1. CoRPS Nice 25-02 2011 Center of Research on Psychology in Somatic diseases Quality of life and symptom assessment in long-term blood cancer survivors (chapter 5) Floortje Mols Tilburg University & Comprehensive Cancer Center South The Netherlands

2. CoRPS Content of Chapter 5 Specifically written for blood cancer survivors. The major forms of blood cancer are: lymphoma, leukemia and multiple myeloma. Definition of survivorship: A person diagnosed with cancer is defined a survivor from the moment of diagnosis through the balance of his or her life (US National Coalition for Cancer Survivorship. http://www.canceradvocacy.org).http://www.canceradvocacy.org

3. CoRPS Overview of literature I Hodgkin lymphoma survivors: –A systematic review showed that they face problems that can affect their quality of life. –They reported problems in role physical and cognitive functioning, general health and financial problems. –Hodgkin lymphoma survivors treated with a combination of therapies, with older age and female sex reported worse quality of life. Oerlemans S et al., Submitted. 2011.

4. CoRPS Overview of literature II Non-Hodgkin lymphoma survivors: –A systematic review showed that they had problems with physical functioning, appetite loss, and financial problems. –Having had chemotherapy was negatively associated with quality of life but no differences in chemotherapy regimens were found. –In non-Hodgkin lymphoma survivors not meeting public exercise guidelines quality of life is low, but can be improved with more exercise. Oerlemans S et al., Submitted. 2011.

5. CoRPS Overview of literature III Multiple myeloma survivors: –A systematic review concluded that there are still few RCTs in MM including quality of life as a study end- point. –13 of 15 included trials stated that quality of life results should influence clinical decision making. However, these studies had only a limited impact on published treatment guidelines. Kvam AK et al., Eur J Haematol. 2009

6. CoRPS Overview of literature IV Leukemia survivors: –A review showed that acute myeloid leukemia and its treatment have a substantial negative impact on a patient’s quality of life in both short and long-term survivors. –Long-term survivors appear to recover almost completely with respect to physical, psychological and emotional well being, but incur continued sexual dysfunction. –Among chronic lymphatic leukemia survivors, the older the age of the patient, the poorer the QOL. Redaelli A et al., Cancer Treat Rev. 2004; Stephens JM et al., Am J Ther. 2005

7. CoRPS PRO instruments for blood cancer patients Generic PRO instruments Disease specific PRO instruments –Cancer specific PRO instruments –Blood cancer specific PRO instruments –Treatment specific PRO instruments

8. CoRPS Generic PRO instruments I Sickness Impact Profile (SIP) : –Assesses the impact of disease on a patient’s life. Nottingham health profile (NHP): –Intended for primary health care to provide a brief indication of a patient's perceived emotional, social and physical health problems. Short form 36 (SF-36): –To measure generic health concepts relevant across different age, disease, and treatment groups.

9. CoRPS Generic PRO instruments II With these instruments it is possible to: –describe PRO in blood cancer patients. –compare PRO of blood cancer patients to the general population in order to see the effect of diagnosis and treatment on patients lives. These instruments may NOT: –possess the necessary sensitivity to issues that are important to blood cancer patients. –give a comprehensive overview of a patients PRO.

10. CoRPS Disease specific PRO instruments When selecting a disease specific PRO instrument, a distinction should be made to PRO instruments that: –can be used in all cancer patient populations. –address issues specific to a certain cancer population (e.g. chronic lymphatic leukaemia). –address issues that concur with certain treatments (e.g. chemotherapy-induced neuropathy).

11. CoRPS Cancer specific PRO instruments Examples of well-known cancer specific instruments are: –European Organisation for Research on Treatment of Cancer Quality of life Questionnaire (EORTC-QLQ-C30) –Functional Assessment Cancer Therapy - General (FACT-G) –CAncer Rehabilitation Evaluation System short form (CARES-SF) –Rotterdam Symptom Checklist (RSCL) –Functional Assessment of Chronic Illness Therapy measurement System (FACIT) –Functional Living Index: cancer (FLIC) –Impact of Cancer questionnaire (IOC) –Quality of Life – Cancer Survivors’ questionnaire (QOL-CS)

12. CoRPS Disease specific PRO instruments I Examples of disease specific instruments for blood cancer are: –EORTC Module for Chronic Lymphocytic Leukemia (EORTC QLQ-CLL16) –EORTC Myeloma module (EORTC QLQ-MY20) –MRC/EORTC Leukaemia Module (QLQ-LEU) –Function Assessment of Chronic Illness Therapy– Lymphoma (FACT-LYM)

13. CoRPS Disease specific PRO instruments II Disease specific instruments for blood cancer NOT included in this guideline are: –Hodgkin: currently unavailable (but in development) –Non-Hodgkin: 52-page questionnaire based on previously validated items and scales and new items. Not validated. –Chronic myeloid leukemia: under development by the EORTC (phase I-II). Not validated. –Leukemia: FACT-Leu, a 27-item instrument designed for leukemia patients. Not validated.

14. CoRPS Treatment specific PRO instruments Treatment specific instruments that are available for use in blood cancer patients are: –Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT). –Functional Assessment of Cancer Therapy/Gynecologic Oncology Group-Neurotoxicity instrument (Fact/GOG- Ntx). –Chemotherapy-induced peripheral neuropathy module (EORTC QLQ-CIPN20).

15. CoRPS Conclusion Paucity of studies on PROs in survivors of blood cancer in contrast to the amount of studies available for survivors with other (solid) tumors. Need for more research!! A number of instruments on PROs are available for use –in both the general population AND in cancer survivors –in specific subsamples of patients (e.g. according to the exact diagnosis and treatment) This chapter should enable clinicians and researchers to select the most suitable instruments for use.

16. CoRPS Questions?