Finland

Eero Pukkala

'A landscape of bewitching beauty and ever-changing mood, sparkling days and dreamlike white nights ­ that is Finland.' This text, taken from a Motoring map from 1937, still describes Finland as one might experience it during summer holidays. The impression may be a bit different on a mid-winter day in northern Finland when the temperature may (exceptionally) be below -50 degrees centigrade and when the sun has not risen above the horizon for many weeks. Only Icelanders live on average as far in the north as the Finns do. Finland has been a sovereign parliamentary republic since 1917. From 1809 to 1917 it was an autonomous Grand Duchy within the Russian Empire, and before that it was part of the Kingdom of Sweden for several centuries. Today Russia and Sweden are the neighbouring countries in the east and west. In north there is a common border with Norwegian Lapland, and in the south the closest neighbours are the Estonians, who also belong to the rare Fenno-Hungarian language family. Finland became a member of the European Union in January 1995, and it is in the process of switching to the single European currency, the euro. Until then the currency is the Finnmark (FIM), the value of which is about one sixth of the euro or US dollar. The living standard in Finland is high: according to Statistics Finland, in the 3rd quarter of 1999 the average monthly earnings for men exceeded 2,200 USD, and for women 1,800 USD. Seventy percent of women were employed outside the home. The average working week is 38.2 hours. The unemployment rate was 10% according to the OECD standard. The land area of Finland is 338,000 km2, of which 10% is water. There are 188,000 lakes. Six percent of the land is under cultivation, with barley and oats the main crops. Forests (mainly pine, spruce and birch) cover 68% of the country. The population of Finland is 5.2 million, giving an average density of only 17 per km2. The annual growth rate is 0.2%. Life expectancy is 77 years. The demographic pyramid resembles that of most other industrial countries, with the middle-aged groups predominating. The average household size is 2.2 persons. Fiftyfive percent of the population live in singlefamily houses, 43% are urbandwellers, with 0.9 million in Helsinki and the adjacent cities of Espoo and Vantaa. Other major cities include Tampere, Turku, Oulu and Lahti. Ninetythree percent speak Finnish, 6% Swedish. Eightyfive percent are Lutheran, 1% Orthodox. Fiftyseven percent of the population have completed postprimary education, and 13% have university degrees or their equivalent.

Cancer registration

Cancer registration in Finland started in 1952. In the 1950s, the reporting of cancers and certain benign tumours was voluntary. In 1961 the National Board of Health issued a by-law making reporting compulsory. All physicians, all hospitals and other institutions, and all pathological, cytological and haematological laboratories in the country must send a notification to the Registry of all cancer cases that come to their attention. In addition, Statistics Finland annually sends a computerised file on death certificates in which a malignant disease is mentioned. Both public and private institutions are very cooperative. The Finnish Cancer Registry and its staff are highly recognised both among the scientific community and the health care sector in Finland. The output of the Registry is widely used in research, administration, and health education on all levels. All this improves the quality of the registration activity and is likely to contribute towards complete coverage and high data accuracy in the Registry. Primary medical care in Finland is provided to the entire population for nominal fees only. After initial visits to a general or specialist practitioner, cancer patients are usually referred to hospital for confirmation of the diagnosis and treatment. Patients are referred from one hospital to another according to the needs for diagnostic examination and/or treatment. Every patient with a diagnosis of cancer can be considered to be in a position to receive adequate modern cancer treatment if such treatment is indicated. There are oncology units (with radiotherapy facilities) in the five big university hospitals and four other (regional) hospitals. Cancer surgery is practised in many general hospitals. Everyone residing in Finland since 1967 has been assigned a unique 11-digit personal identifier (PID), which is widely used in a number of different everyday events (including health care), and in all important person registers. The PID of the patient is indicated on all cancer registry notifications, and it is stored in the Registry database. It is the key in all practical registration procedures: e.g., in coding, searching from the file, and combining notifications for one patient received at different times and from different sources. For example, duplicate registration can thus be effectively avoided. PIDs have greatly facilitated record linkage operations in Finland, and large and complicated computer runs can be executed very rapidly and in a reliable way. An increasing number of notifications, especially from the pathological laboratories, but also from hospitals, are currently sent on diskettes or tapes. The automatic reporting contains the same amount of information as the manual reporting forms, including in the free texts detailed descriptions of the tumour site and histology. The following diseases are reported to the Registry:

- all malignant neoplasms, such as carcinomas (also basaliomas), sarcomas, malignant lymphomas, leukaemias, multiple myeloma, gliomas, melanoma, etc.);

- carcinoid tumours, pheochromocytomas, thymomas, ameloblastomas, and chordomas;

- carcinoma in situ lesions (except those of the skin);

- CIN III and CIL III of the cervix uteri; histologically benign tumours of the central nervous system and meninges, transitional cell papillomas of the urinary tract, and ovarian tumours with borderline malignancy.

The Registry file is annually matched, through computerized record linkage (based on PIDs), with the Causes of Death Register located at Statistics Finland, so that the dates and causes of death (also non-cancerous causes, and both underlying and contributory causes of death) can be added to the records in the Registry. The Registry file is also regularly linked with Central Population Register where the correctness of the PIDs is checked, and the complete name, vital status, possible date of death or emigration as well as the official place of residence prior to the date of diagnosis are obtained. The cancer notifications submitted to the Finnish Cancer Registry are immediately stored to the database at the Registry. Thorough visual and automatic checking procedures are carried out, both at data entry and coding. The computer directly announces illegal codes and code combinations, as well as illogical order of dates (of diagnosis, start of treatment, and death). Specific checks are carried out when needed, e.g., completeness of the Registry has been evaluated in comparisons with the national Hospital Discharge Registry [1]. If only laboratory and/or death certificate information is available, or if the data on the primary site of the tumour or date of diagnosis are incomplete or controversial, requests for further information are sent to the hospitals and physicians. This procedure is successful in a high proportion of the requests. Final coding of cancer data is done by qualified secretaries and supervised by the Registry physician (pathologist). The Registry has followed a slightly modified version of the ICD-7 nomenclature from 1955 for coding the primary site of cancer. However, it has been decided (in accordance with other Nordic cancer registries) to go over to the ICD-10 based ICD-O2. For histology, the 2-digit codes of the American Cancer Society from 1951 are being applied so far, slightly extended to meet the demands of the later decades. In the future the ICD-O2 will also be followed for histology. In practice it has been shown that it is not very important which coding system is used: virtually any specific disease category can be formed on the basis of the existing data. Each cancer considered to be an independent new primary lesion is registered separately. All independent cancer processes are coded as separate entities. The Registry files contain over 750,000 cancer cases diagnosed in 1953-2000. In addition, there are a number of cases diagnosed prior to 1953 in persons who died from cancer or got a new primary cancer since 1 January 1953. More than 21,000 new cases of cancer are currently registered each year, plus some 4,500 basal cell carcinomas of the skin and smaller amounts of some other leasons, which in the published statistics are usually excluded from the total numbers of cancers [2]. The following coded items usually meet the needs of producing statistics and doing analytical research:

- name and PID,

- municipality of residence,

- primary site and date of diagnosis,

- basis of diagnosis,

- stage: localised, regional metastases, distant metastases,

- malignancy: malignant, microinvasive (cervix uteri), in situ, borderline (ovary), benign (intracranial, urinary tract), or to be excluded from basic statistics (basalioma, polycythaemia vera, myelofibrosis, etc.),

- histology/cell type,

- treatment: surgery, radiotherapy, cytotoxic drugs, hormones, other; specific codes for curative/palliative surgery or radiotherapy; specific codes for primary treatment and later treatment,

- follow-up: date of death or emigration, cause of death.

Part of the data received by the Registry on individual cancer patients remain in the computerised database in noncoded form (such as names of the notifying hospitals or laboratories, and the clinician/pathologist, specimen numbers, tumour grade, TNM classification, details of the treatment, or cause for not being treated, and site of metastases). These data can, if needed, be used for different purposes, e.g., for searching the histological slides for re-evaluation. The Finnish Cancer Registry compares the official causes of death of each cancer patient (transferred from Statistics Finland through an automatic record linkage procedure) to all data available for that cancer, and evaluates whether the patient died from that cancer or something else. The cancer mortality rates refined by the Cancer Registry allow the use of more detailed classifications of the cancer itself than the official ones produced by Statistics Finland. The mortality maps in the Cancer Atlas of Northern Europe are based on the refined rates that have been very close to the official ones since the 1980s. The Finnish Cancer Registry has emphasised the importance of data protection and personal privacy years before it became an issue of debate in Western societies. No violations of the individuals' privacy have occurred during the first 49 years of cancer registration in Finland. Data on the level of individuals can be delivered to researchers working outside the Registry only through permission given by the National Research and Development Centre for Welfare and Health (within the Ministry of Healthand Welfare). Every year about 80 scientific papers are published based on the data and know-how of the Finnish Cancer Registry [2]. The newest cancer statistics (incidence, mortality and prevalence) can always be found at the home pages of the Finnish Cancer Registry (www.cancerregistry.fi). They indicate a strong decrease of cancer mortality among men (from 200/105 in the 1960s to 130/105 in the late 1990s), thanks the decrease in smoking. A weaker reduction in cancer mortality is see among women.

References

1. Teppo L, Pukkala E, Lehtonen M. Data quality and quality control of a population-based cancer registry - experience in Finland. Acta Oncol 1994;33:365-9.

2. Finnish Cancer Registry - Institute for Statistical and Epidemiological Cancer Research. Cancer incidence in Finland 1996 and 1997. Cancer Statistics of the National Research and Development Centre for Welfare and Health. Cancer Society of Finland Publication 61, Helsinki 2000.

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