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