what extent, and in which forms. Due to a lack of evidence, no recommendations can be issued at present [19, 105]. In a few instances researchers have focused explicitly on the benefits of physical exercise on psychological distress (PD) in patients undergoing chemotherapy [27, 51, 94, 124, 159]. Mock et al. [124] examined the effects of a comprehensive walking/support group programme on 14 women (mean age = 44 years) receiving adjuvant chemotherapy for breast cancer (86% stage II) following surgery. Measures of psychosocial adjustment showed improved adaptation in subjects who completed the walking/support group programme. Segar et al. [159] evaluated the effect of 10 weeks of aerobic exercise (four days/ week; minutes/session) on depression (Beck Depression Inventory) and anxiety (State-Trait Anxiety Inventory) symptoms in a randomized study that included 24 breast cancer survivors (mean age of the sample was 48.9 years; mean time following surgery was 41.8 months; ranging from 1 to 99 months). Pre- to posttest analyses revealed that women who exercised had significantly less depression and state and trait anxiety over time compared to those in the control group. Blanchard, Courneya and Laing [27] investigated the effects of an acute bout of exercise on state anxiety (State Anxiety Inventory) in 34 stages I or II breast cancer survivors ranging in age from The authors concluded that acute exercise might be an effective intervention in reducing state anxiety in breast cancer survivors, especially in those with high state anxiety. In a non-randomised trial, Kolden et al. [94] examined the feasibility and potential psychological benefits of group exercise training (aerobic fitness, strength, and flexibility) delivered in a structured format three times a week for 16 weeks in 40 women over the age of 45 with primary breast cancer. Results demonstrated that participants significantly decreased levels of depression (Beck Depression Inventory, Hamilton Depression Scale), while no significant changes were observed in anxiety (State-Trait Anxiety Inventory). These studies were based on small population groups and included women with stages I- II breast cancer who were undergoing adjuvant chemotherapy. In only one case [51] did the authors include patients in chemotherapy with other types of cancer than breast cancer. Dimeo et al. [51] studied the effect of a daily exercise programme during hospitalization in haematological patients receiving high dose chemotherapy followed by autologous peripheral blood stem cell transplantation while hospitalised (training group; n=27). The authors found that aerobic exercise could reduce psychological distress in hospitalized cancer patients undergoing chemotherapy [51]. This body of research indicates that relaxation training, massage, group support and physical activity each have a positive impact on the psychosocial well-being of cancer patients. We decided to test an intervention that combined all of these elements in order to maximize the effects. Hypotheses and Aim The thesis hypotheses are based on the assumption that the intervention would reduce negative factors (anxiety and depression); and strengthen positive factors (selfefficacy, self-esteem and social interaction). These assumptions were combined into an overall assumption that the intervention would improve the patients psychological well-being. The following hypotheses about the intervention were formulated prior to the investigation: The intervention would reduce anxiety. The intervention would reduce depression. 13

20 The intervention would increase sense of perceived self-efficacy and selfesteem. The intervention would strenghten social interaction with others in a similar situation. Perceived self-efficacy was operationalized into measures of self-reported postprogramme leisure time physical activity level (see Paper III); and the concept of self-esteem was made apparent in the exploration of the intervention s effect on changing self-identity in the form of narratives (see Paper IV). Finally the hypothesis of strengthening social interaction was concretisized in the concept of group cohesion (see Paper II). Thus, the aim of this thesis was to examine the psychosocial effects of a multidimensional, supervised exercise programme for cancer patients undergoing chemotherapy. The main objectives of the various studies (Papers I-IV), which constitute this thesis, are: 1. To examine the effects of the exercise intervention on self-reported anxiety and depression (Paper I). 2. To examine the patients experiences with group cohesion during the intervention and changes in social and emotional aspects of health-related quality of life (HRQOL) outcomes (Paper II). 3. To examine the extent to which the patients adhered to physical activity 1-3 months post-programme (Paper III). 4. To explore the narrative psychological impact of the intervention in a purposive sample of advanced disease cancer patients (Paper IV). THEORETICAL FRAMEWORK (PRECONCEPTION) Below is an account of the theoretical preconceptions drawn into the project by the researcher. The account comprises professional perspectives and theoretical frames of reference that are likely to have affected the way in which data was collected and analyzed [117, 118]. During the last years, psychologists have focused their efforts on cancer in three different ways [129]. First, psychologists have researched and intended to change the behaviour of people who expose themselves to risk factors that cause cancer, e.g. tobacco, tanning/sun exposure, food and sedentary lifestyles, etc. [e.g. 38]. Secondly, researchers within the field of psychology have questioned the extent to which personality traits and/or mental state, via brain processes, could impact the body s physiology and potentially increase the risk of developing cancer or prolong survival [129, 191]. Finally, a third group of psychologists have studied and carried out interventions on the emotional sequelae related to cancer and anti-cancer treatment, including anxiety, depression and reduced quality of life [e.g. 13, 28, 149]. This thesis originates from this last theme. Seen from a psychological point of view, the aim of the intervention was to endorse mechanisms that allowed the individual and the community to take action in burdening situations. This is not the same as alleviating a patient s medical condition but rather to increase his ability to cope with the situation in a way that promotes his competencies. One way of doing this would be to identify existing scenarios and solutions and weighing their strengths instead of considering deficits, symptoms and burdens [16]. The analysis and interpretation of the (qualitative) results in each of the thesis papers represent a psychological orientation, namely community psychology [133], which aims to correct the individualistic bias in psychology. Community psychology (CP) rejects the almost exclusive emphasis in psychology upon assessing and modifying the behaviour, emotions and 14