Abstract
Overall survival of chronic myeloproliferative disorders (CMPD) such as Policytemia Vera (PV), Essential Thrombocitemia (ET), Myelofibrosis (MF), Chronic Myeloid Leukemia (CML) and Myelodysplastic Syndrome (MDS) is often long term because of their natural history and therapeutic improvement (ie: TKI, RH-EPO, JAK2 inhibitors). On the other hand, quality of life may be often compromised by persistent symptomatologic burden and chronic therapy (TX) that may worsen work ability. Although the highest incidence falls between 60 and 70 years old, prevalence studies show that nearly 50% of such patients (PTS) are less than 70 YO, hence in their working age. To the best of our knowledge no data have been collected to explore the rate of loss of employment among this group of PTS.
Aim of this study is to collect data to estimate among CMPD PTS: rate of long term loss of employment, impact of diagnostic work-up, correlation between loss of employment and diagnosis.
METHODS
From febbruary 01 until april 30, 2022 all outpatients complying with the following criteria were recruited: CML, PV, TE, MDS, MF diagnosis; life expectancy of more than 5 years based on currently used prognostic scores (CML: ELTS, MF: IPSS, MDS: R-IPSS, PV: IWG-PV score, TE: IPSET); age > 18 years old, ≤ 70 years old. Loss of employment was defined as any modality of abandonement of work after disease diagnosis (retirement, dismissal, abandonment). Demographic and basic disease data were collected. A 29 items questionnaire (QST) mainly based on the "Work Ability Index" was prepared for the purpose of this study. After informed consent acquisition, the QST was administered with psyco-oncology support to PTS planned for routine control. PTS missing control for any reason, were contacted by phone and QST was subsequently administered after informed consent reading.
RESULTS
104 PTS have been recruited (M/F: 47/57); mean age at diagnosis was 52,1 for M (range 24-69) and 50,2 for F (range 18-69). PTS diagnosis were: 30 CML, 26 MF, 24 ET, 9 PV, 7 Low-Risk MDS, 4 other CMPD, 4 NA. 68/104 PTS were on active specific TX for their disease (66 on oral TX, 2 on parenteral TX). At diagnosis 58/104 PTS (55,8%) were employed 32 M (55,2%) and 26 F (44,8%). 29 had a permanent employment, 12 had a fixed term employment, 8 flexible employment. Only 8/58 (13.8%) suspended their job during work up (sick leave). 28 of 105 pts (26.7%) (retired, employed, unemployed and housewives) reduced their daily activity and 14 of them haven't recovered yet 1 to 13 YY after diagnosis.
15 of 58 PTS (25,9%) left their employment definitively: 7 could retire because of age; 8 (13,8%), 4M and 4F, left their employment earlier after diagnosis of CMPD (4 LMC, 3 MF, 1 ET). Their jobs were distributed as follows: blue collars (3 F/2 M), driver (1M), white collars (1M/1F). Main reasons for loss of employment were: desease symptoms (10/15), TX side effects (6/15), job characteristics (6/15), anxiety/depression (5/15). Loss of employment caused depression in 9/15 PTS, and in 6/15 PTS echonomic issues and loss of social well being. We could not find any correlation between loss of employment and diagnosis probably due to the low numeber of PTS recruited.
CONCLUSIONS In our cohort of 105 retrospectively analyzed good prognosis CMPD PTS, loss of employment rate was quite high soon after diagnosis (25,9%); 13,8% could retire because of age. Surprisingly, also CML PTS left their employment despite the well known prognostic improvement. Most of the early retired PTS were blue collars or drivers (requiring higher phisical commitment). Depression, echonomic issues and loss of social well being were the main consenquences of loss of employment. The high rate of loss of employment may be related to overestimation of disease severity and limited social assistance support. A careful early multidisciplinary approach (hematologist/occupational doctor/psyco-oncologist) could probably help to avoid unnecessary unemployment, improve psycho-social well-being and reduce echonomical anxiety. Further studies are warranted to increase population sample and address methodology biases that limit our study. A specific questionnaire should be validated.
Disclosures
No relevant conflicts of interest to declare.
Author notes
Asterisk with author names denotes non-ASH members.