Christiansen, Christina Herlin

Hansen, Signe Slot

Jørgensen, Josefine Søborg

Baggrund: Juvenil idiopatisk artritis er en kronisk autoimmun sygdom, hvis årsag endnu er ukendt. Sygdommen er karakteriseret ved høj infiltrering af lymfocytiske celler i det synoviale hulrum. Sygdommen kommer ofte til udtryk ved symptomer bestående af hævelse og inflammation af led. Juvenil idiopatisk artritis rammer hvert år omtrent 1200 børn i Danmark, i alderen 0-16 år. I USA er forekomsten af juvenil idiopatisk artritis 4-14 tilfælde per 100.000 børn hvert år. Sygdommen er svær at diagnosticere og medicinere grundet lidelsens mange forskellige karaktertræk. Formål: Formålet med dette semesterprojekt er at undersøge, hvordan etiske principper forholder sig til de nuværende retningslinjer for diagnosticering og behandling af patienter med juvenil idiopatisk artritis. Dertil hvordan etiske principper kan bruges til at argumentere for og imod en optimering af diagnosticerings – og behandlingsproceduren for patienter med juvenil idiopatisk artritis. Metode: Semesterprojektet indeholder en spørgeskemaundersøgelse. Formålet med undersøgelsen var at inddrage patienters egne oplevelser, for at understøtte etiske princippers argumentation for og imod optimering af en diagnosticerings – og behandlingsprocedure hos patienter med juvenil idiopatisk artritis. Resultater: 34 patienter deltog i spørgeskemaundersøgelsen. Spørgeskemaundersøgelsens resultater viste henholdsvis diversitet og ligheder mellem sygdomsforløbet hos patienter med juvenil idiopatisk artritis. Resultaterne til spørgeskemaundersøgelsen viste at der er en tendens til langsigtede diagnosticeringstider blandt patienterne, og at mange af patienterne er svært hæmmet af deres sygdom i hverdagen trods påbegyndt medicinsk behandling. Til undersøgelsen var der tilfælde af 5 juvenil idiopatisk artritis undertyper, ud af de 7 mulige. Undersøgelsen viste ligeså at patienterne reagerede forskelligt på præparaterne, men at de føler sig godt velinformeret om den type medicin de får. Konklusion: Det kan konkluderes at de etiske argumenter, fremført af pligt – og nytteetiske perspektiver, er uenige om hvorvidt det er nødvendigt at optimere diagnosticerings – og behandlingsproceduren for patienter med JIA. Pligtetikere er fortaler for en optimering af de respektive procedurer, hvorimod nytteetikere primært er imod en optimering af de respektive procedurer. Tre ud af fire medicinske etiske principper kan potentielt være fortalere for en optimering af diagnosticeringsprocedure samt den efterfølgende behandlingsprocedure for patienter med JIA.Background: Juvenile idiopathic arthritis is a chronic autoimmune disease where the cause is still unknown. The characteristic of Juvenile idiopathic arthritis includes high infiltration of lymphocytic cells into the synovial cavity. Juvenile idiopathic arthritis can also be characterized by systemic inflammation and is the most common form of arthropathy in children leading to joint discomfort and physical restriction. The disease affects approximately 1200 children, at the aged of 0-16 years, every year in Denmark. In the United States the incidence for juvenile idiopathic arthritis range from 4-14 cases per 100.000 children annually. However, the disease is difficult to diagnose and medicate against, due to the many characteristics of the disease. Aim: The purpose of this research project is to examine how ethical principles associates to the current way of diagnosing as well as treating patients with juvenile idiopathic arthritis. In addition, the research project will also identify how ethical principles will argue for an optimization of diagnosis and treatment of patients with juvenile idiopathic arthritis.Method: This research project includes a questionnaire survey. The purpose of the survey was to include patients' own experiences to support the ethical argumentations in relation to pros and cons against optimization of diagnosis and medical treatment of patients with juvenile idiopathic arthritis. Results: 34 patients participated in the questionnaire survey. The results of the questionnaire survey showed diversity likewise common features between the patients. The results of the questionnaire survey showed that there is a tendency for patients to go for a long time before they get a diagnosis, and that many of the patients, who participated in the questionnaire survey, are severely impaired by their illness in everyday life. This questionnaire survey showed cases of 5 juvenile idiopathic arthritis subtypes, out of the 7 possible. The study also showed that patients reacted differently to different kinds of medication, but they feel well informed about the types of medication they received.Conclusion: This research project shows that the ethical arguments stated by deontology and utilitarianism, disagree on whether it is necessary to optimize the diagnosis and treatment procedure for patients with juvenile idiopathic arthritis. Deontology is in favor of an optimization of the respective procedures, whereas utilitarianism is primarily against an optimization of the respective procedures. Three out of four medical ethics could potentially advocate an optimization of diagnostic procedure as well as the subsequent treatment procedure for patients with juvenile idiopathic arthritis<br/

Ethical considerations regarding the diagnosis and treatment of patients with juvenile idiopathic arthritis

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