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COMPARISONS OF SYMPTOM BURDEN IN MYELOPROLIFERATIVE NEOPLASM PATIENTS IN THE UK VS REST OF WORLD: ANALYSIS FROM THE INTERNATIONAL LANDMARK SURVEY
Author(s):
Claire Harrison
,
Claire Harrison
Affiliations:
Guy's and St Thomas' NHS Foundation Trust,Guy's Hospital,London,United Kingdom
Zack Pemberton-Whiteley
,
Zack Pemberton-Whiteley
Affiliations:
Head of Campaigns and Advocacy,Leukaemia CARE,Worcester,United Kingdom
Sahra Ali
,
Sahra Ali
Affiliations:
Queens Centre,Castle Hill Hopsital,Cottingham,United Kingdom
Adam Mead
,
Adam Mead
Affiliations:
Weatherall Institute of Molecular Medicine,University of Oxford,Oxford,United Kingdom
Jonathan Mathias
,
Jonathan Mathias
Affiliations:
MPN Voice,London,United Kingdom
Caroline Thomas
,
Caroline Thomas
Affiliations:
MPN Voice,London,United Kingdom
Maz Campbell-Drew
,
Maz Campbell-Drew
Affiliations:
MPN Voice,London,United Kingdom
Gavin Taylor-Stokes
,
Gavin Taylor-Stokes
Affiliations:
Adelphi Real World,Bollington,United Kingdom
John Waller
,
John Waller
Affiliations:
Adelphi Real World,Bollington,United Kingdom
Aurelie Duces
,
Aurelie Duces
Affiliations:
Haematology Franchise,Novartis Pharmaceuticals,Camberley,United Kingdom
Barbara Taylor
Barbara Taylor
Affiliations:
Haematology Franchise,Novartis Pharmaceuticals,Camberley,United Kingdom
(Abstract release date: 05/18/17) EHA Library. Harrison C. 05/18/17; 182765; PB2051
Prof. Dr. Claire Harrison
Prof. Dr. Claire Harrison
Contributions
PDF Abstract
Abstract

Abstract: PB2051

Type: Publication Only

Background
Patients with myeloproliferative neoplasms (MPNs), including myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia (ET), experience a substantial disease burden. The international MPN LANDMARK survey evaluated patient-reported impact of MPNs across 6 countries.

Aims
To analyze differences in disease and symptom burden of MPN patients between the UK and the Rest of Surveyed World (ROSW).

Methods
A cross-sectional survey was conducted in Australia, Canada, Germany, Italy, Japan, and the UK. The internet-based survey was administered separately to MPN patients and treating physicians (the two samples were not linked). Observed differences between the UK and ROSW are described in terms of symptom burden.

Results

A total of 699 pts (UK, n=286; ROSW, n=413) and 219 physicians (UK, n=31; ROSW, n=188) completed the survey. UK patients reported more symptoms than those in ROSW (9.02 vs 5.95 respectively). A higher proportion of UK patients reported experiencing symptoms compared with ROSW (e.g. fatigue and tiredness UK - 87% MF and PV, 86% ET; ROSW – 64% MF, 39% PV, 45% ET). This pattern was observed for 28 of the 31 symptoms recorded. A similar difference was seen when physicians were asked about frequency of patient-reported symptoms (e.g. fatigue and tiredness UK – 90% MF, 67% PV, 70%; ROSW – 71% MF, 55% PV, 48% ET).
Patients rated symptom severity from 1 (not severe at all) to 10 (worst possible). The UK was higher than ROSW for the three most common symptoms; fatigue and tiredness (mean: UK 6.73, ROSW 6.18), difficulty sleeping (mean: UK 6.09, ROSW 5.38) and loss of concentration (mean: UK 6.01, ROSW 5.67).This difference was not observed when physicians were asked to rate symptom severity.
An overall symptom burden was calculated as a function of all patient-reported symptoms. UK patients were disproportionately represented in the high symptom burden group (UK 35% vs ROSW 16%) and had an average overall symptom burden score of 40.1 compared with 24.1 among ROSW patients. UK patients were also more likely to have been classified with a high risk score at diagnosis (UK 22% vs ROSW 9%).
Despite the consistently greater symptom burden experienced by UK patients, little difference was observed in patient satisfaction with their physician’s communication (UK 81% satisfied vs ROSW 90%) and disease management (UK 87%, ROSW 90%). However, UK patients were more likely to disagree with the statement ‘My doctor understands how much my condition impacts my life’ (UK 39% vs 22% ROSW). UK physicians had more MPN patients under their care than ROSW (mean patients under care in last 12 months; UK - 25 MF, 46 PV, 47 ET; ROSW - 15 MF, 31 PV, 20 ET) and were also more likely to agree with the statement ‘There is not enough time during the appointment to discuss all of the symptoms a patient is experiencing´ (UK 74% vs ROSW 54%).

Conclusion
UK patients perceive a higher symptom burden than ROSW in terms of frequency and severity. While UK physicians agree with regards to frequency, they didn’t perceive a greater symptom severity in their patients compared to ROSW physicians. Patient/physician disconnect was unlikely to be the cause as satisfaction was high and similar to that in ROSW. However, UK physicians not only have more patients under their care than their ROSW counterparts, they are also more likely to feel they don’t have enough time to discuss all symptoms. This is likely to be impacting on the ability of patients and physicians to communicate fully on symptoms and to agree on the best disease management plan.

Session topic: 16. Myeloproliferative neoplasms - Clinical

Keyword(s): Polycythemia vera, Myelofibrosis, Essential Thrombocytemia

Abstract: PB2051

Type: Publication Only

Background
Patients with myeloproliferative neoplasms (MPNs), including myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia (ET), experience a substantial disease burden. The international MPN LANDMARK survey evaluated patient-reported impact of MPNs across 6 countries.

Aims
To analyze differences in disease and symptom burden of MPN patients between the UK and the Rest of Surveyed World (ROSW).

Methods
A cross-sectional survey was conducted in Australia, Canada, Germany, Italy, Japan, and the UK. The internet-based survey was administered separately to MPN patients and treating physicians (the two samples were not linked). Observed differences between the UK and ROSW are described in terms of symptom burden.

Results

A total of 699 pts (UK, n=286; ROSW, n=413) and 219 physicians (UK, n=31; ROSW, n=188) completed the survey. UK patients reported more symptoms than those in ROSW (9.02 vs 5.95 respectively). A higher proportion of UK patients reported experiencing symptoms compared with ROSW (e.g. fatigue and tiredness UK - 87% MF and PV, 86% ET; ROSW – 64% MF, 39% PV, 45% ET). This pattern was observed for 28 of the 31 symptoms recorded. A similar difference was seen when physicians were asked about frequency of patient-reported symptoms (e.g. fatigue and tiredness UK – 90% MF, 67% PV, 70%; ROSW – 71% MF, 55% PV, 48% ET).
Patients rated symptom severity from 1 (not severe at all) to 10 (worst possible). The UK was higher than ROSW for the three most common symptoms; fatigue and tiredness (mean: UK 6.73, ROSW 6.18), difficulty sleeping (mean: UK 6.09, ROSW 5.38) and loss of concentration (mean: UK 6.01, ROSW 5.67).This difference was not observed when physicians were asked to rate symptom severity.
An overall symptom burden was calculated as a function of all patient-reported symptoms. UK patients were disproportionately represented in the high symptom burden group (UK 35% vs ROSW 16%) and had an average overall symptom burden score of 40.1 compared with 24.1 among ROSW patients. UK patients were also more likely to have been classified with a high risk score at diagnosis (UK 22% vs ROSW 9%).
Despite the consistently greater symptom burden experienced by UK patients, little difference was observed in patient satisfaction with their physician’s communication (UK 81% satisfied vs ROSW 90%) and disease management (UK 87%, ROSW 90%). However, UK patients were more likely to disagree with the statement ‘My doctor understands how much my condition impacts my life’ (UK 39% vs 22% ROSW). UK physicians had more MPN patients under their care than ROSW (mean patients under care in last 12 months; UK - 25 MF, 46 PV, 47 ET; ROSW - 15 MF, 31 PV, 20 ET) and were also more likely to agree with the statement ‘There is not enough time during the appointment to discuss all of the symptoms a patient is experiencing´ (UK 74% vs ROSW 54%).

Conclusion
UK patients perceive a higher symptom burden than ROSW in terms of frequency and severity. While UK physicians agree with regards to frequency, they didn’t perceive a greater symptom severity in their patients compared to ROSW physicians. Patient/physician disconnect was unlikely to be the cause as satisfaction was high and similar to that in ROSW. However, UK physicians not only have more patients under their care than their ROSW counterparts, they are also more likely to feel they don’t have enough time to discuss all symptoms. This is likely to be impacting on the ability of patients and physicians to communicate fully on symptoms and to agree on the best disease management plan.

Session topic: 16. Myeloproliferative neoplasms - Clinical

Keyword(s): Polycythemia vera, Myelofibrosis, Essential Thrombocytemia

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