Psycho-oncology research

Transcription

1 Psycho-oncology research an international overview Dr. Saskia Duijts Psycho-oncology Ugent March 9 th

2 Who am I? Senior researcher VU University Medical Center and the Netherlands Cancer Institute, Amsterdam Fellow Dutch Cancer Society 2

3 Who am I? PhD Occupational Health Epidemiology Identification of employees at risk for sickness absence due to psychosocial health complaints and prevention of sickness absence. Postdoc Cancer Epidemiology and Psychosocial Oncology Effectiveness of physical exercise and cognitive behavioural therapy in breast cancer patients experiencing acute menopausal symptoms due to treatment. Senior researcher 2010 present (2014: fellowship) Combination of occupational health and cancer epidemiology / psycho-oncology 3

4 Who am I? Dutch Association for Psychosocial Oncology (NVPO) Editor-in-chief Psychosocial Oncology Board member; member of several committees of the association Associate editor: European Journal of Cancer Care 4

5 Content lecture Psycho-oncology research in international perspective History of (research in) psycho-oncology Where do we stand these days internationally? o Which institutes are well known in psycho-oncology? o Who are the leading persons in this field? o What are the themes we are working on right now? o Which journals do we publish in? 5

6 Content lecture From the world to the Netherlands Dutch Association for Psychosocial Oncology Year Index Psycho-oncology research Focus on one specific research line: cancer and work Introduction in cancer and work What do we know? / What don t we know? The future of psycho oncology research 6

7 Psycho-oncology research in international perspective History of (research in) psycho-oncology The beginnings of psycho-oncology date to the mid 1970s o First stigma: speaking about cancer became possible o Second stigma: negative attitude towards psychological problems diminished : psycho-oncology became a subspecialty of oncology 2000 present: o Significant base of literature o Training programs o Research agenda concerns the whole cancer continuum 7

8 History of (research in) psycho-oncology Several studies published in Psychosomatic Medicine before ; Blumberg et al described A possible relationship between psychological factors and human cancer. 1955; Reznikoff et al published Psychological factors in breast cancer: a preliminary study of some personality trends in patients with cancer of the breast. 1956; Fisher et al described The relationship of body image with site of cancer. These studies were of interest to mental health professionals, but not to the field of oncology. 8

9 History of (research in) psycho-oncology Mid 50: several prospective studies examined the psychological response of hospitalized patients to cancer Massachusetts General Hospital Memorial Sloan Kettering Cancer Center o Guilt and shame o Change of communication patterns over the stages of illness 60s: debate about do tell or never tell was active in the U.S. 61: 90% of the physicians did not reveal the diagnosis 78: 97% of the physicians were telling patients their cancer diagnosis 9

10 History of (research in) psycho-oncology Establishment of the International Psycho-Oncology Society (IPOS) Pioneering work at the Karolinska Institute in Stockholm In the Netherlands, van Dam developed the first psycho-oncology unit in Amsterdam and together with Aaronson, he developed a quality-of-life scale Razavi, in Belgium, performed early studies of doctor-patient communication and interventions to reduce distress But also in Canada, Australia, the US and many other counties developments were seen in the field of psycho-oncology. 10

11 History of (research in) psycho-oncology 1983: Journal of Psychosocial Oncology 1989: Handbook of Psycho-oncology 1992: Psycho-Oncology 1998: Psycho-Oncology 11

12 History of (research in) psycho-oncology 12

13 John Ruckdeschel Article (1994): Psychosocial oncology research: Where we have been, where we are going, and why we will not get there. Behavioural and Psychosocial Cancer Research conference Quality of life, symptom control and social support Patient responses to cancer-related stressors and influence negative consequences of those responses 13

14 John Ruckdeschel 14

15 William Breitbart Editorial (1998): Psycho-oncology research: the road travelled, the road ahead. Research in the rapidly evolving field of: Psycho-oncology Psychosocial oncology Behavioural oncology Psychiatric oncology New areas, such as impact on families, sexual dysfunction, problems of survivorship, issues related to genetic high risk, and palliative care. 15

16 Gary Rodin Editorial (2008): New findings in psychosocial oncology research. Global effort to improve: prevention detection treatment of psycho oncological side effects. Research has advanced, but a lot still has to be learned. 16

17 Psycho-oncology research in international perspective Where do we stand these days internationally? Which institutes are well known in psycho-oncology? Who are the leading persons in this field? What are the themes we are working on right now? Which journals do we publish in? 17

18 Where do we stand these days internationally? Which institutes are well known in psycho-oncology? 18

19 Where do we stand these days internationally? Which institutes are well known in psycho-oncology? Memorial Sloan Kettering Cancer Center o Department of Psychiatry and Behavioral Sciences 19

20 Which institutes are well known in psycho-oncology? Memorial Sloan Kettering Cancer Center Prevention, detection and treatment of psycho-oncological issues o Reduction of cancer risk behaviors o Adherence to cancer screening o Symptom management o Treatment decision making o Palliative care o Rehabilitation o Survivorship o Increasing access to cancer care for ethnic minorities 20

21 Which institutes are well known in psycho-oncology? Memorial Sloan Kettering Cancer Center Six research priorities: o Cancer prevention; Health promotion o Neurocognitive psychology o Psychotherapy laboratory o Communication skills o Community outreach o Observational/symptom studies 21

22 Where do we stand these days internationally? Which institutes are well known in psycho-oncology? Massachusetts General Hospital Center for Cancer Research o Psychiatric Oncology 22

23 Which institutes are well known in psycho-oncology? Massachusetts General Hospital Center for Cancer Research Improving the recognition and treatment of psychological distress in the setting of cancer treatment. o Depression and mental healthcare needs in elderly cancer patients o Adherence to oral chemotherapy in patients with cancer o Are childhood cancer survivors underinsured? o Assessing quality of life for adolescent and young adult CNS tumor survivors 23

24 Where do we stand these days internationally? Which institutes are well known in psycho-oncology? Dana-Farber Cancer Institute o Department of Psychosocial Oncology and Palliative Care 24

25 Which institutes are well known in psycho-oncology? Dana-Farber Cancer Institute The goals are to enhance quality of life and well-being, and to relieve suffering in all its dimensions throughout illness, survivorship, and bereavement. o The relationship between end-of-life communication and costs of care at the end of life o Religious coping and its association with the receipt of intensive life-prolonging care o The impact of young children on parents' end-of-life treatment decisions and quality of life 25

26 Which institutes are well known in psycho-oncology? United States of America The Ohio State University, Colombus Anderson Cancer Center, Houston Comprehensive Cancer Center, Los Angeles National Cancer Institute, Bethesda Havard Medical School, Boston Cornell University, New York 26

27 Which institutes are well known in psycho-oncology? Canada University of Calgary / Tom Baker Cancer Center University of Alberta University of Toronto McGill University, Montreal 27

28 Where do we stand these days internationally? Which institutes are well known in psycho-oncology? The Danish Cancer Society Research Center o Survivorship 28

29 Which institutes are well known in psycho-oncology? The Danish Cancer Society Research Center Social Inequality in Survivorship o The differences in prognosis and consequences after cancer by social position are explored Childhood Cancer Survivorship o Psychosocial late effects; Reproductive consequences; Adolescents and Young Adults (AYA s) are amongst others explored Psychological and Health Behavior Aspects of Life after Cancer o Lifestyle changes; Rehabilitation; Bereavement; Psychological late effects are explored 29

30 Where do we stand these days internationally? Which institutes are well known in psycho-oncology? The Netherlands Cancer Institute o Department of Psychosocial Oncology and Epidemiology 30

31 Which institutes are well known in psycho-oncology? The Netherlands Cancer Institute Quality of life o the development and applications of quality of life assessment tools for use in clinical research and clinical practice o the development and testing of behavioral and psychosocial interventions to reduce symptom burden and improve the quality of life of patients with cancer 31

32 Which institutes are well known in psycho-oncology? The Netherlands Cancer Institute Genetic counseling o the uptake and long-term psychosocial impact o early detection of psychosocial problems and the development of psycho-educational interventions o the organization of the psychosocial healthcare for cancer patients and their high risk relatives Cognitive changes o the investigation of the incidence, nature, severity and determinants of cognitive problems 32

33 Which institutes are well known in psycho-oncology? Europe The University of Leeds, UK University College London, UK King s College London, UK Karolinska Institute, Sweden Australia The University of Sydney 33

34 Where do we stand these days internationally? Who are the leading persons in this field? 34

35 Who are the leading persons in this field? Memorial Sloan Kettering Cancer Center William Breitbart Jimmie Holland Comprehensive Cancer Center, Los Angeles Patricia Ganz; late effects of cancer treatment, and improving the quality of care for cancer survivors 35

36 Who are the leading persons in this field? Moffitt Cancer Center University of South Florida Paul Jacobsen; behavioral and psychosocial aspects of cancer Monash University Australia David Kissane (also: MSKCC); psycho-oncology; group and couples therapy 36

37 Who are the leading persons in this field? Maggie Watson Hanneke de Haes Phyllis Butow Luigi Grassi Barry Bultz 37

38 Who are the leading persons in this field? Alex Mitchell Kerry Courneya Neil Aaronson James Coyne Christoffer Johansen Lea Baider 38

39 Where do we stand these days internationally? What are the themes we are working on right now? 39

40 Where do we stand these days internationally? What are the themes we are working on right now? Prevention and screening Prevention o Tobacco use and cessation o Diet o Exercise o Sun exposure 40

41 What are the themes we are working on right now? Prevention Tobacco use and cessation Smoking after cancer diagnosis has a negative impact on overall survival in patients with lung, head and neck, prostate, breast and cervical cancer Medical complications can be diminished when patients stop smoking at least four weeks before surgery Patients who remain smoke-free after treatment report lower level of depression and anxiety 41

42 What are the themes we are working on right now? Prevention Diet Dietary factors account for 30% of cancers in developed and 20% of cancers in developing countries Mechanism is complex; directly through exposure to certain nutrients, indirect through the effect on energy balance, body fat and obesity Increased risk: salt (stomach), red and processed meat (colorectal/pancreas/prostate), alcohol (liver/breast/esophageal), coffee (pancreas) Decreased risk: fruit and vegetables intake 42

43 What are the themes we are working on right now? Screening Colorectal, cervical, breast and prostate cancer screening Sociodemographic, access and psychosocial correlates Adherence to follow-up diagnostics, repeat screening and treatment recommendations 43

44 What are the themes we are working on right now? Screening for psychosocial complaints 44

45 What are the themes we are working on right now? Distress thermometer One-item scale assessing level of distress Problem list to identify sources of distress Sensitive to changes over time; performs less well identifying major disorders Article by Grassi and Jacobsen (Psycho Oncology, 2014) 45

46 number of papers Where do we stand these days internationally? What are the themes we are working on right now? Prevention and screening 80 Number of papers/year year 46

47 What are the themes we are working on right now? Physical functioning The cancer survivor group being studied Timing of the intervention The primary endpoint of interest Research so far indicates that post-diagnosis exercise is negative associated with disease recurrence and cancer-specific mortality. However, it has not been demonstrated that exercise can alter the course of the disease or extend overall survival. 47

48 Where do we stand these days internationally? What are the themes we are working on right now? Physical functioning 48

49 What are the themes we are working on right now? Cognitive functioning Brain tumors / non-brain tumors Headaches, seizures, intracranial pressure, cognitive impairment Disease-related / treatment-related Impact of cognitive changes on functional capacity and quality of life 49

50 Where do we stand these days internationally? What are the themes we are working on right now? Cognitive functioning 50

51 What are the themes we are working on right now? Communication Effect doctor-patient communication on outcomes Darius Razavi Communication skills training (CST) research o Breaking bad news o Discussing prognosis o Reaching a shared treatment decision o Responding to difficult emotions o Running a family meeting o Transitioning to palliative care and end-of-life 51

52 Where do we stand these days internationally? What are the themes we are working on right now? Communication 52

53 What are the themes we are working on right now? Work 3.5 million new cancer cases in 2012 (Europe), 50% of working age 62% has returned to work at one year follow-up Problems with returning to work, but also at work 53

54 Where do we stand these days internationally? What are the themes we are working on right now? Work 54

55 What are the themes we are working on right now? Palliative care / end-of-life Sexuality / intimacy Spirituality Genetics 55

56 What are the themes we are working on right now? 56

57 What are the themes we are working on right now? Reviews and meta-analyses Psychosocial interventions to improve quality of life and emotional wellbeing for recently diagnosed cancer patients (Karen Galway, 2012) nurse-delivered interventions comprising information combined with supportive attention may have a beneficial impact on mood in an undifferentiated population of newly diagnosed cancer patients. Systematic review and meta-analysis of psychological and activitybased interventions for cancer-related fatigue (Paul Jacobsen, 2007) limited support for psychological interventions to manage cancer-related fatigue Psychological interventions for distress in cancer patients: a review of reviews (James Coyne, 2006) the more rigorous the review, the less likely it is to conclude there is evidence that psychological interventions are effective. 57

58 Where do we stand these days internationally? Which journals do we publish in? 58

59 Which journals do we publish in? Lancet Oncology (IF 24.73) Journal of Clinical Oncology (IF 17.96) European Journal of Cancer (IF 4.82) British Journal of Cancer (IF 4.82) Psychosomatic medicine (IF 4.09) Psycho-Oncology (IF 4.04) BMC Cancer (IF 3.32) Journal of Cancer Survivorship (IF 3.29) Supportive Care Cancer (IF 2.49) European Journal of Cancer Care (IF 1.76) Journal of Psychosocial Oncology (IF 1.07) 59

60 From the world to the Netherlands 60

61 From the world to the Netherlands Dutch Association for Psychosocial Oncology (NVPO) Part of Federation of psychosocial oncology societies (FIPOS) 25 recognized societies (2006) To develop and contribute to knowledge regarding psychosocial oncology and to support professional, accessible and timely psychosocial care as part of overall cancer care Several committees; scientific research Year Index Psycho-oncology Research 2013 and

62 Dutch Association for Psychosocial Oncology Overview researchers involved in psycho-oncology Research institutes Universities Medical centers In total > 300 researchers Questionnaire Title Researchers / institute involved Funding Introduction Aim and research questions Clinical relevance and knowledge translation 62

63 Dutch Association for Psychosocial Oncology Year Index research projects 12 categories 63

64 Year Index 2013 Psychosocial functioning (N = 14) Overall theme; research projects not fitting in other categories Wide variety in cancer types From online programs to fear for recurrence research Example: BREATH (breast cancer) o Randomized controlled trial o Effectiveness of an online self-help program o Four months o Decrease distress and increase empowerment o National implementation of the website in

65 Year Index 2013 Physical functioning (N = 15) The majority focuses on physical fitness during treatment, mostly chemotherapy Other subjects are: o fighting fatigue through exercise o obese cancer patients o physical functioning of head and neck cancer patients Example: PACES (breast / colorectal): Effectiveness of low intensity program (at home) and a moderate intensity program (guidance physical therapist) on cardiovascular condition, strength and fatigue during chemo-therapy 65

66 Year Index 2013 Communication / Patient information (N = 16) Health care provider-client interaction Risk communication Information needs and transfer Patient preferences and choices First consultation/breaking bad news Example: the role of the patient o Level of participation of patients regarding treatment decisions o Factors inhibiting patient participation o Effectiveness patient centered communication interventions 66

67 Year Index 2013 Other categories Cognitive functioning (N = 6) Pediatrics (N = 4) Relatives (N = 3) Screening / Prevention / Quality of Care (N = 9) Sexuality / Intimacy (N = 8) Palliative care (N = 3) Genetics (N = 10) Spirituality (N = 3) Work / Survivorship (N = 12) Context 19 research groups / institutes; collaborations 33 different funding bodies Major providers: Dutch Cancer Society / Alpe d HuZes, Pink Ribbon Foundation 67

68 Focus on one specific research line: cancer and work 68

69 Cancer and Work Return to work (RTW) has been a research topic for over 40 years 50% of those diagnosed with cancer in Europe are of working age RTW is important for: Individual o Increase of self-esteem, self-worth o Sense of normalcy o Social relationship o Financial security Society o Contribution to society o Reduce work incapacity 69

70 Cancer and Work At 6 months after diagnosis 40% (range 24 72%) At 12 months after diagnosis 62% (range 50 81%) At 18 months after diagnosis 73% (range 64 82%) At 24 months after diagnosis 89% (range 84 94%) At 5 years after diagnosis 67% of patients were able to work 70

71 Cancer and Work Factors associated with RTW Younger age Male Higher education Less physical symptoms Cancer type (e.g., lung, head and neck) Treatments (e.g., combined; hormonal) Lower length of sick leave (Moderate) cancer disclosure to colleagues Flexible working arrangements Perceived employer accommodation 71

72 Cancer and Work RTW interventions Only three interventions aimed primarily at enhancing return to work or employment status. Only one of the four controlled studies the intervention increased return to work significantly and in the other studies the results were insignificant 72

73 Cancer and Work Fellowship Dutch Cancer Society Person Work Cancer 73

74 Cancer and Work Fellowship Dutch Cancer Society RTW as behaviour: you either go or don t go to work. Behavioural determinants are important: o Attitude o Self-efficacy o Social support / pressure o Motivation o Coping Apply new knowledge in cancer and work research 74

75 Future of psycho-oncology research 75

76 Future of psycho-oncology research Research is moving through three phases: Basic research Applied research Dissemination Efforts to translate research findings to clinical practice Diffusion (passive; information for potential audience; publication in journal) Dissemination (more active; tailored information for intended audience; practice guidelines) Implementation (even more active; enable health care providers to deliver care in a manner consistent with research evidence) 76

77 Future of psycho-oncology research The most immediately important task of psycho-oncology is to close the yawning gap between current knowledge and actual clinical care of patients. 77

78 Future of psycho-oncology research The aim is to ensure that within the next decade, psychosocial care is acknowledged as a vital part of the patient journey and accepted globally as good practice within cancer care. 78

79 Future of psycho-oncology research There is a need for: Behavioural and social scientists to be integral to the planned lifestyle changes to reduce world cancer incidence and morbidity Psychosocial care for patients and their families and carers An endorsement to assess distress as the 6th vital sign A declaration that mental health within cancer health is a human right 79

80 Thanks! Questions? Contact details Dr. Saskia Duijts Senior researcher / Fellow Dutch Cancer Society VU University Medical Center EMGO+ Institute for Health and Care Research Department of Public and Occupational Health Van der Boechorststraat 7 - C573 P.O. Box MB Amsterdam the Netherlands T: +31 (0) (mo-tue-fri) E: s.duijts@vumc.nl Postdoctoral Research Fellow The Netherlands Cancer Institute Department of Psychosocial Research and Epidemiology Plesmanlaan CX Amsterdam The Netherlands T: +31 (0) (wed-thu) E: s.duijts@nki.nl 80