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How Amber Essenmacher, PA-C, MMS, Medical Science Liaison at Incyte Corporation, assesses and manages symptom burden

“I like to remind my patients about which symptoms they should watch out for and when to call with questions. I also try to become familiar with a patient’s day-to-day activity level and how often they are participating in activities they enjoy, so I can determine whether there has been a decline in these activities.”

—Amber Essenmacher, PA-C, MMS, Medical Science Liaison at Incyte Corporation

White Paper—Patient Care in Polycythemia Vera: An Advanced Practice Provider’s Perspective

PV symptoms may impact patients and can exist despite treatment1-3

Image that says – In the Landmark survey, 66% of patients with PV reported that their symptoms reduced their quality of life
Image that says – In the Landmark survey, 66% of patients with PV reported that their symptoms reduced their quality of life
*

The MPN Landmark survey, funded by Incyte Corporation, was a web-based questionnaire composed of 65 multiple-choice questions intended to help evaluate the patient disease burden in the myeloproliferative neoplasm (MPN) disease setting. A total of 813 patients in the US with a previous diagnosis of myelofibrosis (MF), PV, or essential thrombocythemia (ET) completed the survey (MF, n = 207; PV, n = 380; ET, n = 226).1

†

Patients reported whether they strongly agreed, somewhat agreed, somewhat disagreed, or strongly disagreed with the following statement: PV symptoms reduce my quality of life.1,4

PV-related symptoms carry a real impact. Learn about how these patients carried the burden

Image leads to video of a real PV patient named Dave, who speaks about how PV symptom burden impacts his life
30 nights spent sweating since Dave’s last PV appointment. (But who’s counting?)

Dave, a patient with PV, is experiencing
disease-related symptoms. He sees his oncologist every 3 months. Learn how night sweats, and other symptoms of PV, impacted Dave's life.

Image leads to video of a real PV patient named Nick, who speaks about how PV symptom burden made him miss out on important moments
40 days lost to fatigue since Nick’s last PV appointment. (But who’s counting?)

Nick, a patient with PV, is experiencing
disease-related symptoms. He sees his oncologist every 3 months. Learn how fatigue, and other symptoms of PV, made him miss out on important moments.

Image leads to video of a real PV patient named Julie, who speaks about how PV symptom burden affected her life
36 days of itching since Julie's last PV appointment. (But who's counting?)

Julie, a patient with PV, is experiencing disease-related symptoms. She sees her oncologist every 3 months. Learn how pruritus, and other symptoms of PV, affected her life.

I cannot emphasize enough that PV-related symptoms are prevalent and may impact your patient’s quality of life. Based on my own experience, if you ask specific, detailed questions about PV-related symptoms—such as fatigue, night sweats, or pruritus, among others—you may find that your patients are experiencing one or more [of] these symptoms to some degree.

—Prithviraj Bose, MD 
White Paper—Optimizing the Management of Patients with Polycythemia Vera

On average, patients with known HU use had moderately high symptom burden (TSS = 29.2)2

  • A prospective study of 1334 patients with PV where a subset of patients received hydroxyurea (HU) (n = 499)2‡
Image of graph that shows MPN-10 mean symptom scores in patients with known HU use

Adapted with permission from Wolters Kluwer Health, Inc.: Geyer H, Scherber R, Kosiorek H, et al, Symptomatic Profiles of Patients With Polycythemia Vera: Implications of Inadequately Controlled Disease, Journal of Clinical Oncology, volume 34, issue 2, pages 151-159, https://ascopubs.org/doi/full/10.1200/JCO.2015.62.9337.

MPN-10, Myeloproliferative Neoplasm Symptom Assessment Form; TSS, total symptom score.

‡A prospective study of 1334 patients with PV was conducted to assess baseline symptoms with certain disease features: known HU use (n = 499), known phlebotomy (n = 646), palpable splenomegaly (n = 369), or all 3 features (n = 148), and compared to a control group of patients that lacked the specified feature. Assessment of myeloproliferative neoplasm symptoms was performed by using the MPN-10. All items were evaluated on a 0 (absent) to 10 (worst imaginable) scale. The MPN-10 TSS has a possible range of 0 to 100 with 100 representing the highest level of symptom severity. The TSS for each patient was analyzed to place the patient into the quartiles of low symptom burden (TSS, 0-7), intermediate symptom burden (TSS, 8-17), moderately high symptom burden (TSS, 18-31), or high symptom burden (TSS ≥32).2

Patients with PV had moderately high symptom burden regardless of blood count control3

  • Symptom burden in patients who achieved blood count control versus those who did not was analyzed among 1813 evaluable patients with PV in the prospective, observational REVEAL study3#
Image that says Mean TSS according to blood count control status (Hct, WBC, PLT)
Image of Robyn Scherber, MD, MPH

In PV, blood counts and symptoms can be independent factors. Regardless of what a patient’s blood counts are, or whether or not their disease is well controlled, they can still have severe symptom burden.

—Robyn Scherber, MD, MPH

Reprinted from Clinical Lymphoma Myeloma and Leukemia, volume 19, issue 9, MR Grunwald, JM Burke, DJ Kuter, et al, Symptom Burden and Blood Counts in Patients With Polycythemia Vera in the United States: An Analysis From the REVEAL Study, pages 579-584, copyright 2019, with permission from Elsevier.

CHR, complete hematologic remission; Hct, hematocrit; PLT, platelet; WBC, white blood cell.

# REVEAL was a prospective, observational study that collected contemporary data regarding burden of disease, clinical management, patient-reported outcomes, and healthcare resource utilization from adult patients with PV in the US, and was sponsored by Incyte. A total of 2510 patients were enrolled over an approximate 2-year period (July 2014 to August 2016), with 2307 patients having completed the Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF) TSS at enrollment. Of these, 1813 (72.2%) had a complete blood count within 30 days before completion of the at-enrollment MPN-SAF TSS and were evaluable. At the time of enrollment, most patients (n = 1714; 94.5%) were being managed with cytoreductive therapy; 1581 patients (87.2%) were managed with phlebotomy, hydroxyurea, or a combination thereof. Complete hematologic remission was defined as Hct <45%, WBC count <10 × 109/L, and PLT count ≤400 × 109/L; these same criteria were used to determine if Hct, WBC, and PLT were controlled.3

Image of Robyn Scherber, MD, MPH

In PV, blood counts and symptoms can be independent factors. Regardless of what a patient’s blood counts are, or whether or not their disease is well controlled, they can still have severe symptom burden.

—Robyn Scherber, MD, MPH

References: 1. Mesa R, Miller CB, Thyne M, et al. BMC Cancer. 2016;16:167. 2. Geyer H, Scherber R, Kosiorek H, et al. J Clin Oncol. 2016;34(2):151-159. 3. Grunwald MR, Burke JM, Kuter DJ, et al. Clin Lymphoma Myeloma Leuk. 2019;19(9):579-584.e1. 4. Mesa R, Miller CB, Thyne M, et al. BMC Cancer. 2016;16(Suppl):1-14. 5. Emanuel RM, Dueck AC, Geyer HL, et al. Blood. 2013;122:4067.

Image of Robyn Scherber, MD, MPH

Hear from Robyn Scherber, MD, MPH, about the importance of looking beyond blood counts and actively monitoring PV symptoms

Watch as Dr Scherber discusses investigating the causes of increased symptom burden in patients with PV, including looking at blood counts and current treatment

Adapted with permission from Wolters Kluwer Health, Inc.: Geyer H, Scherber R, Kosiorek H, et al, Symptomatic Profiles of Patients With Polycythemia Vera: Implications of Inadequately Controlled Disease, Journal of Clinical Oncology, volume 34, issue 2, pages 151-159, https://ascopubs.org/doi/full/10.1200/JCO.2015.62.9337.

MPN-10, Myeloproliferative Neoplasm Symptom Assessment Form; TSS, total symptom score.

‡A prospective study of 1334 patients with PV was conducted to assess baseline symptoms with certain disease features: known HU use (n = 499), known phlebotomy (n = 646), palpable splenomegaly (n = 369), or all 3 features (n = 148), and compared to a control group of patients that lacked the specified feature. Assessment of myeloproliferative neoplasm symptoms was performed by using the MPN-10. All items were evaluated on a 0 (absent) to 10 (worst imaginable) scale. The MPN-10 TSS has a possible range of 0 to 100 with 100 representing the highest level of symptom severity. The TSS for each patient was analyzed to place the patient into the quartiles of low symptom burden (TSS, 0-7), intermediate symptom burden (TSS, 8-17), moderately high symptom burden (TSS, 18-31), or high symptom burden (TSS ≥32).2

Patients with PV had moderately high symptom burden regardless of blood count control3

  • Symptom burden in patients who achieved blood count control versus those who did not was analyzed among 1813 evaluable patients with PV in the prospective, observational REVEAL study3#
Image that says Mean TSS according to blood count control status (Hct, WBC, PLT)
Image of Robyn Scherber, MD, MPH

In PV, blood counts and symptoms can be independent factors. Regardless of what a patient’s blood counts are, or whether or not their disease is well controlled, they can still have severe symptom burden.

—Robyn Scherber, MD, MPH

Reprinted from Clinical Lymphoma Myeloma and Leukemia, volume 19, issue 9, MR Grunwald, JM Burke, DJ Kuter, et al, Symptom Burden and Blood Counts in Patients With Polycythemia Vera in the United States: An Analysis From the REVEAL Study, pages 579-584, copyright 2019, with permission from Elsevier.

CHR, complete hematologic remission; Hct, hematocrit; PLT, platelet; WBC, white blood cell.

# REVEAL was a prospective, observational study that collected contemporary data regarding burden of disease, clinical management, patient-reported outcomes, and healthcare resource utilization from adult patients with PV in the US, and was sponsored by Incyte. A total of 2510 patients were enrolled over an approximate 2-year period (July 2014 to August 2016), with 2307 patients having completed the Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF) TSS at enrollment. Of these, 1813 (72.2%) had a complete blood count within 30 days before completion of the at-enrollment MPN-SAF TSS and were evaluable. At the time of enrollment, most patients (n = 1714; 94.5%) were being managed with cytoreductive therapy; 1581 patients (87.2%) were managed with phlebotomy, hydroxyurea, or a combination thereof. Complete hematologic remission was defined as Hct <45%, WBC count <10 × 109/L, and PLT count ≤400 × 109/L; these same criteria were used to determine if Hct, WBC, and PLT were controlled.3

Image of Robyn Scherber, MD, MPH

In PV, blood counts and symptoms can be independent factors. Regardless of what a patient’s blood counts are, or whether or not their disease is well controlled, they can still have severe symptom burden.

—Robyn Scherber, MD, MPH

References: 1. Mesa R, Miller CB, Thyne M, et al. BMC Cancer. 2016;16:167. 2. Geyer H, Scherber R, Kosiorek H, et al. J Clin Oncol. 2016;34(2):151-159. 3. Grunwald MR, Burke JM, Kuter DJ, et al. Clin Lymphoma Myeloma Leuk. 2019;19(9):579-584.e1. 4. Mesa R, Miller CB, Thyne M, et al. BMC Cancer. 2016;16(Suppl):1-14. 5. Emanuel RM, Dueck AC, Geyer HL, et al. Blood. 2013;122:4067.