1. Rehabilitation of cancer patients and survivors -is general practice in or out? A team of Danish researchers Christian Wulff Ann Dorrit Guassora Marianne K Thygesen Lise Holm Dorte Gilså Hansen Symposium S19

2. Welcome

3. Content Background – What is rehabilitation? – Cancer care and rehabilitation the patient perspective the GP perspective Cancer rehabilitation in general practice: Ungoing research – Nurse led case management: one way to support rehabilitation – The role of the GP: as seen by the patient and the GP – A new elicitation technique to fascilitate a difficult talk with the patient – Focus on rehabilitation during hospitalisation and by proactive GPs – Social inequality Summary Comments and discussion: Is general practice in or out?

4. Content Background – What is rehabilitation? – Cancer care and rehabilitation the patient perspective the GP perspective Cancer rehabilitation in general practice: Ungoing research – Nurse led case management: one way to support rehabilitation – The role of the GP: as seen by the patient and the GP – A new elicitation technique to fascilitate a difficult talk with the patient – Focus on rehabilitation during hospitalisation and by proactive GPs – Social inequality Summary Comments and discussion: Is general practice in or out?

5. Content Background – What is rehabilitation? – Cancer care and rehabilitation the patient perspective the GP perspective Cancer rehabilitation in general practice: Ungoing research – Nurse led case management: one way to support rehabilitation – The role of the GP: as seen by the patient and the GP – A new elicitation technique to fascilitate a difficult talk with the patient – Focus on rehabilitation during hospitalisation and by proactive GPs – Social inequality Summary Comments and discussion: Is general practice in or out?

6. Content Background – What is rehabilitation? – Cancer care and rehabilitation the patient perspective the GP perspective Cancer rehabilitation in general practice: Ungoing research – Nurse led case management: one way to support rehabilitation – The role of the GP: as seen by the patient and the GP – A new elicitation technique to fascilitate a difficult talk with the patient – Focus on rehabilitation during hospitalisation and by proactive GPs – Social inequality Summary Comments and discussion: Is general practice in or out?

7. Content Background – What is rehabilitation? – Cancer care and rehabilitation the patient perspective the GP perspective Cancer rehabilitation in general practice: Ungoing research – Nurse led case management: one way to support rehabilitation – The role of the GP: as seen by the patient and the GP – A new elicitation technique to fascilitate a difficult talk with the patient – Focus on rehabilitation during hospitalisation and by proactive GPs – Social inequality Summary Comments and discussion: Is general practice in or out?

8. Content Background – What is rehabilitation? – Cancer care and rehabilitation the patient perspective the GP perspective Cancer rehabilitation in general practice: Ungoing research – Nurse led case management: one way to support rehabilitation – The role of the GP: as seen by the patient and the GP – A new elicitation technique to fascilitate a difficult talk with the patient – Focus on rehabilitation during hospitalisation and by proactive GPs – Social inequality Summary Comments and discussion: Is general practice in or out?

9. Content Background – What is rehabilitation? – Cancer care and rehabilitation the patient perspective the GP perspective Cancer rehabilitation in general practice: Ungoing research – Nurse led case management: one way to support rehabilitation – The role of the GP: as seen by the patient and the GP – A new elicitation technique to fascilitate a difficult talk with the patient – Focus on rehabilitation during hospitalisation and by proactive GPs – Social inequality Summary Comments and discussion: Is general practice in or out?

10. Content Background – What is rehabilitation? – Cancer care and rehabilitation the patient perspective the GP perspective Cancer rehabilitation in general practice: Ungoing research – Nurse led case management: one way to support rehabilitation – The role of the GP: as seen by the patient and the GP – A new elicitation technique to fascilitate a difficult talk with the patient – Focus on rehabilitation during hospitalisation and by proactive GPs – Social inequality Summary Comments and discussion: Is general practice in or out?

11. Background Unmet needs for rehabilitation Lack of continuity of care Patients – left in limbo Room for improvement! The general practitioner – is often not involved during diagnosis and treatment – Knowledge about patient and relatives Patients are doubtful about the general practitioner’s competences and possibility to support Evidence is llimited

12. Rehabilitation – the WHO perspective A process aimed at enabling persons with disabilities to reach and maintain their optimal physical, sensory, intellectual, psychiatric and/or social functional levels, thus providing them with the tools to change their lives towards a higher level of independence. Rehabilitation may include measures to provide and/or restore funtions, or compensate for the loss or absence of a function or for a functional limitation. The rehabilitation process does not involve inital medical care. It includes a wide range of mesures and activities from more basic and general rehabilitation to goal- oriented activities, for instance vocational rehabilitation.

13. Rehabilitation – the WHO perspective A process aimed at enabling persons with disabilities to reach and maintain their optimal physical, sensory, intellectual, psychiatric and/or social functional levels, thus providing them with the tools to change their lives towards a higher level of independence. Rehabilitation may include measures to provide and/or restore funtions, or compensate for the loss or absence of a function or for a functional limitation. The rehabilitation process does not involve inital medical care. It includes a wide range of mesures and activities from more basic and general rehabilitation to goal- oriented activities, for instance vocational rehabilitation.

14. What is then rehabilitation? A goal-oriented collaboration between a citizen, peers and professionals A proces aimed at enabling persons – to reach and maintain their optimal physical, sensory, intellectual, psychiatric and/or social functional level – to provide them with tools to change their lives towards a higher level of independence

15. The cancer care pathway Lifestyle, health promotion, primary prevention Screene Perceived symptoms, iatrogene treshold Which symptoms are predictive for what? Primary diagnostics incl. waiting times Final diagnostics Treatment Rehabilitation Recurrence of disease Terminal Dying Support to relatives Need for GP Crisis

16. Rehabilitation of cancer patients May – start at diagnosis – continue during treatment, palliation and survivorship – include the general practitioner – include retraining Should be included in the optimal cancer care pathway

17. Rehabilitation of cancer patients and survivors How and when may the GP play an important role? Is general practice in or out?

18. Content Background – What is rehabilitation? – Cancer care and rehabilitation the patient perspective the GP perspective Cancer rehabilitation in general practice: Ungoing research – Nurse led case management: one way to support rehabilitation – The role of the GP: as seen by the patient and the GP – A new elicitation technique to fascilitate a difficult talk with the patient – Focus on rehabilitation during hospitalisation and by proactive GPs – Social inequality Summary Comments and discussion: Is general practice in or out?

19. Case management and rehabilitation Christian Wulff PhD fellow, MD Research Unit of General Practice, Aarhus Aarhus University

20. Case management: Agenda The case management (CM) concept Efficacy of CM in cancer care pathways A Danish nurse-led CM trial at a surgical ward – Interaction with GPs

21. Case Management (CM) Purpose: ”…to link and optimize quality and cost-effective care in both hospital and community settings.” “Its underlying premise is that everyone benefits when clients reach their optimum level of wellness, self- management, and functional capability…..” http://www.ccmcertification.org/

22. “Based on the needs and values of the client, and in collaboration with all service providers, the case manager links clients with appropriate providers and resources throughout the continuum of health and human services and care settings, while ensuring that the care provided is safe, effective, client-centered, timely, efficient, and equitable.” The Case manager http://www.ccmcertification.org/ ? The work of the GP

23. Case management Most often conducted by nurses The setting of the intervention vary – In-patient CM – Community CM (=home nursing?) – In-patient-to-community CM Complex intervention → risk of black box Optimal CM activities and ’dosage’ unknown ”CM is still believed to be a good method for safeguarding continuity for the most complex patients”

24. Efficacy of CM in cancer care pathways? Traditional medical outcomes Related to the process of treatment and care Costs Outcomes studied in seven RCT trials: Because of scarcity of studies, diversity of outcomes studied, and diversity of instruments used, no conclusion could be made. CM might improve patient reported outcomes (Quality-of-Life and satisfaction with care)… Wulff et al, BMC Health Serv Res. 2008 Nov 6;8:227

25. The nurse led case management trial Overall research question – Do nurse case managers enhance continuity of care in cancer care pathways? Methods – Randomized controlled trial – Two arms – 280 patients Patients – All colorectal cancer patients at a surgical department at Aarhus University Hospital

26. Undertakes needs assessment + identifies problems Coordinates health care services between providers (shared care) Notifies involved health care professionals (GP) about care plan and potential problems Offers psychosocial support to patient and relatives REHABILITATION What does the nurse case manager do?

27. Mode of contact With patients and relatives – Regular patient needs assessment meetings – Proactive telephone contacts – Reactive contact person function With health care professionals – Participation in the multidisciplinary meetings – Ad hoc in-person or per telephone – Letters to GPs underpinning physician discharge letter information

28. Tools Detailed manual Introductory program and pilot intervention CM paper chart for each patient Computer systems are used to monitor care pathways and to notify GP and other health care professionals

29. Outcomes Primary outcomes – Patient evaluations of care pathways (ad hoc, pilot tested patient satisfaction questionnaire – Patient assessed “Quality of Life” (EORTC QLQ-C30 questionnaire) Secondary outcomes – Use of health care services ( GPs, emergency department, planned and emergency admission, total length of hospitalisation) – Care process measures (time measures) – GPs’ evaluations of continuity of care (questionnaire)

30. Perspective In a couple of years we will know –if CM as designed by us is a meaningful organizational method to safeguard continuity of care for Danish cancer patients

31. -Thank you for your attention!

32. Content Background – What is rehabilitation? – Cancer care and rehabilitation the patient perspective the GP perspective Cancer rehabilitation in general practice: Ungoing research – Nurse led case management: one way to support rehabilitation – The role of the GP: as seen by the patient and the GP – A new elicitation technique to fascilitate a difficult talk with the patient – Focus on rehabilitation during hospitalisation and by proactive GPs – Social inequality Summary Comments and discussion: Is general practice in or out?

33. The role of the GP during cancer treatment: how patients and GPs see it Ann Dorrit Guassora, MD, PhD Research Unit of Generel Practice University of Copenhagen

34. Background The GP perspective – ”When the patients get cancer, they stop seeing me” Information from the hospitals The role of the GP in the care of cancer patients during the time when they are treated in hospital

35. Methods Cancer patients – 12 individual interviews General practitioners – 2 focus group interviews

36. The current role of the GP during treatment The GP perspective – Often they did not have any role – Support and discussions ”What we have to offer is more about the existential questions, their worries, their anxiousness, their families, the relationship with their children, and..” GP4S

37. The current role of the GP during treatment The GP perspective – Depends on the prior relation and the quality of the contact – Continuous contact with patients who had few ressources ”Maybe it’s exactly our job: to take care of the ones who are not educated and the poorest of our patients.” GP4S

38. The current role of the GP during treatment The patient perspective - Most patients did not need their GP during treatment ”No, I did not need him. Because I had it from the hospital. So I did not need him when I had treatment.” Patient4L

39. The current role of the GP during treatment The patient perspective – Most patients did not see the GP in coordinating role during their treatment ”You did not consider calling the GP?” ”No (…) No, I called them [at the out-patient clinic]. They had given us the phonenumber, the two specialist nurses who could help answering. The GP does not know about such matters.” Patient1P

40. Discussion Is the GP in or out during treatment? ”Overdose” of health care But returning some day to the care of the GP…

41. -Thank you for your attention!

42. Content Background – What is rehabilitation? – Cancer care and rehabilitation the patient perspective the GP perspective Cancer rehabilitation in general practice: Ungoing research – Nurse led case management: one way to support rehabilitation – The role of the GP: as seen by the patient and the GP – A new elicitation technique to fascilitate a difficult talk with the patient – Focus on rehabilitation during hospitalisation and by proactive GPs – Social inequality Summary Comments and discussion: Is general practice in or out?

43. A New elicitation technique -to facilitate a difficult talk with the cancer patient Marianne Thygesen Institute of Public Health Research Unit for General Practice University of Southern Denmark and Odense University Hospital An elicitation technique allows us to go beyond simply asking questions to elicit information

44. The psychosocial area of cancer Photo: Erland E. Mo Deposited by DFI / Billed- & Plakatarkivet Photo deposited by www.filmnet.dkwww.filmnet.dk

45. Cancer patients´ relatives need more help Problems e.g.: Erode of his or her psychological health Economics Glajchen M. The emerging Role and Needs of Family Care givers in Cancer Care The Journal of Supportive Oncology 2004;2(2):145-155 Communication with others

46. A difficult conversation

47. Grid for graphically reproduction of emotions Events Emotions Outpatient clinic Arrival at surgery ward Surgery New tool and technique

48. Graphical reproduction of anxiousness

49. Added value in research I “One is sick and fragile and vulnerable, and somehow it becomes real. It was again just doctor talk. I don’t know what it is like normally, but I thought it went fast. I can´t remember it all”

50. Added value in research I “One is sick and fragile and vulnerable, and somehow it becomes real. It was again just doctor talk. I don’t know what it is like normally, but I thought it went fast. I can´t remember it all”

51. Added value in research II “When I first got there I felt okay, but the more I sat looking at (a woman looking very ill) and she started fidgeting and becoming impatient I must say I became more and more nervous. I imagined that she was really, really sick. I was also sick, but a little sick, so there I got scared, but what the doctor said that I simply cannot remember, because I was really really upset, or became upset. I sort of saw myself with my disease, that it progressed, but logically then I knew very well, but logic has just gone in all of this. Afterwards I would like to know what they said”

52. Added value in research II “When I first got there I felt okay, but the more I sat looking at (a woman looking very ill) and she started fidgeting and becoming impatient I must say I became more and more nervous. I imagined that she was really, really sick. I was also sick, but a little sick, so there I got scared, but what the doctor said that I simply cannot remember, because I was really really upset, or became upset. I sort of saw myself with my disease, that it progressed, but logically then I knew very well, but logic has just gone in all of this. Afterwards I would like to know what they said”

53. Added value in research II “When I first got there I felt okay, but the more I sat looking at (a woman looking very ill) and she started fidgeting and becoming impatient I must say I became more and more nervous. I imagined that she was really, really sick. I was also sick, but a little sick, so there I got scared, but what the doctor said that I simply cannot remember, because I was really really upset, or became upset. I sort of saw myself with my disease, that it progressed, but logically then I knew very well, but logic has just gone in all of this. Afterwards I would like to know what they said”

54. Added value in research II “When I first got there I felt okay, but the more I sat looking at (a woman looking very ill) and she started fidgeting and becoming impatient I must say I became more and more nervous. I imagined that she was really, really sick. I was also sick, but a little sick, so there I got scared, but what the doctor said that I simply cannot remember, because I was really really upset, or became upset. I sort of saw myself with my disease, that it progressed, but logically then I knew very well, but logic has just gone in all of this. Afterwards I would like to know what they said”

55. Summary Getting cancer patient – or their near relatives to talk about touchy subjects is requested, but can be rather challenging A new elicitation technique which gives added value to use in research

56. Added value in clinical use? “Dear Madam, I forward you my graph. I hope you will be able to use it in your job. My wife and I had a good talk when filling out this grid. That was nice... Best regards” A covering letter

57. A difficult conversation

58. -Thank you for your attention!

59. Content Background – What is rehabilitation? – Cancer care and rehabilitation the patient perspective the GP perspective Cancer rehabilitation in general practice: Ungoing research – Nurse led case management: one way to support rehabilitation – The role of the GP: as seen by the patient and the GP – A new elicitation technique to fascilitate a difficult talk with the patient – Focus on rehabilitation during hospitalisation and by proactive GPs – Social inequality Summary Comments and discussion: Is general practice in or out?

60. Focus on rehabilitation during hospitalisation and by proactive GPs -a randomised controlled trial Dorte Gilså Hansen, MD, PhD Research Unit for General Practice, Odense Institute of Public Health University of Southern Denmark

61. A PhD study Integrating rehabilitation into cancer treatment: a randomised controlled trial of a new clinical practice with focus on the general practitioner’s potential role Is it possible to improve cancer patients’ physical, psychological and social rehabilitation – by targeted involvement by the GP in the treatment and rehabilitation process?

62. The randomised controlled trial Adult patients treated in Vejle Hospital for a newly diagnosed cancer 1000 included during 10 months

63. The randomised controlled trial Adult patients treated in Vejle Hospital for a newly diagnosed cancer 1000 included during 10 months Randomisation based on the GP identification code + intervention - intervention

64. Intervention by the rehabilitation coordinators A non-structured patient interview dedicated to start and facilitate a rehabilitation proces – Clarification of actual needs Communication with the GP – Disease status – Patient perceived problems and actual needs for rehabilitation – Suggestion to contact the patient offering a consultation, further supportive care and advice – Council and private offers are mentioned – A guideline (list) with subjects/topics sent by e-mail

65. Project status Inclusion period completed Evaluation continues – Patient questionnaires – GP questionnaires – Register-based data PhD dissertation – 2012

66. The patient perspective ”It is so nice that you ask how I feel, what is on my mind right now and what my daily life is like – if there is anything I or my family need”... Otherwise I mostly talk to the doctors and nurses about my treatment”.

67. The GP’s perspective ”Important to get more information about how the patient is feeling - not just a medical discharge letter” ”Nice to be encouraged and involved as the patient’s own doctor”

68. The GP’s perspective An angry patient feeling let down by her GP during diagnosis and treatment, or lack of the same, jeopardising further support and care ”I am going to pay her a visit straight away and accept her telling me off” (Jeg kører ud til hende med det samme og tager imod skideballen)

69. Preliminary results From Vejle Hospital, GPs are relatively well informed concerning diagnosis Focus on rehabilitation and non-medical care – needed – important for patient perceived continuity Clinical interviews dedicated to rehabilitation seem required Supportive patient interview by phone may be a good alternative GPs are very interested in specific patients and ready to get directly informed and involved by phone A proactive role towards patients is accepted

70. -Thank you for your attention!

71. Content Background – What is rehabilitation? – Cancer care and rehabilitation the patient perspective the GP perspective Cancer rehabilitation in general practice: Ungoing research – Nurse led case management: one way to support rehabilitation – The role of the GP: as seen by the patient and the GP – A new elicitation technique to fascilitate a difficult talk with the patient – Focus on rehabilitation during hospitalisation and by proactive GPs – Social inequality Summary Comments and discussion: Is general practice in or out?

72. Social inequality in cancer patients’ rehabilitation Lise Vilstrup Holm, PhD Fellow, MD Research Unit for General Practice, Odense Institute of Public Health University of Southern Denmark

73. Social inequality in health Growing social inequality in health Denmark and other Nordic countries equal access to health care Worse in Nordic European countries compared to many Southern European

74. Social inequality in cancer Incidence – Tobacco and lifestyle Survival – Delay in diagnosis – Comorbidity – Health behaviour

75. Measuring social inequality Education Income Occupation Social network

76. Cancer rehabilitation An area of increasing focus Reorganisation of the efforts: – Municipalities – General practice as navigator

77. Aim of PhD study To analyse the influence of socioeconomic factors on cancer patients’ rehabilitation with regard to: – Needs for rehabilitation – Participation in rehabilitation interventions – Quality of life

78. Methods 8000 newly diagnosed cancer patients Data collection: – Populationbased registries – Patient questionnaires – Ongoing until January 2010

79. Future results relevant for GP Social inequality in cancer rehabilitation Targeted rehabilitation efforts

80. -Thank you for your attention!

81. Research partners Birthe D Pedersen, Associate professor, PhD, MScN, BA, RN; Research Unit of Nursing, Faculty of Health Sciences,University of Southern Denmark, Odense, Denmark Christoffer Johansen, Professor, MD, Dr.med, The National Research Center of Cancer Rehabilitation, University of Southern Denmark… Jakob Kragstrup, Professor, Specialist in general practice, PhD, dr.med, Research Unit of General Practice, University of Southern Denmark Jens Søndergaard, Professor, Specialist in general practice, MD, PhD, Research Unit of General Practice, University of Southern Denmark Lis Wagner, Professor, Dr.PH, RN, Professor, Dr.PH, RN; Research Unit of Nursing, Faculty of Health Sciences, University of Southern Denmark Ole Mogensen, Professor, Chief Surgeon, dr.med., Professor, Chief Surgeon, dr.med.; Gynecological Obstetric department, Odense University Hospital – and - Clinical Institute, Faculty of Health Sciences, University of Southern Denmark Peter Christian Rasmussen, Chief Surgeon, MD, Surgical Department, Aarhus University Hospital Peter Vedsted, Senior Researcher, MD, PhD, Research Unit of General Practice, Aarhus University Rikke Dalsted, PhD-student, MSc, nurse; The Department and Research Unit for General Practice, University of Copenhagen Stinne Holm Begholdt, MD, PhD-studen, Research Unit of General Practice, University of Southern Denmark Søren Laurberg, Professor, Chief Surgeon, MD, DrMed Sci, Surgical Department, Aarhus University Hospital Thorkil Thorsen, MA, PhilDr, The Department and Research Unit for General Practice, University of Copenhagen

82. Sponsors Novartis Oncology Projekt Kommunal Rehabilitering The Danish Cancer Society The Danish Research Foundation for General Practice The Health Insurance Foundation The Novo Nordic Foundation The Scientific Research Council The Research Unit for General Practice in Aarhus The Research Unit for General Practice in Odense The Research Unit, The Gynecological Department, Odense University Hospital University of Southern Denmark

83. Summary Research is ungoing – more is needed – and will come Focus on rehabilitation in the daily clinic is needed Different organisational models are tested GPs are ready to play an important role Patients may not know what to expect from their GP Sketching may help to crack the conversation Social inequality is expected Should GPs focus their attention on patients with few ressources?

84. Discussion, questions and comments What do you think? Are you ready to facilitate rehabilitation among your cancer patients?

85. Thank you for your attention and contribution to the discussion Enjoy the rest of the congress and see you tonight at the congress dinner! Symposium S19