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Quality of Life CBMTG 0801 Investigators’ Meeting 07-Apr-2010

Quality of Life CBMTG 0801 Investigators’ Meeting 07-Apr-2010. QOL Sub-Committee for 0801. Dr. Cynthia Toze (Vancouver General Hospital) Dr. Stephanie Lee (Fred Hutch Centre). Background on the Questionnaires. “Generic” questionnaires used initially

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Quality of Life CBMTG 0801 Investigators’ Meeting 07-Apr-2010

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  1. Quality of Life CBMTG 0801 Investigators’ Meeting 07-Apr-2010

  2. QOL Sub-Committee for 0801 • Dr. Cynthia Toze (Vancouver General Hospital) • Dr. Stephanie Lee (Fred Hutch Centre)

  3. Background on the Questionnaires • “Generic” questionnaires used initially • Gradual development of questionnaires specific to oncology, BMT and GVHD • 1997 – McQuellon RP, et al (Bone Marrow Transplant) – FACT-BMT • 1999 – Hann, et al (Journal of Psychosomatic Research) concluded the CES-D to be valid and reliable in patients with cancer

  4. 2002 – Lee, et al (BB&MT) • A chronic GVHD patient self-administered symptom scale (30 item, 7 subscales) was developed and validated • Recommendation that this scale be used with another validated QOL instrument (FACT-BMT or Short Form-36)

  5. Wong, et al – Blood, 25 March 2010: “Long-term recovery after hematopoietc cell transplantation: predictors of quality of life concerns” • Need for longitudinal QOL studies identified • Chronic GVHD is a risk factor for poor QOL post transplant • Self reported cGVHD correlates well with medical records

  6. Lee, SJ et al (BB&MT) (2002) • “Real-time” assessment more accurate than retrospective review • Prospective collection of objective lab and medical assessment recommended • QOL should be considered an important endpoint in any study of cGVHD intervention

  7. The Questionnaires • Bradburn • FACT-BMT • Illness Intrusiveness Scale • EQ-5D • Socio-demographics • Patient cGVHD Severity Scoring Table

  8. Bradburn – widely used since 1969 • FACT-BMT (1997) – 4 domains (physical, emotional, social, functional) • Illness Intrusiveness Scale – Measures the impact of disease and/or treatment on important activities • Socio-demographics – complementary information regarding education, income and social support

  9. EQ-5D • Most commonly used in the European community • Developed by a collaborative group from Western Europe known as the EuroQol group. • Formed in 1987 • A network of international, multi-disciplinary researchers, originally from England, Finland, the Netherlands, Norway, and Sweden

  10. Patient Chronic GVHD Severity Scoring Table • Developed to reflect the multi-organ manifestations of cGVHD • 30 items • Responsive to change in severity

  11. The Center for Epidemiologic Studies Depression Scale (CES-D) • One of the most common screening tests to determine his or her depression quotient • The quick self-test measures depressive feelings and behaviours during the past week • Fax to Data Management Office as soon as completed

  12. Prior studies show interventions may be beneficial when scores are high (15 or greater) • Participants need to know that this questionnaire will be scored and that their transplant physician and/or study coordinator will contact them if they are significantly depressed • Find your own score:http://counsellingresource.com/quizzes/cesd/index.html

  13. When

  14. Questionnaire Schedule Pre-Conditioning Month 3* Month 6 Month 12 Month 24 ___I_______I_______I______I_______I___ *Patient Chronic GVHD Symptom scale only (repeat at onset of chronic GVHD)

  15. The Method Matters!

  16. IN GENERAL: • Least burdensome is face to face interview • Telephone interviews are more tiring • Written completion most challenging • Discuss method with each participant – Try to use the method they are most comfortable with (Bowling, A. Journal of Public Health, 2005)

  17. RADAR • Review the forms • Active participation • Don’t re-phrase • Avoid partner completion • Review directly after

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