THE IMPACT OF SELF-CARE AGENCY ON QUALITY OF LIFE IN INDIVIDUALS WITH MULTIPLE SCLEROSIS ACCORDING TO FATIGUE LEVELS
Öz
Multiple sclerosis is a neurological disorder characterized by inflammation, demyelination, and neurodegeneration in the central nervous system. This study aimed to examine the impact of self-care agency on the quality of life in individuals with Multiple sclerosis according to their fatigue levels. A cross-sectional study was conducted with 77 participants.The mean age of the participants was 41.48±9.59 years, and 66.2% were women. The average fatigue severity was 3.86±2.4, with 49.4% of participants experiencing significant fatigue (≥4). The mean self-care agency score was 80.01±16.45. The average scores on the subscales of the Multiple Sclerosis Quality of Life Scale were 42.15±18.57 for cognitive physical health and 44.25±19.44 for cognitive mental health. Multiple regression analyses showed that self-care agency had a significant effect on both cognitive physical, and mental health. However, fatigue severity did not have a significant effect on these outcomes. Self-care agency explained a more significant portion of the variance in cognitive mental health (24.9%) than in cognitive physical health (21.8%), highlighting its more substantial role than fatigue severity. As a result of the study, it was found that approximately half of the participants experienced significant fatigue, their self-care agency was at a moderate level, and their quality of life was moderate in both cognitive physical health and cognitive mental health domains. The study revealed that as self-care agency improves, there is a parallel improvement in cognitive physical health and cognitive mental health domains, and that self-care agency can play an essential role in shaping the quality of life.
Anahtar Kelimeler
Fatigue multiple sclerosis quality of life self-care agency.
Etik Beyan
Ethics committee approval was received for this study from the Scientific Research and Publication Ethics Committee of Cukurova University (Date: 13.10.2023 Number:63/137), and the study was conducted in accordance with the principles of the Declaration of Helsinki.
Destekleyen Kurum
This study was supported by Cukurova University Scientific Research Projects Coordination Department with project number TSA-2024-16592.
Proje Numarası
TSA-2024-16592
Teşekkür
We would like to thank the Cukurova University Scientific Research Projects Coordination Department for its financial support in conducting the study.
Kaynakça
- Filippi M, Bar-Or A, Piehl F, Preziosa P, Solari A. Multiple sclerosis. Nat Rev Dis Primers. 2018;4(1):43. doi:10.1038/s41572-018-0041-4.
- Luetic GG, Menichini ML, Vrech C, et al.Clinical and demographic characteristics of male MS patients included in the national registry-RelevarEM. Does sex or phenotype make the difference in the association with poor prognosis? Mult Scler Relat Disord. 2022;58:103401. doi:10.1016/j.msard.2021.103401.
- Thompson AJ, Banwell BL, Barkhof F, et al. Diagnosis of multiple sclerosis: 2017 revisions of the McDonald criteria. Lancet Neurol. 2018;17(2):162-173. doi:10.1016/S1474-4422(17)30470-2.
- Tafti D, Ehsan M, Kathryn L. Multiple sclerosis. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; January 2024. Accessed September 1, 2024. https://www.ncbi.nlm.nih.gov/books/NBK499849/
- Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life: a conceptual model of patient outcomes. JAMA. 1995;273(1):59-65. doi:10.1001/jama.1995.03520250075037.
- Manjaly ZM, Harrison NA, Critchley HD, et al.Pathophysiological and cognitive mechanisms of fatigue in multiple sclerosis.J Neurol Neurosurg Psychiatry. 2019;90(6):642-651. doi: 10.1136/jnnp-2018-320050.
- Ayache SS, Serratrice N, Abi Lahoud GN, Chalah MA. Fatigue in multiple sclerosis: a review of the exploratory and therapeutic potential of non-ınvasive brain stimulation.Front Neurol. 2022;13:813965. doi:10.3389/fneur.2022.813965.
- Young CA, Mills R, Rog D, Sharrack B, et al.Quality of life in multiple sclerosis is dominated by fatigue, disability and self-efficacy.J Neurol Sci. 2021;426:117437. doi:10.1016/j.jns.2021.117437.
- World Health Organization. Self-care health interventions. Published 2024. Accessed September 1, 2024. https://www.who.int/news-room/fact-sheets/detail/self-care-health-interventions
- Wilski M, Brola W, Łuniewska M, Tomczak M. The perceived impact of multiple sclerosis and self-management: The mediating role of coping strategies. PLoS One. 2021;16(3):e0248135. doi:10.1371/journal.pone.0248135.
- Faul F, Erdfelder E, Lang AG, Buchner A.G*Power 3: a flexible statistical power analysis program for the social, behavioral, and biomedical sciences.Behav Res Methods. 2007;39(2):175-191. doi:10.3758/bf03193146.
- Razazian N, Kazeminia M, Moayedi H, et al. The impact of physical exercise on the fatigue symptoms in patients with multiple sclerosis: a systematic review and meta-analysis.BMC Neurol. 2020;20(1):93. doi:10.1186/s12883-020-01654-y.
- Walton C, King R, Rechtman L, et al. Rising prevalence of multiple sclerosis worldwide: Insights from the Atlas of MS, third edition.Mult Scler. 2020;26(14):1816-1821.
- Krupp LB, LaRocca NG, Muir-Nash J, Steinberg AD. The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus.Arch Neurol. 1989;46(10):1121-1123. doi:10.1001/archneur.1989.00520460115022.
- Armutlu K, Korkmaz N.C, Keser I, et al. The validity and reliability of the Fatigue Severity Scale in Turkish multiple selerosis patients. Int J Rehabil Res. 2007;30(1):81-85. doi:10.1097/MRR.0b013e3280146ec4.
- Vickrey BG, Hays RD, Harooni R, Myers LW, Ellison GW.A health-related quality of life measure for multiple sclerosis.Qual Life Res. 1995;4(3):187-206. doi:10.1007/BF02260859.
- Idiman E, Uzunel F, Ozakbas S, et al. Cross-cultural adaptation and validation of multiple sclerosis quality of life questionnaire (MSQOL-54) in a Turkish multiple sclerosis sample.J Neurol Sci. 2006;240(1-2):77-80. doi:10.1016/j.jns.2005.09.009.
- Kearney BY, Fleischer BJ. Development of an instrument to measure exercise of self-care agency. Res Nurs Health. 1979;2(1):25-34. doi:10.1002/nur.4770020105.
- Nahcivan NO. A Turkish language equivalence of the Exercise of Self-Care Agency Scale. West J Nurs Res. 2004;26(7):813-824. doi:10.1177/0193945904267599.
- Gürkan AT, Özdelikara A. The influence of self-care agency on quality of life in patients with multiple sclerosis. Turk J Neurol. 2024;30(3):149-156. doi:10.55697/tnd.2024.9.
- González IG, Rodríguez AM, Conrad R, Gregorio MÁPSG. Quality of life in adults with multiple sclerosis: a systematic review. BMJ Open. 2020;10(11):e041249. doi:10.1136/bmjopen-2020-041249.
- Barrios L, Amon R, Oldrati P, Hilty M, Holz C, Lutterotti A. Cognitive fatigability assessment test (cFAST): Development of a new instrument to assess cognitive fatigability and pilot study on its association to perceived fatigue in multiple sclerosis. Digit Health. 2022;8:20552076221117740. doi:10.1177/20552076221117740.
- Sellitto G, Ruotolo I, Ianniello A, et al.Clinical variables influencing the perception of fatigue in people with multiple sclerosis: a cross-sectional study using FSIQ-RMS.BMC Neurology. 2024;24(1):138. doi:10.1186/s12883-024-03643-x.
- National Multiple Sclerosis Society. Primary progressive MS. Published 2024. Accessed September 25, 2024. https://www.nationalmssociety.org/understanding-ms/what-is-ms/types-of-ms/primary-progressive-ms
- Han TC, Lin HS, Chen CM. Association between chronic disease self-management, health status, and quality of life in older Taiwanese adults with chronic illnesses. Healthcare (Basel). 2022;10(4):609. doi:10.3390/healthcare10040609.
- Jin Y, Lin L, Xiong M, Sun S, Wu S. Moderating effects of cognitive reserve on the relationship between brain structure and cognitive abilities in middle-aged and older adults. Neurobiol Aging. 2023;128:49-64. doi:10.1016/j.neurobiolaging.2023.04.003.
Öz
Multipl skleroz, merkezi sinir sisteminde inflamasyon, demiyelinizasyon ve nörodejenerasyonla karakterize nörolojik bir hastalıktır. Bu çalışma, Multipl sklerozlu bireylerde yorgunluk düzeylerine göre öz bakım gücünün yaşam kalitesi üzerindeki etkisini incelemeyi amaçlamıştır. Kesitsel olarak yürütülen çalışma 77 katılımcı ile gerçekleştirilmiştir.Katılımcıların yaş ortalaması 41.48±9.59 yıl olup %66.2’si kadındır. Katılımcıların yorgunluk şiddeti ortalaması 3.86±2.4 olarak bulunmuş; %49.4’ünün anlamlı düzeyde yorgunluk yaşadığı (≥4) belirlenmiştir. Öz bakım gücü ortalaması 80.01±16.45 puan olarak saptanmıştır. Multipl Skleroz Yaşam Kalitesi Ölçeği alt ölçeklerinden bilişsel fiziksel sağlık için 42.15±18.57, bilişsel zihinsel sağlık için 44.25±19.44 puan elde edilmiştir. Çoklu regresyon analizleri öz bakım gücünün, hem bilişsel fiziksel sağlık hem de bilişsel zihinsel sağlık üzerinde anlamlı bir etkisi olduğunu göstermiştir. Ancak yorgunluk şiddeti bu sonuçlar üzerinde anlamlı bir etki göstermemiştir. Öz bakım gücü, bilişsel zihinsel sağlık varyansının %24.9’unu, bilişsel fiziksel sağlık varyansının ise %21.8’ini açıklamış olup, öz bakım gücünün yorgunluk şiddetinden daha etkili olduğu belirlenmiştir. Çalışmanın sonucunda, katılımcıların yaklaşık yarısının belirgin bir yorgunluk yaşadığı, öz bakım güçlerinin orta düzeyde olduğu ve yaşam kalitelerinin bilişsel fiziksel sağlık ve bilişsel zihinsel sağlık alanlarında orta düzeyde olduğu tespit edilmiştir. Çalışmada, öz bakım gücü geliştikçe, hem bilişsel fiziksel sağlık hem de bilişsel zihinsel sağlık alanlarında buna paralel bir iyileşme olduğu, öz bakım gücünün yaşam kalitesini şekillendirmede önemli bir rol oynayabileceği ortaya konmuştur.
Anahtar Kelimeler
Etik Beyan
Bu çalışma için Çukurova Üniversitesi Bilimsel Araştırma ve Yayın Etiği Kurulu’ndan (Tarih: 13.10.2023, Sayı: 63/137) onay alınmıştır.
Destekleyen Kurum
Bu çalışma, Çukurova Üniversitesi Bilimsel Araştırma Projeler Koordinasyon Birimi tarafından TSA-2024-16592 proje numarası ile desteklenmiştir.
Proje Numarası
TSA-2024-16592
Teşekkür
Çalışmanın yürütülmesinde sağladığı finansal destek için Çukurova Üniversitesi Bilimsel Araştırma Projeler Koordinasyon Birimi’ne teşekkür ederiz.
Kaynakça
- Filippi M, Bar-Or A, Piehl F, Preziosa P, Solari A. Multiple sclerosis. Nat Rev Dis Primers. 2018;4(1):43. doi:10.1038/s41572-018-0041-4.
- Luetic GG, Menichini ML, Vrech C, et al.Clinical and demographic characteristics of male MS patients included in the national registry-RelevarEM. Does sex or phenotype make the difference in the association with poor prognosis? Mult Scler Relat Disord. 2022;58:103401. doi:10.1016/j.msard.2021.103401.
- Thompson AJ, Banwell BL, Barkhof F, et al. Diagnosis of multiple sclerosis: 2017 revisions of the McDonald criteria. Lancet Neurol. 2018;17(2):162-173. doi:10.1016/S1474-4422(17)30470-2.
- Tafti D, Ehsan M, Kathryn L. Multiple sclerosis. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; January 2024. Accessed September 1, 2024. https://www.ncbi.nlm.nih.gov/books/NBK499849/
- Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life: a conceptual model of patient outcomes. JAMA. 1995;273(1):59-65. doi:10.1001/jama.1995.03520250075037.
- Manjaly ZM, Harrison NA, Critchley HD, et al.Pathophysiological and cognitive mechanisms of fatigue in multiple sclerosis.J Neurol Neurosurg Psychiatry. 2019;90(6):642-651. doi: 10.1136/jnnp-2018-320050.
- Ayache SS, Serratrice N, Abi Lahoud GN, Chalah MA. Fatigue in multiple sclerosis: a review of the exploratory and therapeutic potential of non-ınvasive brain stimulation.Front Neurol. 2022;13:813965. doi:10.3389/fneur.2022.813965.
- Young CA, Mills R, Rog D, Sharrack B, et al.Quality of life in multiple sclerosis is dominated by fatigue, disability and self-efficacy.J Neurol Sci. 2021;426:117437. doi:10.1016/j.jns.2021.117437.
- World Health Organization. Self-care health interventions. Published 2024. Accessed September 1, 2024. https://www.who.int/news-room/fact-sheets/detail/self-care-health-interventions
- Wilski M, Brola W, Łuniewska M, Tomczak M. The perceived impact of multiple sclerosis and self-management: The mediating role of coping strategies. PLoS One. 2021;16(3):e0248135. doi:10.1371/journal.pone.0248135.
- Faul F, Erdfelder E, Lang AG, Buchner A.G*Power 3: a flexible statistical power analysis program for the social, behavioral, and biomedical sciences.Behav Res Methods. 2007;39(2):175-191. doi:10.3758/bf03193146.
- Razazian N, Kazeminia M, Moayedi H, et al. The impact of physical exercise on the fatigue symptoms in patients with multiple sclerosis: a systematic review and meta-analysis.BMC Neurol. 2020;20(1):93. doi:10.1186/s12883-020-01654-y.
- Walton C, King R, Rechtman L, et al. Rising prevalence of multiple sclerosis worldwide: Insights from the Atlas of MS, third edition.Mult Scler. 2020;26(14):1816-1821.
- Krupp LB, LaRocca NG, Muir-Nash J, Steinberg AD. The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus.Arch Neurol. 1989;46(10):1121-1123. doi:10.1001/archneur.1989.00520460115022.
- Armutlu K, Korkmaz N.C, Keser I, et al. The validity and reliability of the Fatigue Severity Scale in Turkish multiple selerosis patients. Int J Rehabil Res. 2007;30(1):81-85. doi:10.1097/MRR.0b013e3280146ec4.
- Vickrey BG, Hays RD, Harooni R, Myers LW, Ellison GW.A health-related quality of life measure for multiple sclerosis.Qual Life Res. 1995;4(3):187-206. doi:10.1007/BF02260859.
- Idiman E, Uzunel F, Ozakbas S, et al. Cross-cultural adaptation and validation of multiple sclerosis quality of life questionnaire (MSQOL-54) in a Turkish multiple sclerosis sample.J Neurol Sci. 2006;240(1-2):77-80. doi:10.1016/j.jns.2005.09.009.
- Kearney BY, Fleischer BJ. Development of an instrument to measure exercise of self-care agency. Res Nurs Health. 1979;2(1):25-34. doi:10.1002/nur.4770020105.
- Nahcivan NO. A Turkish language equivalence of the Exercise of Self-Care Agency Scale. West J Nurs Res. 2004;26(7):813-824. doi:10.1177/0193945904267599.
- Gürkan AT, Özdelikara A. The influence of self-care agency on quality of life in patients with multiple sclerosis. Turk J Neurol. 2024;30(3):149-156. doi:10.55697/tnd.2024.9.
- González IG, Rodríguez AM, Conrad R, Gregorio MÁPSG. Quality of life in adults with multiple sclerosis: a systematic review. BMJ Open. 2020;10(11):e041249. doi:10.1136/bmjopen-2020-041249.
- Barrios L, Amon R, Oldrati P, Hilty M, Holz C, Lutterotti A. Cognitive fatigability assessment test (cFAST): Development of a new instrument to assess cognitive fatigability and pilot study on its association to perceived fatigue in multiple sclerosis. Digit Health. 2022;8:20552076221117740. doi:10.1177/20552076221117740.
- Sellitto G, Ruotolo I, Ianniello A, et al.Clinical variables influencing the perception of fatigue in people with multiple sclerosis: a cross-sectional study using FSIQ-RMS.BMC Neurology. 2024;24(1):138. doi:10.1186/s12883-024-03643-x.
- National Multiple Sclerosis Society. Primary progressive MS. Published 2024. Accessed September 25, 2024. https://www.nationalmssociety.org/understanding-ms/what-is-ms/types-of-ms/primary-progressive-ms
- Han TC, Lin HS, Chen CM. Association between chronic disease self-management, health status, and quality of life in older Taiwanese adults with chronic illnesses. Healthcare (Basel). 2022;10(4):609. doi:10.3390/healthcare10040609.
- Jin Y, Lin L, Xiong M, Sun S, Wu S. Moderating effects of cognitive reserve on the relationship between brain structure and cognitive abilities in middle-aged and older adults. Neurobiol Aging. 2023;128:49-64. doi:10.1016/j.neurobiolaging.2023.04.003.
Ayrıntılar
| Birincil Dil | İngilizce |
|---|---|
| Konular | Psikiyatri, Nöroloji ve Nöromüsküler Hastalıklar, Dahili Hastalıklar Hemşireliği |
| Bölüm | Araştırma Makalesi |
| Yazarlar | |
| Proje Numarası | TSA-2024-16592 |
| Erken Görünüm Tarihi | 28 Temmuz 2025 |
| Yayımlanma Tarihi | |
| Gönderilme Tarihi | 25 Kasım 2024 |
| Kabul Tarihi | 2 Haziran 2025 |
| Yayımlandığı Sayı | Yıl 2025 Cilt: 34 Sayı: 2 |
