UK results from the myeloproliferative neoplasms (MPN) landmark survey on the symptom, emotional and economic burden of MPN.
Myelofibrosis (MF), polycythaemia vera (PV) and essential thrombocythaemia (ET) are associated with a considerable disease burden and a reduced quality of life (QoL) (Emanuel et al, 2012; Mesa et al, 2016). Patients with myeloproliferative neoplasms (MPN) experience many symptoms, with fatigue being one of the most severe (Scherber et al, 2011; Johansson et al, 2012; Abelsson et al, 2013). Few studies have explored how symptom burden affects the work productivity and daily activities of these patients (Mesa et al, 2016). We previously conducted a survey, the 'US MPN Landmark Survey', reporting a substantial reduction in QoL and work productivity, suggesting a reduction of symptom burden may improve QoL and productivity of MPN patients (Harrison et al, 2017). As previous studies have suggested that QoL and overall symptom burden can differ between countries, we conducted the Landmark Survey in 6 countries outside the US. Here we present the first UK-specific analysis of the survey data exploring the impact of the overall symptom burden experienced by MPN patients. The methodology used was a cross-sectional survey of MPN patients and treating physicians conducted in 2016 in Australia, Canada, Germany, Italy, Japan and the UK. Physician and patient surveys were not linked and explored: physician-patient relationship, disease management/treatment attitudes, treatment and treatment goals and the economic, emotional and physical burden of the disease. Work productivity, absenteeism, presenteeism and activity impairment were measured using the Work Productivity and Activity Impairment Index (Reilly et al, 1993). Each domain was measured on a 0–100% scale with a higher percentage indicating a greater amount of impairment. Data were stratified by overall symptom severity, calculated by combining the number of symptoms and their associated severity for each patient. This was used to allocate patients into quartiles (Q1 = lowest symptoms burden; Q4 = highest symptom burden) at a global level (Table 1). Eligibility included ≥18 years of age, a diagnosis of MF, PV or ET, and not participating in a clinical trial. Patients were recruited in the UK via their managing physician following routine consultations or via a patient organization, MPN Voice (http://www.mpnvoice.org.uk/). All respondent data were anonymised with analysis presented at an aggregated level. All analyses presented are descriptive in nature with relevant descriptive statistics reported. Confidence intervals are presented for numeric outcomes (i.e. means) and for patient-reported impact ratings. No formal hypothesis testing was performed. Overall, 286 patients (45 MF, 78 PV, 163 ET) and 31 physicians completed the survey in the UK. Respondent demographics are presented in Table 1. UK physicians reported a numerically higher number of patients under their care than the rest of the world (ROW) (UK vs. ROW; 26·58 vs. 13·66 MF, 49·84 vs. 19·81 PV, 52·45 vs. 20·02 ET respectively) and mostly agreed with the statement 'There is not enough time during the appointment to discuss all of the symptoms a patient is experiencing' (74% agreed in UK vs. 54% agreed in ROW) (Table 1). Over 98% of patients had experienced symptoms in the previous 12 months. Almost half of Q3 and Q4 patients agreed with the statement 'MPN symptoms reduce my life quality' (49% "agree strongly"). However, 40% of Q1 and Q2 patients stated they "Somewhat agree" with the statement (Table 1). Q3 and Q4 patients reported a higher emotional burden in that more patients reported they experienced each emotional burden more 'frequently' than those in Q1 and Q2. This burden was particularly marked when interfering in the patients' family/social life (Q3 and Q4 57% vs. Q1 and Q2 24%) and interfering in patients' sex life (Q3 and Q4 58% vs .Q1 and Q2 22%) (Fig 1). A third of patients in Q3 and Q4 reported reducing their hours at work compared with Q1 and Q2 patients (34% vs. 16%), voluntarily terminating a job (17% vs. 7%) or going on disability allowance (12% vs. 1%) (Fig 1). A higher overall work impairment, absenteeism (missing work due to condition), presenteeism (working whilst sick) and activity impairment was reported by Q3 and Q4 patients compared to Q1 and Q2 patients (48·6% vs. 21·7%, 13% vs. 1·9%, 41·3% vs. 20·4% and 49·9% vs. 21·8%, respectively) (Fig 1). Our data demonstrates that UK MPN patients experience a high disease burden. This burden was higher than in ROW cohorts (Harrison et al, 2017). The stratification of patients into symptom severity quartiles was conducted at a global level, with UK patients disproportionately represented in the higher symptom burden group. Patients reported that 'MPN symptoms reduce my life quality' regardless of their overall symptom burden, suggesting a significant impact QoL in the lower burden groups. High emotional burden was noted with patients 'frequently' experiencing anxiety, worry and frustration, and impact on family and social life, suggesting that the burden could be felt further afield than the patient directly. Impact on patients' work productivity and activity impairment was high and demonstrated a greater societal burden of MPNs, with Q3 and Q4 patients associated with a higher burden across all facets. It is possible that financial burdens associated with work-related stress increases emotional and symptom burden associated with MPNs. Whilst further research would need to be conducted to confirm this relationship, the assumption is supported by data demonstrating that patients with high symptom burden also experience a higher emotional and work/financial burden. The development of improved treatments and management strategies aimed at improving the symptom burden patients experience will assist in alleviating this burden. UK physicians felt there was not enough time in appointments to address all symptoms, more so than ROW. To help mitigate this, patient support structures are needed, such as adopting telemedicine to collect symptom feedback prior to appointments. The high impact of symptom burden proves to be a challenge for both the clinical and patient community. Both groups require further support from the wider stakeholder community. Such strategies would also be complimentary to the patient support structures mentioned above (i.e. telephone clinics, remote symptom monitoring via mobile apps), and have previously demonstrated to be of benefit in previous trials across various disease areas, including haematological cancers (Breen et al, 2015). Ali: Novartis: consultancy, honoraria, expenses for travel and accommodations. Harrison: Novartis: consultancy, honoraria, expenses for travel and accommodations, research funding, speakers bureau; Shire: honoraria, speakers bureau; Gilead: honoraria, speakers bureau; Baxalta: consultancy, honoraria, speakers bureau; Incyte: honoraria, speakers bureau. Mead: Novartis: consultancy, honoraria, expenses for travel and accommodations, research funding, speakers bureau; Taylor -Stokes: Adelphi Real World: employment. Waller: Adelphi Real World: employment. All authors designed the research survey. John Waller analysed the data and wrote the paper.
Read more