Therapeutic Education: Cancer Patients on chemotherapy:

1. Therapeutic Education: Cancer Patients on chemotherapy: Shamim Akhter QURESHI MBBS,MPH, Ingénieur d’étude(EHESP) 2nd June 2012 June 2010

2. Project • Contribution to a program of Therapeutic Education of Patients (TPE) treated for a cancer • Special concern at Educational Diagnosis • Main concern about patients on chemotherapy

3. Host Institution • Teaching Hospital Rouen, France • Under the supervision of Prof. Czernichow, the head of Public Health and Epidemiology.

4. Definition of TPE • A comprehensive approach to support patients and their families • To better understanding of their diseases • To acquire or maintain the skills they need to manage their life with a chronic disease in the best possible way. WHO (1998)

5. Why TPE ? • More chronic diseases now • Multiple healthcare professionals • Patients empowerment for decision making • Better prognosis for patients • Best satisfaction at work for professionals

6. Why Cancer ? • A leading cause of death worldwide • Cancer has been approved as chronic disease • TPE could both prevent cancer deaths and reducecomplications • Many information needed by patients • Making the quality of life better • Several associated therapies with possible Side Effects involved (radiotherapy, chemotherapy, surgery) • Two Cancer plans in France • Pressures from patients groups

7. Basic Steps of TPE • To make an educational diagnosis • To Establish a tailored TPE programme with learning priorities • To provide group or individual sessions (or both) • To Assess acquired skills and to revise programme if necessary (HAS)

8. What is Educational Diagnosis ? • A systematic, comprehensive, iterative collection of information by the health care provider • Concerning each patient' bio clinical, educational, psychological and social status. • A basis to set the targets tailored for each patient

9. Aim of the study: To identify the best method and time for educational diagnosis of hospitalized cancer patients on chemotherapy.

10. Methods (1) Literature review (Internet, Pub Med, Journals) • Main concepts : Cancer and therapies, Side effects, • TPE, Educational diagnosis, Timing and method, • To make questionnaires Observation and interviews • The whole Healthcare process for cancer patients (Announcement consultations, Medical staff, Multidisciplinary –RCP- and Routine Meetings) • Data used (Medical records, Notes taken during meetings, Special workbooks (“classeur”) • Consultations of coordinating nurse • Consultation with psychiatrist for the caregiver • Informal conversations with dietician, hair dresser, Geriatric, kinesthesist, psychologist • 10 days in two different departments

11. Methods (2) Observation and interviews (cont) Project meetings of Hospital staff for the TPE program elaboration Two courses for the educational training of medical staff for TPE Ethical aspects Verbal consent from the medical staff to access to the medical records, Verbal consent from patients and professionals before interviews Permission from the patient during my consultation observations

12. Results on health care process (1) • Outpatient is referred from family doctor with reports, see specialist, have more investigations, if provisional diagnosis cancer, • Patient is called for announcement of diagnosis during a special consultation • Record submitted to RCP, diagnosis and treatment is finalised according to the reaction the patient. • For chemotherapy : Patient goes to nurse to have explanations on intravenous chamber, side effects or any other question • Nurse notices his psychological and social life status, gives him the detail of all professional he is going to meet • Day hospital : medical examination, chemotherapy session, during weight check by dietician and advice if necessary, help from attending assistant

13. Results on health care process (2) • Inpatients more sick are admitted in weekly or traditional hospital • Diagnosis announcement in a room and followed by other professionals (95%) • Everyday meeting of staff for taking charge and brief description of patient to each other • Special workbooks explanation and consent • Consultation with different professionals if required or asked before next weekly meeting • Coordinating nurse works as relationship between patient and all professional

14. Results from Patients • All patients agreed on that • structured interviews is a best method • education should not be started just after diagnosis announcement • Two out of three patients did not like the Special workbooks • One out of three did not like the announcement consultation and educational language, • Two of them did not want to take part in decision making about treatment • All of them never attended any special session for education

15. Results from 11 Professionals • None of them have got the training for TPE. • 6 did not know about educational diagnosis • All agreed with personal interviews as the best option for educational diagnosis. • Only one did not like the idea of TPE. • Concerning time for ED : • 8 agreed with the next weekly meeting • 3 agreed with chemotherapy sessions • 5 considered that Special workbooks can help as a part for ED while 3 thought it can’t, • 4 considered that patients can understand about disease and therapy, • 6 have the experience of patients asking questions • 5 told that some patients participate in the decision-making

16. Limitations of the study • Short Pilot study • A single hospital, only 2 specific wards • Qualitative data without statistical significance • Both patients and professionals should have alteredtheir behaviour because of the observation (Hawthorn effect). • Access to the patients but no data on family

17. Conclusion TPE seems to be not well known by professionals, including ED Oncopsychlogy should be improved • Time for ED has to be discussed : • Weekly meetings can be a good place to finalize the educational needs of the patient • Just after the diagnosis announcement the patients should not be given education • Method for Educational Diagnosis • Personal Interviews