Ar veselību saistīta dzīves kvalitāte pacientiem ar McCune - Albright sindromu
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Date
2023
Authors
Journal Title
Journal ISSN
Volume Title
Publisher
Rīgas Stradiņa universitāte
Rīga Stradiņš University
Rīga Stradiņš University
Abstract
McCune – Albright ir rets sindroms, un pagaidām nav statistikas datu par sindroma
izplatību pasaulē, aptuvenā sastopamība svārstās no 1/100 000 līdz 1/1 000 000 (Holbrook et al.,
2022). Pēc “Slimības profilakses un kontroles” datiem Latvijā ir sastopami pieci pacienti ar
McCune – Albright sindromu (SPKC, 2022).
Ļaujot pacientiem novērtēt savu dzīves kvalitāti, var atklāt problēmas, kuras mērķtiecīgi ir
jānovērš, tas veidotu izpratni par nepieciešamību ieviest izmaiņas ārstēšanā un aprūpē, vai pat
norādīt uz kādas terapijas neefektivitāti (Haraldstad et al., 2019).
Pētījuma mērķis: Noskaidrot ar veselību saistītu dzīves kvalitāti pacientiem ar McCune Albright sindromu.
Pētījuma jautājums: Kāda ir ar veselību saistīta dzīves kvalitāte pacientiem ar McCune–
Albright sindromu?
Pētījuma uzdevumi:
1. Noskaidrot, kādas fiziskās aktivitātes, tai skaitā arī ikdienas aktivitātes, pacientiem
ar McCune - Albright sindromu ir visvairāk ietekmētas.
2. Noskaidrot, vai pastāv un cik bieži pacientiem ar McCune - Albright sindromu
novēro emocionāla rakstura problēmas un vai tās ietekmē arī viņu sabiedrisko dzīvi.
3. Noteikt sāpju stiprumu pēdējo 4 nedēļu laikā.
4. Izvērtēt, pacientu ar McCune - Albright sindromu, pašsajūtu.
Rezultāti: No visiem respondentiem sievietes piedalījās visvairāk – 88 % (n = 44), bet
vīrieši 12 % (n = 6). Vecuma grupā no 48 gadiem līdz 62 gadiem rezultāti tika iegūti zemāki nekā
pārējās vecuma grupās, bet viszemākais rezultāts no visiem dzīves kvalitātes rādītājiem bija
emocionālais stāvoklis – 33,59 balles.
Secinājumi: Pacientiem ar McCune – Albright sindromu ar veselību saistīti dzīves
kvalitātes rādītāji nepārsniedz vidējo vērtību 50, norādot par zemāku dzīves kvalitāti nekā
vispārējā populācijā.
Kvalifikācijas darbs sastāv no 60 lapām, iekļautas 15 diagrammas, izmantoti 39 zinātniskās
literatūras avoti, pievienoti 7 pielikumi.
McCune-Albright syndrome is a rare condition, and currently there are no statistical data on the worldwide prevalence of the syndrome. The estimated prevalence ranges from 1 in 100,000 to 1 in 1,000,000 (Holbrook et al., 2022). According to data from the "Center for Disease Prevention and Control", in Latvia there are five patients with McCune-Albright syndrome (SPKC, 2022). By allowing patients to assess their quality of life, problems that need to be addressed can be identified, leading to an understanding of the need for changes in treatment and care, or even indicating the ineffectiveness of certain therapies (Haraldstad et al., 2019). Objective of the study: To determine the health - related quality of life in patients with McCune-Albright syndrome. Research question: What is the health - related quality of life in patients with McCune Albright syndrome? Research objectives: 1. Determine the physical activities, including daily activities, that are most affected in patients with McCune - Albright syndrome. 2. Determine if emotional problems are present and how often they impact the social life of patients with McCune - Albright syndrome. 3. Assess the intensity of pain experienced in the past 4 weeks. 4. Evaluate the well - being of patients with McCune - Albright syndrome. Results: Among all respondents, females accounted for the majority - 88% (n = 44), while males accounted for 12% (n = 6). In the age group from 48 to 62 years, the results were lower compared to other age groups, with the lowest result among all quality of life indicators being the emotional state - 33.59 points. Conclusions: Health - related quality of life indicators in patients with McCune - Albright syndrome do not exceed the average value of 50, indicating a lower quality of life compared to the general population. The qualification work consists of 60 pages, including 15 diagrams, 39 scientific literature sources were used, and 7 appendices are attached.
McCune-Albright syndrome is a rare condition, and currently there are no statistical data on the worldwide prevalence of the syndrome. The estimated prevalence ranges from 1 in 100,000 to 1 in 1,000,000 (Holbrook et al., 2022). According to data from the "Center for Disease Prevention and Control", in Latvia there are five patients with McCune-Albright syndrome (SPKC, 2022). By allowing patients to assess their quality of life, problems that need to be addressed can be identified, leading to an understanding of the need for changes in treatment and care, or even indicating the ineffectiveness of certain therapies (Haraldstad et al., 2019). Objective of the study: To determine the health - related quality of life in patients with McCune-Albright syndrome. Research question: What is the health - related quality of life in patients with McCune Albright syndrome? Research objectives: 1. Determine the physical activities, including daily activities, that are most affected in patients with McCune - Albright syndrome. 2. Determine if emotional problems are present and how often they impact the social life of patients with McCune - Albright syndrome. 3. Assess the intensity of pain experienced in the past 4 weeks. 4. Evaluate the well - being of patients with McCune - Albright syndrome. Results: Among all respondents, females accounted for the majority - 88% (n = 44), while males accounted for 12% (n = 6). In the age group from 48 to 62 years, the results were lower compared to other age groups, with the lowest result among all quality of life indicators being the emotional state - 33.59 points. Conclusions: Health - related quality of life indicators in patients with McCune - Albright syndrome do not exceed the average value of 50, indicating a lower quality of life compared to the general population. The qualification work consists of 60 pages, including 15 diagrams, 39 scientific literature sources were used, and 7 appendices are attached.
Description
Ārsta palīgs
Physician's Assistant
Veselības aprūpe
Health Care
Physician's Assistant
Veselības aprūpe
Health Care
Keywords
dzīves kvalitāte, McCune – Albright sindroms, fibrozā displāzija, quality of life, McCune - Albright syndrome, fibrous dysplasia