Coverage and accuracy of myeloproliferative and myelodysplastic neoplasms in the Finnish Cancer Registry

Figures & data

Table I. MPN, MDS or MD/MPN records reported by the HILMO in 2007–2013 matched by cross-referencing against the entire Finnish Cancer Registry database (n = 4813).

Finnish Cancer Registry database 1953–2013
Year of diagnosis before 2007				Year of diagnosis 2007–2013				Not found in the FCR All n (%)
Subtype of haematological malignancy n (%)				Subtype of haematological malignancy n (%)
MPN, MDS, MD/MPN	Acute myeloid leukaemia, AML	Leukaemia, other or NOS	Other HM	MPN, MDS, MD/MPN	Acute myeloid leukaemia, AML	Leukaemia, other or NOS	Other HM
604 (12.5%)	25 (0.6%)	43 (0.9%)	94 (2.0%)	1 406 (29.2%)	216 (4.5%)	83 (1.7%)	89 (1.8%)	2 253 (46.8%)

FCR, Finnish Cancer Registry; HILMO, Care Register for Health and Welfare; HM, haematological malignancy; MD/MPN, myelodysplastic/myeloproliferative neoplasms; MDS, myelodysplastic syndromes; MPN, myeloproliferative neoplasms; NOS, not otherwise specified.

Table II. Number and type distribution of reported myeloproliferative and myelodysplastic neoplasms in two independent healthcare registers between 2007–2013 (n = 5289).

		HILMO
		MPN		MDS		MD/MPN		Other HM/ Missing		Total
		N	%	n	%	n	%	n	%	n
FCR	MPN	636	41%	38	2%	1	0%	883	57%	1 558
	%	30%		2%		2%		82%		29%
	MDS	14	2%	634	77%	0	0%	174	21%	822
	%	1%		32%		0%		16%		16%
	MD/MPN	5	5%	71	67%	7	7%	23	22%	106
	%	0%		4%		12%		2%		2%
	Other HM/ Missing	1489	53%	1263	45%	51	2%	NA	NA	2803
	%	69%		63%		86%		NA		53%
	Total	2144	41%	2006	38%	59	1%	1080	20%	5289

The estimated kappa statistics for agreement between the FCR and the HILMO over the three categories of MPN, MDS and MD/MPN = 0.83 (95% CI 0.80–0.85). FCR, Finnish Cancer Registry; HILMO, Care Register for Health and Welfare; HM, haematological malignancy; MD/MPN, myelodysplastic/myeloproliferative neoplasms; MDS, myelodysplastic syndromes; MPN, myeloproliferative neoplasms, NA, not applicable.

Figure 1. Two-year averages of age-standardised incidence of myeloproliferative and myelodysplastic neoplasms in two independent healthcare registers in 1996–2013. FCR, Finnish Cancer Registry; HILMO, Care Register for Health and Welfare; MD/MPN, myelodysplastic/myeloproliferative neoplasms; MDS, myelodysplastic syndromes; MPN, myeloproliferative neoplasms.

Figure 2. Basis of diagnosis of myeloproliferative and myelodysplastic neoplasms in the Finnish Cancer Registry in years 2003–2007 (n = 2486).