Nurse's perspective on comprehensive haemophilia patient care

Hemofilija je nasljedna bolest koja dovodi do sklonosti krvarenja ubraja se u rijetke bolesti, a zbog svoje specifičnosti se skrb za bolesnike s hemofilijom najčešće provodi u specijaliziranim centrima. U Hrvatskoj od hemofilije boluje oko 450 bolesnika, od kojih oko 150 ima tešku kliničku sliku bolesti. Cilj ovog preglednog rada je naglasiti važnost dobro organizirane skrbi bolesnika s hemofilijom u Centru kao i doprinos visoke razine sestrinske skrbi za bolesnika s ovom rijetkom bolesti. U svrhu dokumentiranja stanja i promjena kod bolesnika u ovom diplomskom radu izrađena je sestrinska dokumentacija koja se temelji na standardnoj sestrinskoj dokumentaciji, a pregledom literature utvrđene su specifične potrebe bolesnika s hemofilijom koje su implementirane u dokumentaciju. Izrađena dokumentacija olakšava praćenje stanja bolesnika i pomaže prilikom personaliziranja liječenja bolesnika s hemofilijom, te omogućava detaljan uvid u stanje bolesnika cijelom multidisciplinarnom timu. Sustavno praćenje i evidentiranje stanja bolesnika, gdje uvelike pomaže i sestrinska dokumentacija, omogućava bolji uvid u stanje bolesnika i kvalitetu njegova života, te ukazuje na raspoložive resurse u poboljšanju kvalitete zbrinjavanja bolesnika s hemofilijom. Medicinska sestra također pomaže u koordinaciji specijalističkih pregleda u Centru za hemofiliju. Dobro educirana sestra svojim znanjem, vještinama i iskustvom znatno skraćuje boravak bolesnika u Centru, upravlja edukacijom bolesnika i obitelji te na taj način direktno utječe na poboljšanje kvalitete života bolesnika s hemofilijoHaemophilia is an inherited disorder which belongs to a group of rare diseases and, for its specificity, the patients with haemophilia are most frequently treated in specialised centres. In Croatia, there are about 450 patients suffering from haemophilia, of which about 150 show a severe clinical condition of the disease. The aim of this review paper is to emphasize the importance of well-organised treatment of patients with haemophilia, as well as the contribution of a high level of nursing care for patients with this rare disorder. In order to document conditions and changes in patients, in this thesis the nursing documentation based on standard nursing documentation was prepared, while the literature overview identified specific needs of patients with haemophilia which were implemented in the documentation. Previously mentioned prepared documentation facilitates the monitoring of a patient condition and contributes to the personalisation of treatment of a patient with haemophilia, as well as provides the entire multidisciplinary team with a detailed insight into a patient condition. Regular monitoring and recording of a patient condition, where nursing documentation is of a great importance as well, gives a better insight into a patient condition, contributes to the improved quality of their life and indicates the available resources in improving the quality of treatment of patients with haemophilia. A nurse also helps to coordinate the specialized examinations at the Treatment Centre. A well - educated nurse, applying the acquired knowledge, skills and experience, shortens significantly a patient's stay at the Centre, manages the education of patients and families and, in that way, directly improves the quality of life of a patient with haemophilia