1. Mirela Anghelina, M.D., M.P.H.
Quality of Life in HCL
Leslie A. Andritsos, M.D.
Mirela Anghelina, M.D., M.P.H.

2. Why study quality of life in HCL?
Important factor in survivorship
HCL is a chronic disease often with many ups and downs
HCL is a rare disease
QOL has not been systematically studied before in HCL
Why study quality of life in HCL?

3. Quality of life in CLL CLL is also a chronic/incurable leukemia
Also frequently thought of as a “good” leukemia
The most common leukemia in Western populations
Patients often require several different courses of treatment
Many potential related complications
QOL has been extensively studied in CLL
Important lessons to be learned!
Quality of life in CLL

4. Quality of life in CLL: what the research shows
Physical, social functioning and overall QOL scores were similar or better than unaffected persons
Emotional well being was significantly worse
Factors associated with lower QOL:
Older age
Fatigue
Female Gender
Almost 60% of CLL patients think about their CLL every day, esp. if QOL is worse
Quality of life in CLL: what the research shows
Shanafelt et al. 2007, Shanafelt et al. 2009

5. Optimistic messages about CLL lower the QOL score
CLL is the “good” leukemia
Don’t worry about your CLL
If you could pick a cancer to have, this is it
HCL patients receive these same messages
Optimistic messages about CLL lower the QOL score
Shanafelt et al. 2009

6. What we heard from HCL patients
Self-reported decline in QOL after diagnosis
Mostly related to:
Fatigue
Lack of participation in previous activities
Fear of social activities due to risk of infection
Unresolved issues around traumatic events at the time of diagnosis
Lack of support to help with these issues
What we heard from HCL patients

7. HCL Quality of Life Surveys
Currently open and enrolling patients who are also participating in the patient data registry
Survey consists of completion of surveys at the time of study entry and then every 6 months for up to 5 years
Surveys have been previously validated in other leukemias
Also developing a QOL survey unique to HCL
HCL Quality of Life Surveys

8. Surveys in detail Demographics.
Functional Assessment of Cancer Therapy – Leukemia (FACT-Leu).
Quality of Life (single item).
Self-Rated Health.
Medical Outcomes Study Social Support Questionnaire.
FACIT-Fatigue.
HCL Patient Concerns.
Personal Habits Questionnaire.
Surveys in detail

9. Preliminary Results - OSU Patients Demographics*
Age at Diagnosis
Median (range)
53.5 (29-80)
Gender, no (%)
Female
Male
6 (13)
42 (88)
Race, no (%)*
Black or African American
Native Hawaiian or Other Pacific Islander
White
1 (2)
45 (96)
Disease Status at Time of Survey, no (%)
Newly diagnosed CR PR
Relapse
9 (19)
27 (56)
5 (10)
7 (15)
*Unpublished Data
*1 unknown

10. Preliminary Results FACT- Leu Score*
*Unpublished Data
P < 0.01

11. Preliminary Results – FACT- Leu Score by Disease Status*
*Unpublished Data
P < 0.01

12. MOS Social Support Scale*
*Unpublished Data
All One-sample t-test with p value<

13. Fatigue Scale*
P < 0.01
*Unpublished Data

14. HCL Patients Concerns*
Finding a provider with expertise in HCL. 30%
Finding a treatment center with health care providers experienced in treating HCL. 40%
The impact of your illness on your family. 75%
Difficulty finding other individuals diagnosed with HCL. 50%
Finding reliable information about HCL on social media (Facebook, Twitter, etc.). 36%
HCL Patients Concerns*
Since receiving a diagnosis of hairy cell leukemia, have you ever experienced any of the following concerns?
*Unpublished Data

15. We hope to identify specific issue our patients face after getting HCL diagnosis.
Patients with HCL have a better quality of life than both the general population and cancer patients
Newly diagnosed HCL patients have a lower quality of life than both the general population and other cancer patients. This is related to lower emotional and functional well-being.
The Social Support measures show that HCL patients have better social support that other cancer patients.
Fatigue is similar to other cancer patients, but it is significantly lower than in general population.
More data to come!
Summary
Point three could be due to the stress being diagnosed with cancer augmented by the stress of a rare cancer diagnostic.
Point four. It is still room for improvement.

16. In your opinion, what should we be focusing on?
We want to hear from you