Post on 01-Jan-2016
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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)
• “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
Background on the Questionnaires
• 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)
• 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
• 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
The Questionnaires
• Bradburn
• FACT-BMT
• Illness Intrusiveness Scale
• EQ-5D
• Socio-demographics
• Patient cGVHD Severity Scoring Table
• 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
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
Patient Chronic GVHD Severity Scoring Table
• Developed to reflect the multi-organ manifestations of cGVHD
• 30 items
• Responsive to change in severity
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
• 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
When
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)
The Method Matters!
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)
RADAR
• Review the forms
• Active participation
• Don’t re-phrase
• Avoid partner completion
• Review directly after