Potrebe za palijativnim zbrinjavanjem obolelih od multiple skleroze, Parkinsonove bolesti i amiotrofične lateralne skleroze

Abstract

Uvod: Progresijom neizlečivih neuroloških bolesti, poput multiple skleroze (MS), Parkinsonove bolesti (PB) i amiotrofične lateralne skleroze (ALS) dolazi do ispoljavanja složenih fizičkih, psihičkih i kognitivnih oštećenja, koja dovode do funkcionalne onesposobljenosti, gubitka autonomije, poteškoća u socijalnom funkcionisanju i značajnog narušavanja kvaliteta života koje bi se mogle rešiti ili ublažiti palijativnim zbrinjavanjem. Kako bi se adekvatno isplanirale i sprovele usluge palijativnog zbrinjavanja, ključno je identifikovati i definisati potrebe obolelih. Ciljevi ovog istraživanja bili su da se identifikuju fizički simptomi i znakovi bolesti kod obolelih od MS, PB i ALS koji se mogu ublažiti palijativnim zbrinjavanjem, prisustvo bola, kao i da se proceni nivo njihove funkcionalne nezavisnosti u aktivnostima dnevnog života. Materijal i metode: Istraživanje je sprovedeno na Klinici za neurologiju Kliničkog centra Vojvodine u Novom Sadu, kao prospektivna studija sa retrospektivnim delovima. Uzorak je činilo 154 pacijenta. Kao instrumenti istraživanja korišćeni su: Opšti upitnik; Šefildov profil za procenu i upućivanje na negu (SPARC); Numerička skala za procenu intenziteta bola (NPRS); Bartelov indeks (BI); Upitnik o uticaju multiple skleroze (MSIS-29); Upitnik o kvalitetu života za Parkinsonovu bolest (PDQL); Revidirana skala funkcionalnosti pacijenata sa amiotrofičnom lateralnom sklerozom (ALSFRS-R). Rezultati: Utvrđena je značajna razlika u ispoljavanju fizičkih simptoma između tri grupe obolelih (F=14.012, p<0.001), pri čemu su najslabije izraženi fizički simptomi među obolelima od multiple skleroze, zatim slede oboleli od Parkinsonove bolesti, a najizraženiji su kod obolelih od amiotrofične lateralne skleroze. Bol je bio prisutan kod oko dve trećine obolelih (n=100; 64.9%), odnosno 77.8% obolelih od amiotrofične lateralne skleroze je prijavilo prisistvo bola, 68,8% obolelih od Parkinsonove bolesti i 62,5% obolelih od multiple skleroze. Nije utvrđena značajna razlika u prisustvu bola između tri grupe obolelih (p=0.423). Nivo funkcionalne zavisnosti je bio veći kod obolelih od Parkinsonove bolesti i obolelih od amiotrofične lateralne skleroze u odnosu na obolele od multiple skleroze. Potpuna zavisnost je bila prisutna kod 7.5% obolelih od multiple skleroze, kod svakog osmog obolelog od Parkinsonove bolesti (12.5%) i kod više od četvrtine obolelih od amiotrofične lateralne skleroze (27.8%). Najviši nivo potreba za palijativnim zbrinjavanjem je polovina obolelih od PB i od ALS, i nešto manje od trećine obolelih od MS iskazala za fizičke simptome. Zaključak: Najizraženiju potrebu za palijativnim zbrinjavanjem između tri grupe ispitanika imaju oboleli od amiotrofične lateralne skleroze, zatim oboleli od Parkinsonove bolesti. Najzastupljeniji zajednički simptomi i znakovi bolesti u sve tri ispitivane grupe, koji se mogu ublažiti palijativnim zbrinjavanjem su: osećaj slabosti, osećaj umora, problemi sa crevima, problemi sa mokraćnom bešikom i bol. Većina pacijenata iz sve tri ispitivane grupe je zavisno od pomoći drugih osoba u obavljanju aktivnosti dnevnog života. Stepen zavisnosti je veći kod obolelih od amiotrofične lateralne skleroze i Parkinsonove bolesti u odnosu na obolele od multiple skleroze.

Introduction: Progression of incurable neurological diseases, such as multiple sclerosis (MS), Parkinson's disease (PD), and amyotrophic lateral sclerosis (ALS), leads to the manifestation of complex physical, mental and cognitive impairments, causing functional disability, loss of autonomy, difficulties in social functioning and significant impairment of quality of life that could be solved or mitigated by palliative care. It is crucial to identify and define patients' needs to plan and implement palliative care services adequately. The objectives of this study were to identify physiological symptoms and signs of disease in MS, PB, and ALS patients that can be alleviated by palliative care, determine the presence of pain, and assess the level of their unctional independence in daily activities. Material and methods: The research was carried out at the Neurology Clinic of the Clinical Center of Vojvodina in Novi Sad as a prospective study with retrospective parts. The sample comprised 154 patients. The following were used as research instruments: General questionnaire; Sheffield Profile for Assessment and Referral for Care (SPARC); Numerical Pain Rating Scale (NPRS); Barthel Index (BI); Multiple Sclerosis Impact Scale (MSIS-29); Parkinson's Disease Quality of Life Questionnaire (PDQL); Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R). Results: A significant difference in the manifestation of physical symptoms was found between the three groups of patients (F = 14.012, p <0.001), with the least pronounced physical symptoms among multiple sclerosis patients, followed by Parkinson's disease patients; the most pronounced symptoms were found in amyotrophic lateral sclerosis patients, and pain was present in about two-thirds of patients (n = 100, 64.9%), i.e., 77.8% of amyotrophic lateral sclerosis patients, 68.8% of Parkinson's disease patients and 62.5% of multiple sclerosis patients reported the presence of pain. No significant difference in the presence of pain was found between the three groups of patients (p = 0.423). The level of functional dependency was higher in patients with Parkinson's disease and patients with amyotrophic lateral sclerosis than patients with multiple sclerosis. Complete dependency was present in 7.5% of patients with multiple sclerosis, in one in eight patients with Parkinson's disease (12.5%), and in more than a quarter of patients with amyotrophic lateral sclerosis (27.8%). The highest level of need for palliative care was found in half of the PB and ALS patients, and slightly less than a third of the MS patients showed physical symptoms. Conclusion: Among the three groups of participants, amyotrophic lateral sclerosis patients have the most pronounced need for palliative care, followed by patients with Parkinson's disease. The most common symptoms and signs of the disease in all three study groups which can be alleviated by palliative care are feeling weak, feeling tired, bowel problems, bladder problems, and pain. The majority of patients from all three study groups depend on other people's help in daily activities. The degree of dependency is higher in patients with amyotrophic lateral sclerosis and Parkinson's disease than patients with multiple sclerosis.