Indirect and non-medical economic burden, quality-of-life, and disabilities of the myelofibrosis disease in Spain

Figures & data

Table 1. Inclusion/exclusion criteria.

Inclusion criteria	Exclusion criteria
Minimal follow-up of 1 year from the diagnosis. Presenting splenomegaly and/or symptoms associated with the disease	Being <18 years age, not giving the consensus to participate after understanding the project through the information for the patient sheet

Table 2. Socio-demographic and clinical characteristics of the patients with myelofibrosis.

Variable	Total
Number of patients	33
Average age (SD)	64.9 (12.2)
% Men	45.4%
% with primary myelofibrosis	48.5%
Average months (SD) from the appearance of symptoms to dx	13.8 (18.3)
Average months (SD) from the dx to the date of the interview	51.4 (43.7)

Dx, diagnosis; SD, standard deviation.

Table 3. Symptomatology declared in the economic burden of the myelofibrosis study.

Items at the MFSAF questionnaire*	% patients with symptom	Punctuation mean (SD) of symptoms (scale 0 (absence) to 10 (worst imaginable))
Bone/muscle pain	72%	4.2 (3.8)
Inactivity	70%	4.0 (3.6)
Itching (pruritus)	59%	3.0 (3.4)
Early satiety	50%	2.7 (3.3)
Nocturnal sweats	47%	2.6 (3.3)
Abdominal pain	44%	2.1 (3.0)
Pain under left-side ribs	38%	1.8 (2.9)

All the patients answered questions in these sections in all the centers; pts, patients questionnaire specifically designed for the disease; version 2.014).

*Myelofibrosis Symptom Assessment Form (MFSAF). Average of punctuation summed 19 points (the maximum possible sum was 10*7 = 70 points).

Table 4. Subjective quality-of-life declared in the myelofibrosis economic burden study.

Quality of life declared…	Punctuation mean (SD) (0 (worst imaginable state of health) -- 100 (best imaginable state))
…before the disease	80.3 (20.2)
…worst moment of the disease	39.1 (23.0)

Figure 1. Ability limitations declared in the economic burden of the myelofibrosis study.

Table 5. Patients with myelofibrosis with working problems or given care through caregivers by hospital.

	Hospital del Mar	La Paz	ICO	Total
Patients with working problems	1	4	1	6
Patients without working problems	14	3	10	27
Retired and/or house-keepers (non-active)	10/15	0/7	8/11	18/33
Patients with informal caregivers	2	2	4	8
Patients that did not receive informal care	13	5	7	25

One patient both received care and had working problems. One patient had termination of employment (family business), however, was not counted due to his age (65) at diagnostic.

ICO, Institut Català d’Oncologia.

Table 6. Indirect and non-medical costs (€) of the patients with myelofibrosis.

	Total
Labor cost per patient	10,962€
Informal care cost per patient	43,373€
Labor cost per patient per year from the diagnostic	2,641€
Informal care cost per patient per year from the diagnostic	12,501€
Labor cost per patient extrapolated to survival global mean (5.7 years)	15,077€
Informal care cost per patient extrapolated to survival global mean (5.7 years)	71,259€
Total indirect and non-medical costs (% patients with costs)	86,315€ (15,142€ annual)

Economic evaluation made through the salaries declared and the imputation of 12.7€/hour for the informal care.

Table 7. Characterization of the patient with MF through the experts’ panel on clinical management.

	Splenomegaly symptomatic				Splenomegaly asymptomatic
	With constitutional symptoms		Without constitutional symptoms		With constitutional symptoms		Without constitutional symptoms
	With anemia	Without anemia	With anemia	Without anemia	With anemia	Without anemia	With anemia	Without anemia
Type of patient	13.5%	4.2%	10.3%	9.7%	9.8%	8.8%	12.3%	31.0%
Drugs*	Epo-Alpha and Hidroxurea	Hidroxurea	Epo Alpha Hidroxurea	Epo-Alpha. Talidomida. Hidroxurea	Epo-Alpha. Anagrelide Hidoxurea	Hidroxurea	Epo-Alpha Lenalidomida Talidomida Anagrelide Hidroxurea	Anagrelide and Hidoxurea
% Need transfusions	33%	0%	21%	0%	16%	2%	32%	0%
Number of visits per year	13	5	7	7	10	7	10	7
% requiring splenectomy	5%	2.5%	1.9%	1.8%	0.6%	0.1%	0.6%	0.0%
% leukemic transformations	6.4%	2.5%	2.4%	1.3%	3.6%	1.0%	1.3%	3.8%
Average number (SD) of hospital admissions	19 (13)	9 (–)	9 (5)	4 (3)	23 (38)	25 (7)	9 (11)	15 (19)

*Doesn’t imply that all patients were having drugs, those are the major share counts in the patients group.

SD, Standard deviation.

Anemia is defined as hemoglobin <10 g/dl According to the IWG-MRT international group for the treatment and investigation of the myelofibrosis18.

Mesa R, Schwager S, Radia D, et al. The Myelofibrosis Symptom Assessment Form (MFSAF): an evidence-based brief inventory to measure quality of life and symptomatic response to treatment in myelofibrosis. Leuk Res 2009;33:1199-203

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Tefferi A, Barosi G, Mesa RA, et al. International Working Group (IWG) consensus criteria for treatment response in myelofibrosis with myeloid metaplasia, for the IWG for Myelofibrosis Research and Treatment (IWG-MRT). Blood 2006;108:1497-503

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