Quality of life with epilepsy

Epilepsija ima veliki utjecaj na kvalitetu života osoba s epilepsijom kao i na članove njihove obitelj. Osobi koja se liječi zbog epilepsije navedena dijagnoza predstavlja teret kako zbog fizičke opasnosti od nepredvidivih napada tako i zbog socijalne isključenosti, kao posljedica negativnih stavova prema osobama s epilepsijom. Stigma koju ova dijagnoza nosi može spriječiti odrasle osobe u sklapanju braka ili osobama koje se liječe zbog epilepsije može biti uskraćeno zapošljavanje čak i kada napad ne bi njihov rad učinio neprikladnim ili nesigurnim. Učestalost napada, životna dob u vrijeme postavljanja dijagnoze i kroničnost bolesti utječu na kvalitetu života i mogu utjecati na sposobnost psihosocijalne prilagodbe osoba s epilepsijom. Glavni cilj ovog rada je istražiti utjecaj epilepsije na kvalitetu života oboljelih osoba. Istraživanje se odnosi na osobe oboljele od epilepsije, koje se liječe u KBC-u Zagreb, Klinici za neurologiju u Odjelu za epilepsije i paroksizmalne poremećaje svijesti i Referentnom centru Ministarstva zdravstva RH za epilepsiju starijim od 18 godina. Provedeno je presječno istraživanje nad 422 osobe oboljele od epilepsije starije od 18 godina, koje dolaze na redovne kontrole i pristale su ispuniti anketni upitnik u periodu od dva mjeseca. Od toga su 362 osobe anketni upitnik ispunile u cijelosti. Za obradu i analizu podataka dobivenih istraživanjem korišten je računalni program MedCalc® Statistical Software version 22.006 (MedCalc Software Ltd, Ostend, Belgium; https://www.medcalc.org; 2023). Rezultati dobiveni ovim istraživanjem pokazali su da je 92,8% ispitanika upoznalo društvo sa svojom bolešću, 15,5% smatra se manje vrijednim članom društva zbog svoje bolesti. Redovito uzima lijekove 92,3% ispitanika. Neurokirurško liječenje bilježi se kod 35,6% ispitanika. Medijan ukupne kvalitete života je 68,7 (interkvartilnog raspona 54,2 do 82,5) u rasponu od 13,3 do 97,8. Nešto je slabije zadovoljstvo dnevnim aktivnostima, medijana 55 (interkvartilnog raspona od 40 do 70). Također ukupna kvaliteta života skale QUOLIE-31 značajno je bolje ocijenjena u skupini muškaraca u odnosu na žene (Mann Whitney U test, P = 0,002). Nema značajnih razlika u ocjeni pojedine domene i ukupne skale QOLIE-31 u odnosu na dobne skupine. Svi bolesnici koji se smatraju manje vrijednim članom društva zbog svoje bolesti, značajno su nezadovoljni kvalitetom života u svim domenama i u ukupnoj skali QOLIE-31 (Mann Whitney U test, P < 0,001). Bolesnici koji su liječeni neurokirurški, značajno su lošije ocijenili kvalitetu domene Socijalno funkcioniranje ( Mann Whitney U test, P = 0,001), u odnosu na one koji nisu liječeni neurokirurški, dok u drugim domenama i u ukupnoj skali nema značajnih razlika. Nema statistički značajne razlike u ocjeni pojedine domene i ukupne skale QOLIE-31 u odnosu na to uzimaju li lijekove redovito ili ne. Spaermanovim koeficijentom korelacije ocijenila se povezanost dobi i trajanja bolesti s pojedinim domenama i ukupnom skalom kvalitete života. Postoji pozitivna, slaba i značajna povezanost dobi oboljelih s domenom Briga o utjecaju lijeka (Rho= 0,133). Što je dulje trajanje bolesti to je domena Raspoloženja ocijenjena nižom ocjenom (Rho = -0,127), dok u ostalim domenama i ukupnoj skali ne bilježe se značajne povezanosti. Zaključno, samoprocjenom kvalitete života oboljelih saznaje se da je domena Socijalno funkcioniranje kod osoba koje su neurokirurški liječene, značajno lošije ocijenjena. Potrebna su detaljnija istraživanja kvalitete života kod neurokirurški liječenih osoba s epilepsijom.Epilepsy has a great impact on the quality of life of people with epilepsy as well as on their family members. For a person who is being treated for epilepsy, the aforementioned diagnosis is a burden both due to the physical danger of unpredictable attacks and due to social exclusion, as a result of negative attitudes towards people with epilepsy. The stigma associated with this diagnosis can prevent adults from marrying, or people being treated for epilepsy can be denied employment even when the seizure would not make their work inappropriate or unsafe. The frequency of attacks, the age at the time of diagnosis and the chronicity of the disease affect the quality of life and can affect the ability of psychosocial adaptation of people with epilepsy. The main goal of this paper is to investigate the impact of epilepsy on the quality of life of affected persons. The research refers to people suffering from epilepsy, who are treated at KBC Zagreb, the Clinic for Neurology in the Department for Epilepsy and Paroxysmal Disorders and the Reference Center of the Ministry of Health of the Republic of Croatia for epilepsy over the age of 18. A cross-sectional study was conducted on 422 people with epilepsy over the age of 18, who came for regular check-ups and agreed to fill out a questionnaire over a period of two months. Of these, 362 people filled out the questionnaire in its entirety. The computer program MedCalc® Statistical Software version 22.006 (MedCalc Software Ltd, Ostend, Belgium; https://www.medcalc.org; 2023) was used to process and analyze the data obtained from the research. The results obtained from this research showed that 92.8% of respondents informed society about their illness, 15.5% considered themselves a less valuable member of society because of their illness. 92.3% of respondents take medication regularly. Neurosurgical treatment was recorded in 35.6% of respondents. The median overall quality of life is 68.7 (interquartile range 54.2 to 82.5) ranging from 13.3 to 97.8. Satisfaction with daily activities is slightly lower, median 55 (interquartile range from 40 to 70). Also, the overall quality of life of the QUOLIE-31 scale was rated significantly better in the group of men compared to women (Mann Whitney U test, P = 0.002). There are no significant differences in the assessment of individual domains and the overall QOLIE-31 scale compared to age groups. All patients who are considered a less valuable member of society because of their disease are significantly dissatisfied with the quality of life in all domains and in the overall QOLIE-31 scale (Mann Whitney U test, P < 0.001). Patients who were treated neurosurgically rated the quality of the Social Functioning domain significantly worse (Mann Whitney U test, P = 0.001), compared to those who were not treated neurosurgically, while there were no significant differences in other domains and in the overall scale. There is no statistically significant difference in the assessment of individual domains and the overall QUOLIE-31 scale in relation to whether they take medication regularly or not. Spaerman's correlation coefficient was used to assess the relationship between age and disease duration with individual domains and the overall quality of life scale. There is a positive, weak and significant correlation between the age of the patients and the domain Worry about the influence of the drug (Rho= 0.133). The longer the duration of the disease, the lower the Mood domain (Rho = -0.127), while in other domains and the overall scale no significant associations are recorded. In conclusion, the self-assessment of the quality of life of the patients revealed that the Social Functioning domain was rated significantly worse in people who underwent neurosurgical treatment. More detailed research on the quality of life in neurosurgically treated people with epilepsy is needed