Kvaliteta partnerskega odnosa in spolna disfunkcija pri bolnikih z multiplo sklerozo v povezavi z zadovoljstvom z zdravljenjem z imunomodulatornim zdravilom : doktorska desertacija

Pirečnik Noč, Anita (avtor), Gostečnik, Christian (mentor), Šega, Saša (komentor)

Multipla skleroza (MS) je kronična vnetna demielinizacijska bolezen osrednjega živčevja domnevno z avtoimunskim izvorom, ki prizadene posameznika v njegovih najbolj produktivnih letih življenja. Večinoma zbolijo ljudje med 20. in 40. letom starosti, ženske 2- do 4-krat pogosteje kot moški. To je čas, ko si posameznik poišče partnerja, si želi ustvariti družino in je na višku svoje poklicne kariere. Bolezen zaznamuje partnerski odnos in vpliva na celotno družino. Zaradi same bolezni, njenih simptomov, neželenih učinkov zdravil, psihičnih, socialnih in kulturnih razlogov se lahko pojavijo spremembe v spolnosti, za katero pa je znano, da je pomemben del partnerskega odnosa. V literaturi nismo zasledili raziskav o tem, ali je zadovoljstvo z zdravljenjem z zdravili povezano s partnerskim odnosom in spolno disfunkcijo, zato smo želeli v doktorski disertaciji odgovoriti prav na to vprašanje, saj vemo, da morajo bolniki z MS več let in desetletij jemati imunomodulatorna zdravila, ki lahko imajo neželene učinke. Ti vplivajo na kvaliteto njihovega življenja in vsakodnevno funkcioniranje. Raziskava je razdeljena na tri dele. V prvem nas je zanimalo, koliko bolnikov z multiplo sklerozo, ki prejemajo enega od imunomodulatornih zdravil, je v partnerski zvezi, koliko je ločenih in koliko samskih. V drugem delu smo iskali morebitno povezanost med zadovoljstvom z zdravljenjem, partnerskim odnosom in stopnjo spolne disfunkcije. Pri tem smo upoštevali tudi stopnjo nevrološke prizadetosti in trajanje bolezni. Prav tako nas je zanimalo, ali so bolniki z enostavnejšim načinom zdravljenja v obliki tablet in infuzij bolj zadovoljni, imajo kvalitetnejši partnerski odnos in manj pogosto spolno disfunkcijo kot bolniki, ki si sami vbrizgavajo zdravilo v podkožje ali mišico. S tretjim, kvalitativnim delom raziskave pa smo nadgradili kvantitativne rezultate. V kvantitativni del raziskave je bilo vključenih 588 bolnikov. Uporabili smo tri merske pripomočke: Vprašalnik o zadovoljstvu zdravljenja z zdravili (angl. Treatment Satisfaction Questionnaire for Medication – TSQM, verzija 1.4), Kvaliteta partnerskega odnosa, lestvica diadne regulacije (angl. Dyadic adjustment scale – DAS) in Vprašalnik o intimnosti in spolnosti (angl. Multiple Sclerosis Intimacy and Sexuality Questionnaire – MSISQ-19). Ugotovili smo, da je večina bolnikov, ki prejemajo imunomodulatorno terapijo, poročenih ali pa živijo v izvenzakonski partnerski zvezi, da so bolniki z enostavnejšim načinom zdravljenja, ki smo ga definirali kot jemanje tablet ali prejemanje infuzij, v primerjavi z zapletenejšim načinom zdravljenja v obliki injekcij bolj zadovoljni ter da je bila pri enostavnejšem načinu zdravljenja manj pogosta sekundarna in terciarna spolna disfunkcija, vrsta zdravljenja pa ni vplivala na kvaliteto partnerskega odnosa. V tretjem delu smo zbrane podatke, ki smo jih pridobili s poglobljenimi intervjuji, analizirali po metodologiji osnovane teorije. Izpostavili smo pomembne vidike življenja bolnikov z MS, ki so v partnerskem odnosu. Oblikovali smo pet kategorij: partnerski odnos, prosti čas, bolezen in zdravljenje, fizične spremembe v funkcioniranju in spolnost. Razvili smo osnutek modela MS DANES, ki bi nam lahko pomagal pri obravnavi bolnikov v centrih za MS. S pomočjo tega bi dobili širšo sliko o tem, kako bolnik živi z boleznijo, kako prenaša zdravljenje, kašen je njegov odnos s partnerjem ter kakšen je njegov socialni in ekonomski status. Rezultati bodo prispevali nova znanja za razvoj in oblikovanje intervenc v relacijski družinski in zakonski terapiji ter bodo v pomoč kako v terapevtskem procesu pristopiti k bolnikom z multiplo sklerozo.

• Jezik: Slovenski jezik
• Ključne besede: multipla skleroza, partnerski odnos, spolna disfunkcija, imunomodulatorno zdravljenje
• Vrsta gradiva: Doktorsko delo/naloga
• Tipologija: 2.08 - Doktorska disertacija
• Organizacija: TEOF - Teološka fakulteta
• Kraj izida: Ljubljana
• Založnik: [A. Pirečnik Noč]
• Leto izida: 2022
• Št. strani: X, 204 str.
• PID: 20.500.12556/RUL-138703
• UDK: 159.922.2:616.832-004(043.3.)
• COBISS.SI-ID: 119883779
• Datum objave v RUL: 10.08.2022

Sekundarni jezik

• Jezik: Angleški jezik
• Naslov: Quality of partnership and sexual dysfunction in patients with multiple sclerosis in relationship with the satisfaction with imunomodulatory treatment

Izvleček

Multiple sclerosis is chronic inflammatory disease with presumed autoimmune ethology which typically occurs during the most productive period of life. It mostly affects people between 20 and 40 years old and has 2-4 times greater incidence in women. This is also a period in life when a person looks for a partner, establish a family and is usually also at the top of professional carrier. Multiple sclerosis has thereby strong influence of partner relationship and family life as such. Symptoms, possible side effects of medical treatment, psychological, social and cultural issues may influence sexual activity which represents very important component of partner relationship. Since there are, to our knowledge, no studies investigating relationship between satisfaction with multiple sclerosis treatment, partner relationship and sexual dysfunction, we addressed this topic which is even more important in view of long-term immunomodulatory treatment with significant side effects influencing every day quality of life. Our study is divided into the three parts. We initially addressed marital status of patients with multiple sclerosis on immunomodulatory treatment and determined the proportions of patients who were in either partner relationship, divorced or single. We then investigated possible relationship between satisfaction with multiple sclerosis treatment, quality of partner relationship and sexual dysfunction considering the degree of neurological disability and duration of the disease. We further investigated if patients with more simple treatment including tablets and infusions were more satisfied, have better partner relationship and less frequent sexual dysfunction compared to patients with more complex treatment including administration of the drug by subcutaneous/intramuscular injections. The third part of our study was qualitative and aimed to complement quantitative research. We included 588 patients and use three questionnaires: Treatment Satisfaction Questionnaire for Medication – TSQM, Dyadic adjustment scale – DAS and Multiple Sclerosis Intimacy and Sexuality Questionnaire – MSISQ-19. We found that majority of patients with multiple sclerosis on immunomodulatory treatment were married or had extramarital relationship. Patients receiving more simple treatment with tablets and infusions were more satisfied compared to patients on subcutaneous/intramuscular injections. More simple treatment was associated also with less secondary and tertiary dysfunction. There was, however, no association between mode of treatment and quality of partner relationship. Herein presented qualitative analysis was based on grounded theory. We exposed important aspects of life in patients with multiple sclerosis who are in partner relationship. We established 5 categories including partner relationship, spare time, disease and treatment, changes in physical status and sexuality. We developed a model »MS TODAY« aimed to facilitate treatment of patients in centres for multiple sclerosis. This would enable more comprehensive view on patient life with multiple sclerosis, tolerance of immunomodulatory treatment, partner relationship and social as well as economic status. Our results are expected to contribute new evidence which will facilitate target interventions in relationship and family therapy in patients with multiple sclerosis.

• Ključne besede: multiple sclerosis, partner relationship, sexual dysfunction, immunomodulatory treatment