Legen som helsearbeider. Er den profesjonelle autonomien truet?

Sammendrag Vi har i denne oppgaven sett på legers autonomi både som gruppe og på individuelt nivå. Problemstillingen har vært hvorvidt autonomien med de endringer som har funnet sted i samfunnet og i helsevesenets organisering er endret - eller kanskje til og med blitt en anakronisme. Legeyrket kjennetegnes tradisjonelt av en relativt stor grad av selvstendighet både i det enkelte lege- pasientforholdet, og når leger som profesjonsgruppe organiserer sin tjeneste i samfunnet. Samfunnsendringer, Helseforetaksreformen, Samhandlingsreformen, lovendringer og andre mer økonomidrevne omorganiseringer i mange helseforetak de siste årene, er den bakgrunn hvorpå vi har funnet det interessant å reise spørsmålet om det kan være slik at også legenes posisjon i dette bildet er forandret? Som studenter ved det erfaringsbaserte mastergradsstudiet i helseøkonomi og helseledelse (MHA UiO) og med egen bakgrunn i klinisk hverdag, syntes vi spørsmålet var aktuelt og interessant. Vi valgte å gjennomføre en kvalitativ studie med 3 fokusgruppeintervjuer og gjennomgang av aktuell litteratur for definisjon av begrepet autonomi - en egenskap ved profesjonsyrker som lege, advokat, ingeniør, lektorer og noen få andre. Spørsmålet om profesjonens autonomi i vid forstand kan være truet, er ikke nytt og har vært undersøkt og debattert med noen mellomrom siden legen var en embetsmann. Lovendringer, omorganiseringer og konkurranse om behandlerrollen, har egget til diskusjon og spørsmålet har mest av alt vært stilt av profesjonen selv. Ved forestående og pågående endringer har framtidig rolle syntes uklar, fremmedfølelsen er vekket og man har med rette følt seg truet? Mer enn tap av verdslige privilegier, synes tapet av en selvstendighet i selve yrkesutøvelsen å være i legenes tanker når debatten reises. Gjennomgående kan man hevde at legenes autonomi synes bevart. Historiske endringer som er beskrevet her, har ikke kneblet yrkesgruppen eller gjort den til et redskap – legene som individer og som gruppe har beholdt sin profesjonelle selvstendighet - tyder vår undersøkelse på. Fagkunnskapen har hittil gjort legene suverene i det enkelte pasientforhold og som gruppe besitter profesjonen unik kunnskap som gir tyngde i det offentlige rom og profesjonen styrer fortsatt langt på vei seg selv. Dette synes beskrivende for norske forhold. Deprofesjonalisering er et uttrykk som tidligere er konstruert for å beskrive mekanismen bak en forvitring av profesjonell autonomi. Det innebærer blant annet en uthuling av fagfeltets suverenitet i forhold til den medisinske kunnskap, men dette synes ikke i realiteten å ha funnet sted, så langt. Demokratiseringen av kunnskap gjennom internettet utfordrer legenes suverenitet i forhold til forvaltningen av den – dette vil kanskje ytterligere styrke deres posisjon ved den skjerpelse dette vil medføre, like mye som den truer den. Vi stilte disse forskningsspørsmålene: - På hvilken måte opplever dagens sykehusleger et profesjonelt autonomitap? - Hvordan kan legenes kollektive profesjonelle autonomi bevares under stadig omfattende reformer og omorganiseringer? Analysene av våre fokusgruppesamtaler indikerer at kolleger ikke egentlig synes å føle seg detronisert av til dels dramatiske omorganiseringer i det norske helsevesenet den senere tiden. Problemstillingen opplevdes som absolutt aktuell i gruppediskusjonene, men legene bekymrer seg mer for den kollektive autonomi ved at faglige argumenter i de omveltninger som foregår vanskeligere når fram enn tidligere. Faget synes, som på andre samfunnsarenaer (f eks utdanning og forskning) svekket i forhold til tidligere. I det unike lege-pasientforholdet syntes ikke kollegene at de ble overstyrt - retningslinjer og prosedyrer er faglig begrunnede og kan fravikes når man faglig kan begrunne det. Den utfordrende pasienten som har skaffet seg egen kunnskap oppleves gjennomgående ikke som et problem, men som en ansporing til å bli en bedre profesjonsutøver. Legeforeningen kan bidra til å befeste den profesjonelle autonomien gjennom blant annet et aktivt arbeid for standarder og kunnskapsoppdatering. Allerede eksisterer et initiativ i form av LEIF (legers etterutdanning i fremtiden) og lenge har diskusjonen om resertifisering vært et tema; denne type kvalitets- og tillitsbyggende arbeid vil være den naturlige plattformen for å bevare den profesjonelle autonomien

Benign external hydrocephalus: a review, with emphasis on management

Benign external hydrocephalus in infants, characterized by macrocephaly and typical neuroimaging findings, is considered as a self-limiting condition and is therefore rarely treated. This review concerns all aspects of this condition: etiology, neuroimaging, symptoms and clinical findings, treatment, and outcome, with emphasis on management. The review is based on a systematic search in the Pubmed and Web of Science databases. The search covered various forms of hydrocephalus, extracerebral fluid, and macrocephaly. Studies reporting small children with idiopathic external hydrocephalus were included, mostly focusing on the studies reporting a long-term outcome. A total of 147 studies are included, the majority however with a limited methodological quality. Several theories regarding pathophysiology and various symptoms, signs, and clinical findings underscore the heterogeneity of the condition. Neuroimaging is important in the differentiation between external hydrocephalus and similar conditions. A transient delay of psychomotor development is commonly seen during childhood. A long-term outcome is scarcely reported, and the results are varying. Although most children with external hydrocephalus seem to do well both initially and in the long term, a substantial number of patients show temporary or permanent psychomotor delay. To verify that this truly is a benign condition, we suggest that future research on external hydrocephalus should focus on the long-term effects of surgical treatment as opposed to conservative management

Epidemiology of benign external hydrocephalus in Norway - a population-based study

Background: Benign external hydrocephalus is defined as a rapidly increasing head circumference (occipitofrontal circumference) with characteristic radiological findings of increased subarachnoid cerebrospinal fluid spaces on neuroimaging. The incidence of benign external hydrocephalus has not been previously reported, and there is no available information on the ratio of benign external hydrocephalus in the population of hydrocephalic children. Methods: This study is retrospective and population-based study, geographically covering two health regions in the southern half of Norway with a total mean population of 3.34 million in the ten-year study period, constituting approximately 75% of the Norwegian population. Children with a head circumference crossing two percentiles, or greater than the 97.5th percentile, and with typical imaging findings of enlarged frontal subarachnoid spaces with or without enlarged ventricles were included. Children were excluded if they had a history of head trauma, intracranial hemorrhage, central nervous system infection, other known causes of hydrocephalus, or were born preterm defined as birth before 37 weeks of gestation. Results: A total of 176 children fitting the criteria were identified, giving an incidence of 0.4 per 1000 live births. One hundred fifty-two (86.4%) of the patients were male, and mean age at referral was 7.3 months. Increasing head circumference was the main reason for referral in 158 (89.8%) patients and the only finding in 60 (34.1%) patients. Thirty-seven (21%) children had normal ventricles on imaging; the remainder had increased ventricular size. The incidence of pediatric hydrocephalus in Norway is reported to be 0.75 per 1000 live births, thus benign external hydrocephalus accounts for approximately 50% of hydrocephalic conditions in this population. Conclusions: The incidence of benign external hydrocephalus was found to be 0.4 per 1000 live births in this population

Quality of life and physician-reported developmental, cognitive, and social problems in children with benign external hydrocephalus—long-term follow-up

Introduction: Benign external hydrocephalus (BEH) is characterized by too rapidly increasing head circumference in infants, combined with typical neuroimaging findings. Psychomotor developmental delay is typically seen during the first few years of life; after that, the children’s development assumedly normalizes. However, little is known about the long-term effects of BEH. Methods: In this retrospective population-based study, children diagnosed with BEH during the years 1994–2003 in Southern Norway were asked to participate. Included patients (age 8–18 years old) and their parents answered the PedsQL questionnaire. The patient’s family physicians contributed by giving information from medical records, with special emphasis on developmental, cognitive, and social function. Results: One hundred seventy-six children were identified with BEH. One hundred three patients and 86 parents completed the PedsQL questionnaire. Supplemental medical information for 142 of the patients was received, mainly from their family physicians. Children and adolescents with BEH score themselves better than the normative mean on health-related quality of life, while the parents score their BEH children within the normative mean, except for the school functioning subgroup, where they score significantly lower. Various developmental, physical, and social problems are reported, like mental retardation, speech problems, epilepsy, motor impairment, psychiatric disorders, and cognitive difficulties. Among these patients, there is a discrepancy in some areas between the child-reported and parent-reported quality of life. Conclusions: Children and adolescents who were diagnosed with BEH during infancy generally do well. However, for some patients, there appear to be various developmental, social, and cognitive problems, and they seem to struggle more in school than their healthy peers

Epidemiology of benign external hydrocephalus in Norway - a population-based study

Background: Benign external hydrocephalus is defined as a rapidly increasing head circumference (occipitofrontal circumference) with characteristic radiological findings of increased subarachnoid cerebrospinal fluid spaces on neuroimaging. The incidence of benign external hydrocephalus has not been previously reported, and there is no available information on the ratio of benign external hydrocephalus in the population of hydrocephalic children. Methods: This study is retrospective and population-based study, geographically covering two health regions in the southern half of Norway with a total mean population of 3.34 million in the ten-year study period, constituting approximately 75% of the Norwegian population. Children with a head circumference crossing two percentiles, or greater than the 97.5th percentile, and with typical imaging findings of enlarged frontal subarachnoid spaces with or without enlarged ventricles were included. Children were excluded if they had a history of head trauma, intracranial hemorrhage, central nervous system infection, other known causes of hydrocephalus, or were born preterm defined as birth before 37 weeks of gestation. Results: A total of 176 children fitting the criteria were identified, giving an incidence of 0.4 per 1000 live births. One hundred fifty-two (86.4%) of the patients were male, and mean age at referral was 7.3 months. Increasing head circumference was the main reason for referral in 158 (89.8%) patients and the only finding in 60 (34.1%) patients. Thirty-seven (21%) children had normal ventricles on imaging; the remainder had increased ventricular size. The incidence of pediatric hydrocephalus in Norway is reported to be 0.75 per 1000 live births, thus benign external hydrocephalus accounts for approximately 50% of hydrocephalic conditions in this population. Conclusions: The incidence of benign external hydrocephalus was found to be 0.4 per 1000 live births in this population

Quality of life and physician-reported developmental, cognitive, and social problems in children with benign external hydrocephalus—long-term follow-up

Introduction Benign external hydrocephalus (BEH) is characterized by too rapidly increasing head circumference in infants, combined with typical neuroimaging findings. Psychomotor developmental delay is typically seen during the first few years of life; after that, the children’s development assumedly normalizes. However, little is known about the long-term effects of BEH. Methods In this retrospective population-based study, children diagnosed with BEH during the years 1994–2003 in Southern Norway were asked to participate. Included patients (age 8–18 years old) and their parents answered the PedsQL questionnaire. The patient’s family physicians contributed by giving information from medical records, with special emphasis on developmental, cognitive, and social function. Results One hundred seventy-six children were identified with BEH. One hundred three patients and 86 parents completed the PedsQL questionnaire. Supplemental medical information for 142 of the patients was received, mainly from their family physicians. Children and adolescents with BEH score themselves better than the normative mean on health-related quality of life, while the parents score their BEH children within the normative mean, except for the school functioning subgroup, where they score significantly lower. Various developmental, physical, and social problems are reported, like mental retardation, speech problems, epilepsy, motor impairment, psychiatric disorders, and cognitive difficulties. Among these patients, there is a discrepancy in some areas between the child-reported and parent-reported quality of life. Conclusions Children and adolescents who were diagnosed with BEH during infancy generally do well. However, for some patients, there appear to be various developmental, social, and cognitive problems, and they seem to struggle more in school than their healthy peers

Anterior thalamic deep brain stimulation in refractory epilepsy: A randomized, double-blinded study

Objectives The safety and effect on seizure frequency of anterior thalamic nucleus deep brain stimulation were studied in this prospective, randomized, double‐blinded study. Patients were followed for 12 months. The first 6 months were blinded with regard to active stimulation or not. After 6 months, all patients received active stimulation. Material and methods Bilateral ANT electrodes were implanted into 18 patients suffering from focal, pharmacoresistant epilepsy. Antiepileptic treatment was kept unchanged from three months prior to operation. The Liverpool seizure severity scale (LSSS) was used to measure the burden of epilepsy. Results There was no significant difference between the 2 groups at the end of the blinded period at 6 months. However, when considering all patients and comparing 6 months of stimulation with baseline, there was a significant, 22% reduction in the frequency of all seizures (P = 0.009). Four patients had ≥50% reduction in total seizure frequency and 5 patients ≥50% reduction in focal seizures after 6 months of stimulation. No increased effect over time was shown. LSSS at 6 months compared to baseline showed no significant difference between the 2 groups, but a small, significant reduction in LSSS was found when all patients had received stimulation for 6 months. Conclusions Our study supports results from earlier studies concerning DBS as a safe treatment option, with effects even in patients with severe, refractory epilepsy. However, our results are not as encouraging as those reported from many other, mainly unblinded, and open studies

ANT-DBS in epilepsy shows no effect on selected neuropsychiatric tests

Objectives Deep brain stimulation of the anterior thalamic nucleus (ANT-DBS) is an established option in treatment-resistant epilepsy and obtained FDA approval in 2018. Increased psychiatric comorbidity is well known in epilepsy. The main objective of this study was to investigate possible neuropsychiatric treatment-related changes in patients receiving ANT-DBS. Materials and Methods Bilateral ANT electrodes were implanted in 18 adult patients with refractory epilepsy in a randomized, double-blinded study. Immediately after implantation, patients were randomized to stimulation ON (n = 8) or OFF (n = 10) for the first 6 months (blinded phase). During the next six months (open phase), both groups received active stimulation. Neuropsychiatric assessment was conducted before implantation (T1), at the end of the blinded period (T2), and 1 year after implantation (T3). Results Comparing preoperative status (T1) and 12 months (T3), postoperative outcome in all patients did not show significant differences between the two groups for any of the applied tests. Groupwise comparisons across the two first time points (the blinded period, representing the randomized controlled trial) showed no significant differences between the two groups in any of the neuropsychiatric parameters studied. Comparing test results after 6 months of stimulation in both groups (sum of ON group T1 to T2 and OFF group T2 to T3) did not show significant changes for any of the psychiatric assessments. Conclusions Our results indicate that ANT-DBS has limited effect concerning psychiatric issues. Subjective side effects were, however, reported in individual patients

Direct visual targeting versus preset coordinates for ANT-DBS in epilepsy

Objectives Deep brain stimulation (DBS) of the anterior thalamic nucleus (ANT) may be used against refractory focal epilepsy, but only two randomized double‐blinded trials have been performed. The Oslo study was discontinued prematurely since reduction in seizure frequency was less than expected. The aim of the present study was to review the targeting used in the Oslo study and to identify the actual positions of the contacts used for stimulation. Material and methods BrainLab MRI data were available from 12 Oslo study patients. Based on MRI the coordinates of the center of the ANT were identified. The coordinates were considered as the visually identified preferred target and were compared with the target originally used for ANT electrode implantation and with the actual electrode positions estimated from post‐operative CT scans. Results We found considerable differences between the visually identified preferred target, the originally planned target, and the actual electrode position. The total distance between the active electrode position and the visually identified preferred target was on average 3.3 mm on the right and 2.9 mm on the left side. Conclusion Indirect targeting based on preset coordinates may contribute to explain the modest effect of ANT‐DBS on seizure frequency seen in the Oslo study. Observed differences between the center of the ANT and the actual electrode position may at least in part be explained by variations in position and size of the ANT. Direct identification of the target using better MRI imaging protocols is recommended for future ANT‐DBS surgery