Late results after paediatric cardiac surgery

Background: Congenital heart defects include a wide range of inborn malformations. Depending on the defect, the life expectancy of a newborn with cardiac anomaly varies from a few days to a normal life span. In most instances surgery, is the only treatment available. The late results of surgery have not been comprehensively investigated. Aims: Mortality, morbidity and the life situation of all Finnish patients who had been operated on for congenital heart defect during childhood were investigated. Methods: Patient and surgical data were gathered from all hospitals that had performed heart surgeries on children. Late mortality and survival data were obtained from the population registry, and the causes of deaths from Statistics Finland. Morbidity of patients operated on during 1953-1989 was assessed by the usage of medicines. The pharmacotherapy data of patients and controls were obtained from the Social Insurance Institute. The life situation of patients was surveyed by mailed questionnaire. Survival, causes of deaths and life situation of patients were compared with those of the general population. Results: A total of 7240 cardiac operations were performed on 6461 children during the first 37 years of cardiac surgery (1953-1989). The number of procedures constantly rose during this period, and the increase continued in later years. The patient material varied over time, as more defects became surgically treatable. During 1953-1989 the operative mortality (death within 30 days of surgery) was 6.9%. In the 1990s a slight rise occurred in early mortality, as increasingly complicated patients were surgically treated. During 2000-2003 practically no defects were beyond the operative range. Thus, the operative mortality of 4.4% was excellent, decreasing even further to 2.0% in 2004-2007. The overall 45-year survival of patients operated on in 1953-1989 was 78%, and the corresponding figure for the general population was 93%. Survival depended on the defect, being worst among patients with univentricular heart. Late survival was also better during the 1990s and at the beginning of the 21st century. Of the 6028 early survivors, 592 died late (>30 days) after surgery. A total of 397 deaths (67%) were related and 185 (31%) unrelated to congenital heart defect. The cause of death was unknown in 10 cases. Of those 5774 patients who survived their first operation and had complete follow-up, 16% were operated on several times. Seventeen percent of patients used medicines for cardiac symptoms (heart failure, arrhythmia, hypertension and coronary disease). Patients risk of using cardiac medicines was 2.16 (Cl 1.97-2.37) times higher than that of controls. Patients also had more genetic syndromes and mental retardation and more often used medicines for asthma and epilepsy. Adult patients who had been operated on as children had coped surprisingly well with their defects. Their level of education was similar and their employment level even higher than expected, and they were living in a steady relationship as often as the general population. Conclusions: Cardiac surgery developed rapidly, and nowadays practically all defects can be treated. The overall survival of all operated patients was 78%, 16% less than that of the general population. However, it was significantly better than the anticipated natural survival. However, many patients had health problems; 16% needed reoperations and 17% cardiac medicines to maintain their condition. Most of the patients assessed their general health as good and lived a normal life.

Open Access -julkaiseminen, linkittäminen ja tekijänoikeus - selvitys verkkojulkaisusopimuksissa huomioitavista seikoista

Kirjastoissa ja yliopistoissa tapahtuvaa tieteellisten töiden verkkokäyttöä koskevat tekijänoikeudelliset kysymykset ovat viimeaikoina aiheuttaneet päänvaivaa. Tietoverkot ja digitaalinen ympäristö muodostavatkin tekijänoikeuden kannalta erityisen soveltamisympäristön johon perehtyminen edellyttää tarkempaa tietämystä tiedon siirtämisestä, tietokannoista sekä ylipäätään tietoverkkoihin liittyvistä teknisistä toiminnoista. Koska sovelletut tekniset ratkaisut poikkeavat eri yhteyksissä toisistaan, pyrin kirjoituksessa yleisellä tasolla selvittämään niitä käyttäjien ja oikeudenhaltijoiden välisiä tekijän- ja sopimusoikeudellisia kysymyksiä, joita teosten käyttö tietoverkoissa aiheuttaa. Pyrkimyksenä on tuoda esiin ne tekijänoikeudellisesti merkitykselliset seikat, jotka verkkojulkaisuja arkistoitaessa, välitettäessä sekä linkkejä käytettäessä tulisi alkuperäisten tekijöiden, kustantajien ja verkkojulkaisijoiden (esimerkiksi kirjasto tai yliopisto) välisissä sopimuksissa ottaa huomioon. Kysymyksiä tarkastellaan erityisesti julkaisijan näkökulmasta. Esitys sisältää myös kustantajien lupakäytäntöä käsittelevän empiirisen tutkimuksen. Tutkimuksessa on tarkasteltu kuinka usein kustantajat ovat vuosien 2000 – 2003 välisenä aikana myöntäneet luvan julkaista väitöskirjan artikkeli osana väitöskirjaa Teknillisen korkeakoulun avoimella ei kaupallisella www-palvelimella. Koska linkeillä on verkkojulkaisutoiminnassa usein merkittävä rooli, mutta niiden tekijänoikeudellinen asema on epäselvä, kirjoituksen jälkimmäisessä osiossa perehdytään linkkien tekijänoikeudelliseen asemaan.