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

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?

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

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

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

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

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

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

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

Preliminary Results FACT- Leu Score* *Unpublished Data P 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

Preliminary Results – FACT- Leu Score by Disease Status* *Unpublished Data P 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

MOS Social Support Scale* *Unpublished Data All One-sample t-test with p value< 0.0005

Fatigue Scale* P < 0.01 *Unpublished Data

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

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.

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