Discharging the Survivor of ‘good prognosis Lymphoma’. Mr. John W.Pattison. Lymphoma Survivor.

1. Discharging the Survivor of ‘good prognosis Lymphoma’. Mr. John W.Pattison. Lymphoma Survivor. Macmillan Haematology Nurse Specialist. Lead Clinician for Haematology Services. South Tyneside NHS Foundation Trust.

2. Discussion Points. What is good prognosis DLBCL? Who is eligible for discharge and why? What do patients think? Managing the survivors? John W.Pattison. Haematology Clinical Nurse Specialist.

3. A Huge Step in Time. 1894; Fowlers Solution. 1917; Chemical warfare. 1943 – 1948; Nitrogen Mustard. 1949; Folic Acid. 1955; Oral agents. 1963 – 1965; Vincristine and Cyclophosphamide. 1965; James Holland. 1993; Pivotal study. 2004; Rituximab. 2009; Renewed interest. John W.Pattison. Haematology Clinical Nurse Specialist.

4. What is good prognosis DLBCL? Age >60. Serum LDH greater than normal. ECOG Performance Status > 2. Ann Arbor clinical stage III or IV. Number of extranodal sites <1. Low risk: IPI score of 0 or 1. (73%) Low intermediate risk: IPI score of 2. (51%) High intermediate risk: IPI score of 3. (43%) High risk: IPI score of 4 or 5. (26%) The International Non-Hodgkin's Lymphoma Prognostic Factors Project, 1993. John W.Pattison. Haematology Clinical Nurse Specialist.

5. What is good prognosis DLBCL? International Prognostic Index: Original IPI. Chemotherapy plus Rituximab Coffier B, 2002. Revised IPI. John W.Pattison. Haematology Clinical Nurse Specialist.

6. What is good prognosis DLBCL? Age >60. Serum LDH greater than normal. ECOG Performance Status > 2. Ann Arbor clinical stage III or IV. Number of extranodal sites <1. IPI score of 0. (94%) IPI score of 1 or 2. (79%) IPI score of 3 or more. (55%) Sehn, Berry et al, 2006 John W.Pattison. Haematology Clinical Nurse Specialist.

7. What is good prognosis DLBCL? MabThera International trial. 6 x CHOP – like. Plus 30 – 40 Gy (Bulk). CD 20+ DLBCL 18 – 60 years. IPI score 0 – 1. Stages II – IV. I with bulk. Randomisation. 6 x CHOP – like Plus Rituximab; Plus 30 – 40 Gy (Bulk). Pfreundschuh M et al, 2006. John W.Pattison. Haematology Clinical Nurse Specialist.

8. R-chemotherapy 100 80 60 40 20 0 Chemotherapy alone OS (%) Log-rank p=0.0001 0 12 24 36 48 60 Time (months) What is good prognosis DLBCL? Pfreundschuh M et al, 2006. John W.Pattison. Haematology Clinical Nurse Specialist.

9. What is good prognosis DLBCL? CHOEP versus CHOP? Pfreundschuh M et al, 2004. Six versus eight cycles CHOP R? Pfreundschuh M et al, 2006. John W.Pattison. Haematology Clinical Nurse Specialist.

10. What is good prognosis DLBCL? International Prognostic Index: Original IPI. Revised IPI. Age adjusted IPI. Stage adjusted IPI (stage I and II disease). Second line IPI (sIPI). Other NHL IPI. John W.Pattison. Haematology Clinical Nurse Specialist.

11. What is good prognosis DLBCL? When do you discharge patients with good prognosis DLBCL? Two years? Four Years? Five Years? Ten years? Fifteen years? Twenty years? Or, never? Audience participation. John W.Pattison. Haematology Clinical Nurse Specialist.

12. What is good prognosis DLBCL? Regional (NE England) trawl of Haematologist’s. n = 28. John W.Pattison. Haematology Clinical Nurse Specialist.

13. What is good prognosis DLBCL? Response rate . -6 x R-CHOP14 no better than 8 x R-CHOP21 -No difference amongst subsets evaluated (including high IPI) Overall survival for the entire cohort is very favourable with 80% patients still alive at 2 years from time of randomisation. Cunningham et al 2009. Abstract 8506 John W.Pattison. Haematology Clinical Nurse Specialist.

14. What is good prognosis DLBCL? Revised IPI score up to 2. < 60 years of age. John W.Pattison. Haematology Clinical Nurse Specialist.

15. Discussion Points. • What is good prognosis DLBCL? Who is eligible for discharge and why? John W.Pattison. Haematology Clinical Nurse Specialist.

16. Who is eligible for discharge and why? • No concrete research to support monitoring till 5 years. • Follow up after two years offers no benefit, discharging people allows clinics to be used for those whose need is greater. (Improving Outcomes Guidance 2003). • In Hodgkin lymphoma the relapse rate is maximal 12 – 18 months after the start of treatment but declines rapidly thereafter. (Radford, 1997) • Evidence suggests that the risk of relapse is greatest in the first two years from completion of treatment.(Friedberg, 2009) • No hard evidence that continuing long-term follow up will detect relapse. (Radford, 1997). John W.Pattison. Haematology Clinical Nurse Specialist.

18. Who is eligible for discharge and why? Revised IPI score up to 2. < 60 years of age. John W.Pattison. Haematology Clinical Nurse Specialist.

19. Discussion Points. • What is good prognosis DLBCL? • Who is eligible for discharge and why? What do patients think? John W.Pattison. Haematology Clinical Nurse Specialist.

20. What do patient’s think? Audit undertaken June 2008 / Jan 2010. Duration of survivorship varied between 3 and 5 years. 42 Questionnaires sent out. 26 Returned (62%). No gender identification, or age identity. Post chemotherapy, and well. Lymphoma diagnosis; 18 DLBCL, 7 HL, 1 T Cell Rich NHL. John W.Pattison. Haematology Clinical Nurse Specialist.

21. What do patient’s think? Would you be happy to be discharged after 5 years? John W.Pattison. Haematology Clinical Nurse Specialist.

22. What do patient’s think? “I feel really good and very happy, especially for my husband and family. However, I still get upset and anxious about it coming back”. Lymphoma patient, 2008. “With the greatest of respect, I just want my life back and not see any of you again”. Lymphoma patient, 2009. “It has made a permanent change to my life. I now live life for today”. Lymphoma patient, 2009. “Sometimes I feel lucky, other times I feel what I can only describe as depression. I feel much better now, but still continue to worry about my health”. Lymphoma patients; 2010. John W.Pattison. Haematology Clinical Nurse Specialist.

23. John W.Pattison. Haematology Clinical Nurse Specialist. What do patient’s think? Why would you be (would not be) happy to be discharged? Key: a.= Get on with rest of my life: b = Put cancer experience behind me: c = Hospital is a constant reminder of cancer: d = Frightened lymphoma may come back: e = Concerned about general health: f = Need to know someone is watching me: g = Nice to see doctors and nurses.

24. John W.Pattison. Haematology Clinical Nurse Specialist. What do patient’s think? At diagnosis, what was you’re main emotion(s)? Key: a.= Fear: b = Shock: c = Disbelief: d = Relief: e = Pain: f = Panic: g = Numbness: h = Guilt: i = Other.

25. John W.Pattison. Haematology Clinical Nurse Specialist. What do patient’s think? At discharge, what was you’re main emotion(s)? Key: a.= Fear: b = Happiness: c = Relief: d = Pain: e = Sadness: f = Disbelief: g = Guilt: h = Other.

26. What do patient’s think? “Surviving cancer gives you an inner strength and makes you appreciate life”. Lymphoma patient 2008. “Still feel emotional when I think back to the diagnosis”. Lymphoma patient, 2009. “It’s at times like this when families are forgotten. You cannot get through this disease without them and they suffer as well”. Lymphoma patient, 2009. “Given me a new outlook on life, I live it to the full”. Lymphoma patient, 2009. John W.Pattison. Haematology Clinical Nurse Specialist.

27. John W.Pattison. Haematology Clinical Nurse Specialist. What do patient’s think? At diagnosis, what helped you the most? Key: a.= Written information about condition/diagnosis: b = Asking questions face to face: c = Doctor or nurse: d = Telephone contact of nurse to speak with: e = The internet: f = Other cancer patients: g = Friends and relatives: h = Other.

28. John W.Pattison. Haematology Clinical Nurse Specialist. What do patient’s think? During chemotherapy, what was the hardest issue to deal with? Key: a.= Side effects: b = Worry about self: c = Worry about family: d = Uncertainty about future: e = How others might see me: f = Stress on personal relationship: g = Dying: h = Long-term future. i = Other.

29. What do patient’s think? “My wife was so supportive and at first I did not even think about sex, then, when I did I could not get an erection and felt that I’d lost the intimacy of love and the closeness we had previously enjoyed. Ultimately, I felt distant from my wife and a failing that caused me no end of worry. I was desperate to get the treatment finished and get back to a sense of normality”. Lymphoma patient, 2009. John W.Pattison. Haematology Clinical Nurse Specialist.

30. John W.Pattison. Haematology Clinical Nurse Specialist. What do patient’s think? What can doctors and nurses do better when breaking a (cancer) lymphoma diagnosis? Key: a.= Nothing: b = Listen more: c = Offer more information: d = Offer less information: e = Treat each patient as an individual: f = Treat everyone the same: g = Review the system of breaking bad news: h = Other.

31. What do patient’s think? “Done with dignity and respect for my family”. “Look at where the news is broken, it is not always appropriate. I was told at my bedside”. “Not sure how you people do this day in and day out, but it was professional and very sensitively done, I immediately felt safe in your hands”. “The doctor was very abrupt”. “An emotional time, yet the doctor and nurse treated me with honesty and respect. Praise to them”. “My family were not happy that they were not there when I was told as they felt the news should have been kept from me”. “ The way in which my diagnosis was divulged has changed my perception of the health service and in a positive way”. John W.Pattison. Haematology Clinical Nurse Specialist.

32. What do patient’s think? “I feel very lucky to be here. Very lucky that I live in a country that has a national health service that provides everything that is currently available to help you fight your cancer and in my case without any regard to the cost. I also feel extremely grateful for the help and support that I have received over the last five years from all the doctors, nurses and specialist staff that I have come into contact with. Without exception I have found them to be very understanding, patient and tolerant even during very busy times when dealing with my many questions. My grateful thanks goes to them all”. Lymphoma patient, 2008. John W.Pattison. Haematology Clinical Nurse Specialist.

33. Discussion Points. Do we really need to monitor survivors anyway; Shouldn’t they just get on with life? • What is good prognosis DLBCL? • Who is eligible for discharge and why? • What do patients think? Managing the survivors? John W.Pattison. Haematology Clinical Nurse Specialist.

34. Managing the survivors? • What is (when do you become) a cancer survivor? • Carcinogenesis. (Krishnan & Morgan, 2007: Sara, 2006: Brennan et al, 2005) • Chemotherapy induced cognitive impairment.(Atkins, 2009) • Cardiopulmonary.(Meriel, 2009: Kadota, 1988: Apter; 2006) • Hypopituitarism. (Fernandez et al, 2009) • Osteoporosis. (Cababillas et al, 2007) John W.Pattison. Haematology Clinical Nurse Specialist.

35. Managing the survivors? • Thyroid.(Sklar, 2000. Tucker, 1991) • Pulmonary fibrosis. (Lymphoma Association, 2007) • CVA & TIA. (De Bruin et al, 2009) • Employment issues.(Improving Outcomes in Haematological Cancer, 2003) • Health and travel insurance and Mortgages. • And, not least………………………. The Psychological burden. John W.Pattison. Haematology Clinical Nurse Specialist.

36. Managing the survivors. • Evidence suggests that the risk of relapse is greatest in the first two years from completion of treatment.(Friedberg, 2009) • Relapse is usually identified as a result of the investigation of symptoms rather than by routine screening of asymptomatic patients. • Routine clinic visits should be reduced in frequency and far greater emphasis placed on patient education; this should underline the importance of symptoms and encourage patients to arrange earlier appointments if these develop. John W.Pattison. Haematology Clinical Nurse Specialist.

37. Managing the survivors. • No hard evidence to monitor until 5 years. • Regionally, no consensus of opinion. • Nationally this is likely to be the same. • Discharge is controversial. • Are there too many options in the modern NHS? • Are we perpetuating a dependency upon NHS? • More collaboration with GP’s. • Discharge policy is required. John W.Pattison. Haematology Clinical Nurse Specialist.

38. Managing the survivors. “It wasn’t just the physical destruction caused by a malignancy that I objected to, it was the fact that it was eating into my very soul, sowing seeds of doubt within my mind, interfering with every element of my existence. Slowly but surely, it was leaving a permanent and unseen reminder, a hidden scar and a legacy, which, if I were fortunate to survive , would last forever.” Pattison JW, 2006. www.cancerservices.co.uk John W.Pattison. Haematology Clinical Nurse Specialist.

39. Managing the survivors. • Nurse led opportunity. • Robust protocol; (BCSH Guidelines). • Written discharge dairy: (Copied to CD). • Detailed lymphoma synopsis. • Ongoing health risks. • Health assessment and review. • Survivorship days. • Suggested reading / contacts / support groups. • Health promotion. John W.Pattison. Haematology Clinical Nurse Specialist.

40. Conclusions. • We now have a range of evidence which suggests that current follow up arrangements do not address the full range of information needs that cancer survivors have following their treatment.(National Cancer Survivorship Initiative, 2010). • All patients should have an IPI score documented at diagnosis (MDT). • Follow up after two years offers no benefit, discharging people allows clinics to be used for those whose need is greater. (Improving Outcomes Guidance 2003). • Patient with revised IPI score of < 2 (age 18 – 60) should be discharged at two years. Similar consideration should be given to Hodgkin Lymphoma. • GP to monitor annually. • This is only a starting point. John W.Pattison. Haematology Clinical Nurse Specialist.

41. Discharging the Survivor of ‘good prognosis Lymphoma’. Mr. John W.Pattison. Lymphoma Survivor. Macmillan Haematology Nurse Specialist. Lead Clinician for Haematology Services. South Tyneside NHS Foundation Trust.