Rehabilitation of cancer patients and survivors -is general practice in or out?

1. Symposium S19 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

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: oneway to support rehabilitation • The role of the GP: as seen by the patient and the GP • A new elicitationtechnique to fascilitate a difficult talk with the patient • Focuson rehabilitation duringhospitalisation and by proactiveGPs • 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: oneway to support rehabilitation • The role of the GP: as seen by the patient and the GP • A new elicitationtechnique to fascilitate a difficult talk with the patient • Focuson rehabilitation duringhospitalisation and by proactiveGPs • 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: oneway to support rehabilitation • The role of the GP: as seen by the patient and the GP • A new elicitationtechnique to fascilitate a difficult talk with the patient • Focuson rehabilitation duringhospitalisation and by proactiveGPs • 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: oneway to support rehabilitation • The role of the GP: as seen by the patient and the GP • A new elicitationtechnique to fascilitate a difficult talk with the patient • Focuson rehabilitation duringhospitalisation and by proactiveGPs • 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: oneway to support rehabilitation • The role of the GP: as seen by the patient and the GP • A new elicitationtechnique to fascilitate a difficult talk with the patient • Focuson rehabilitation duringhospitalisation and by proactiveGPs • 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: oneway to support rehabilitation • The role of the GP: as seen by the patient and the GP • A new elicitationtechnique to fascilitate a difficult talk with the patient • Focuson rehabilitation duringhospitalisation and by proactiveGPs • 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: oneway to support rehabilitation • The role of the GP: as seen by the patient and the GP • A new elicitationtechnique to fascilitate a difficult talk with the patient • Focuson rehabilitation duringhospitalisation and by proactiveGPs • 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: oneway to support rehabilitation • The role of the GP: as seen by the patient and the GP • A new elicitationtechnique to fascilitate a difficult talk with the patient • Focuson rehabilitation duringhospitalisation and by proactiveGPs • Social inequality • Summary • Comments and discussion: Is general practice in or out?

11. Background Unmetneeds for rehabilitation Lack of continuity of care Patients – left in limbo Room for improvement! The general practitioner is often not involvedduringdiagnosis and treatment Knowledgeabout patient and relatives Patients aredoubtfulabout the general practitioner’scompetences and possibility to support Evidence is llimited

12. Rehabilitation – the WHO perspective • A processaimed at enabling persons withdisabilities to reach and maintaintheir optimal physical, sensory, intellectual, psychiatricand/or social functionallevels, thusprovidingthemwith the tools to changetheir lives towards a higherlevel of independence. • Rehabilitation mayincludemeasures to provideand/orrestorefuntions, orcompensate for the lossor absence of a functionor for a functionallimitation. The rehabilitation processdoes not involveinitalmedicalcare. It includes a wide range of mesures and activities from more basic and general rehabilitation to goal-orientedactivities, for instancevocational rehabilitation.

13. Rehabilitation – the WHO perspective • A processaimed at enabling persons withdisabilities to reach and maintaintheir optimal physical, sensory, intellectual, psychiatricand/or social functionallevels, thusprovidingthemwith the tools to changetheir lives towards a higherlevel of independence. • Rehabilitation mayincludemeasures to provideand/orrestorefuntions, orcompensate for the lossor absence of a functionor for a functionallimitation. The rehabilitation processdoes not involveinitalmedicalcare. It includes a wide range of mesures and activities from more basic and general rehabilitation to goal-orientedactivities, for instancevocational rehabilitation.

14. What is then rehabilitation? • A goal-orientedcollaborationbetween a citizen, peers and professionals • A proces aimed at enabling persons • to reach and maintaintheir optimal physical, sensory, intellectual, psychiatricand/or social functionallevel • to providethemwithtools to changetheir lives towards a higherlevel of independence

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

16. Rehabilitation of cancer patients • May • start at diagnosis • continueduringtreatment, palliation and survivorship • include the general practitioner • includeretraining • Shouldbeincluded in the optimal cancer carepathway

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: oneway to support rehabilitation • The role of the GP: as seen by the patient and the GP • A new elicitationtechnique to fascilitate a difficult talk with the patient • Focuson rehabilitation duringhospitalisation and by proactiveGPs • Social inequality • Summary • Comments and discussion: Is general practice in or out?

19. Case management and rehabilitation Christian Wulff PhDfellow, 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. The Case manager “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.” ? http://www.ccmcertification.org/ The work of the GP

23. Case management • Most oftenconducted by nurses • The setting of the intervention vary • In-patient CM • Community CM (=homenursing?) • In-patient-to-community CM • Complex intervention → risk of blackbox • Optimal CM activities and ’dosage’ unknown • ”CM is still believed to be a goodmethod for safeguardingcontinuity for the most complex patients”

24. Efficacy of CM in cancer care pathways? Outcomes studied in seven RCT trials: • Traditional medical outcomes • Related to the process of treatment and care • Costs 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 • Randomizedcontrolledtrial • Two arms • 280 patients • Patients • All colorectal cancer patients at a surgical department at Aarhus University Hospital

26. Whatdoes the nurse case manager do? • 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

27. Mode of contact • With patients and relatives • Regular patient needs assessment meetings • Proactive telephone contacts • Reactive contact person function • With healthcare 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 • Primaryoutcomes • Patient evaluations of care pathways (ad hoc, pilot tested patient satisfaction questionnaire • Patient assessed “Quality of Life” (EORTC QLQ-C30 questionnaire) • Secondaryoutcomes • 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: oneway to support rehabilitation • The role of the GP: as seen by the patient and the GP • A new elicitationtechnique to fascilitate a difficult talk with the patient • Focuson rehabilitation duringhospitalisation and by proactiveGPs • 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 PracticeUniversity of Copenhagen

34. Background • The GP perspective • ”When the patients get cancer, they stop seeingme” • Information from the hospitals • The role of the GP in the care of cancer patientsduring the time whentheyaretreated in hospital

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

36. The currentrole of the GP duringtreatment The GP perspective • Oftenthey did not have anyrole • Support and discussions ”Whatwe have to offer is more about the existentialquestions, theirworries, theiranxiousness, their families, the relationshipwiththeirchildren, and..” GP4S

37. The currentrole of the GP duringtreatment The GP perspective • Dependson the prior relation and the quality of the contact • Continuouscontactwith patients who had few ressources ”Maybeit’sexactlyour job: to takecare of the oneswhoare not educated and the poorest of our patients.” GP4S

38. The currentrole of the GP duringtreatment The patient perspective -Most patients did not needtheir GP duringtreatment ”No, I did not needhim. Because I had it from the hospital. So I did not needhimwhen I had treatment.” Patient4L

39. The currentrole of the GP duringtreatment The patient perspective • Most patients did not see the GP in coordinatingroleduringtheirtreatment ”You did not considercalling the GP?” ”No (…) No, I calledthem [at the out-patientclinic]. They had given us the phonenumber, the two specialist nurses whocouldhelpanswering. The GP does not knowaboutsuchmatters.” 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: oneway to support rehabilitation • The role of the GP: as seen by the patient and the GP • A new elicitationtechnique to fascilitate a difficult talk with the patient • Focuson rehabilitation duringhospitalisation and by proactiveGPs • 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 An elicitation technique allows us to go beyond simply asking questions to elicit information Marianne Thygesen Institute of Public Health Research Unit for General PracticeUniversity of Southern Denmark and Odense University Hospital

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

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

46. A difficult conversation

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

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”