Araştırma Makalesi
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Evaluation of Disability and Hopelessness in Multiple Sclerosis Patients

Yıl 2021, Cilt: 6 Sayı: 3, 7 - 11, 30.09.2021

Öz

Objective: Multiple sclerosis (MS) is a chronic and irreversible neurological disease. MS patients often experience hopelessness, especially for reasons such as impaired body image caused by disability, inadequate social support, prolonged treatments, activity limitations, and dependence on someone else’s care. This study was conducted to evaluate the disability and hopelessness of individuals diagnosed with MS and to determine the relationship between socio-demographic variables.
Material and Method: This cross-sectional study was conducted with 96 MS patients. The data were collected between September 1 and December 30, 2019 using a Patient Information Form that included socio-demographic characteristics, the Brief Disability Questionnaire (BDQ), and the Beck Hopelessness Scale (BHS). Kolmogorov-Smirnov, Mann-Whitney U, Kruskal-Wallis, ANOVA, and independent samples t-test were used in the evaluation of the data; corrected Bonferroni test was used to determine the differences between the groups.
Results: The mean score of BDQ was 9.64±6.67, and BHS was 9.32±2.23. Moreover, a negative correlation was detected between the scores of BDQ and BHS (r=-0.28; p<0.01). There is a statistically significant relationship between the mean score of BDQ and variables such as age, gender, education, had children, employment status, year of diagnosis, number of attacks, and the presence of other chronic diseases (p<0.05). There is no statistically significant relationship between the mean score of BHS and other variables, except the working status (p<0.05).
Conclusion: This study shows that disability poses an important problem in MS patients, and this causes patients to experience hopelessness.

Destekleyen Kurum

YOK

Teşekkür

We thank all the volunteer patients who participated in the study.

Kaynakça

  • Kneebone II, Guerrier S, Dunmore E, Jones E, Fife-Schaw C. A longitudinal examination of the hopelessness theory of depression in people who have multiple sclerosis. Behav Neurol. 2015;2015:190405.
  • Sheppard SC, Forsyth JP, Hickling EJ, Bianchi JM. A Novel application of acceptance and commitment therapy for psychosocial problems associated with Multiple Sclerosis. Results from a Half-Day Workshop Intervention. Int J MS Care. 2010;12:200-206.
  • Sinnakaruppan İ, Macdonald K, McCafferty A, Mattison P. An exploration of the relationship between perception of control, physical disability, optimism, self-efficacy and hopelessness in multiple sclerosis. Int J Rehabil Res, 2010;33:26–33.
  • Wallin MT, Culpepper WJ, Campbell JD, Nelson LM, Langer-Gould A, Marrie RA, US Multiple Sclerosis Prevalence Workgroup. The prevalence of MS in the United States: a population-based estimate using health claims data. Neurology. 2019;92(10):e1029–e1040.
  • World Health Organization. WHO global disability action plan 2014– 2021: better health for all people with disability. https://www.who.int/disabilities/actionplan/en/. Accessed January 26, 2020.
  • Türk Nöroloji Derneği. Multipl Skleroz tanı ve tedavi klavuzu 2018. https://www.noroloji.org.tr/TNDData/Uploads/files/MS_tan%C4%B1%20ve%20tedavi%202018.pdf. Accessed January 26, 2020.
  • Erbay Ö, Usta Yeşilbalkan Ö, Yüceyar N. Factors Affecting the Adherence to Disease-Modifying Therapy in Patients With Multiple Sclerosis. J Neurosci Nurs. 2018 Oct;50(5):291-297.
  • Newland P, Oliver B, Newland JM, Thomas FP. Testing Feasibility of a Mobile Application to Monitor Fatigue in People With Multiple Sclerosis. J Neurosci Nurs, 2019;51(6):331-334.
  • Türk Börü Ü, Taşdemir M, Güler N, Ayık ED, Kumaş A, Yıldırım S, et all. Prevalence of multiple sclerosis: door-to-door survey in three rural areas of coastal Black Sea regions of Turkey. Neuroepidemiology, 2011;37:231-5.
  • Karabudak R, Karampampa K, Calışkan Z; TRIBUNE Study Group. Treatment experience, burden and unmet needs (TRIBUNE) in MS study: results from Turkey. J Med Econ. 2015 Jan;18(1):69-75.
  • Turkey Ministry of Health, Hastalık İstatistikleri 2014. https:// dosyamerkez.saglik.gov.tr/Eklenti/25867,dunya-multipl-skleroz-gunu-2015-27-mayispdf.pdf?0. Accessed February 2
  • Newland P, Jensen MP, Budhathoki C, Lorenz R. Secondary health conditions in individuals with multiple sclerosis: a cross-sectional webbased survey analysis. J Neurosci Nurs, 2015;47(3):124-130.
  • Snook EM, Motl RW. Physical activity behaviors in individuals with multiple sclerosis: roles of overall and specific symptoms, and selfefficacy. J Pain Symptom Manag, 2008;36:46-53.
  • Kayes NM, McPherson KM, Schluter P, Taylor D, Leete M, Kolt GS. Exploring the facilitators and barriers to engagement in physical activity for people with multiple sclerosis. Disabil Rehabil, 2011;33(12):1043- 1053.
  • da Silva AM, Vilhena E, Lopes A, Santos E, Gonçalves MA, Pinto C, Moreira I, Mendonça D, Cavaco S. Depression and anxiety in a Portuguese MS population: associations with physical disability and severity of disease. J Neurol Sci. 2011 Jul 15;306(1-2):66-70.
  • Aşiret GD, Özdemir L, Maraşlıoğlu N. Hopelessness, depression and life satisfaction among patients with Multiple Sclerosis. Turk J Neurol. 2014;20(1):1-6. doi:10.4274/Tnd.24471
  • Tanrıverdi D, Okanlı A, Sezgin S, Ekinci M. Quality of life in patients with multiple sclerosis in Turkey: Relationship to depression and fatigue. J Neurosci Nurs, 2010;42(5):267-273.
  • Henneghan A, Stuifbergen A, Becker H, Kullberg V, Gloris N. Perceived cognitive deficits in a sample of persons living with multiple sclerosis. J Neurosci Nurs, 2017;49(5):274-279.
  • Morgante L. Hope in Multiple Sclerosis: a nursing perspective. Int J MS Care, 2000;2(2):9-15.
  • Stewart AL, Hays RD, Ware JE. The MOS Short-form general health survey. Reliability and validity in patient population. Med Care, 1988,26(7): 724-735.
  • Kaplan İ. Yarı kırsal alanda bir sağlık ocağına başvuran hastalarda ruhsal bozuklukların yeti yitimi ile ilişkisi. Türk Psikiyatri Dergisi, 1995;6:169-79.
  • Beck AT, Weissman A, Lester D, Trexler l. The measurement of pessimism: the hopelessness scale. J Consult Clin Psychol, 1974;42(6):861-865.
  • Durak A. Beck Umutsuzluk Ölçeği (BUO) geçerlilik ve güvenirlik çalışması. Türk Psikoloji Dergisi, 1994;9:1-11.
  • Liu XJ, Ye HX, Li WP, Dai R, Chen D, Jin M. Relationship between psychosocial factors and onset of multiple sclerosis. Eur Neurol, 2009;62:130-136.
  • Hakim EA, Bakheit AM, Bryant TN, Roberts MW, McIntosh-Michaelis SA, Spackman AJ. et al. The social impact of multiple sclerosis – a study of 305 patients and their relatives. Disabil Rehabil, 2000;22:288–293.
  • Glantz MJ, Chamberlain MC, Lin Q, Hsien CC, Edwards KR, VanHorn A. et al. Gender disparity in the rate of partner abandonment in patients with serious medical illness. Cancer, 2009;115(22): 5237–5242.
  • Turpin M, Leech C, Hackenberg L. Living with parental multiple sclerosis: children’s experiences and clinical implications. Can J Occup Ther, 2008;75:149–156.
  • Kouzoupis AB, Paparrigopoulos T, Soldatos M, Papadimitriou GN. The family of the multiple sclerosis patient: a psychosocial perspective. Int Rev Psychiatry, 2010;22(1):83-89.
  • Er F, Mollaoğlu M. Disability and activities of daily living in the patients with Multiple Sclerosis. J Neurol Sci [Turk], 2011;28:(2):27;190- 203.
  • Soundy A, Benson J, Dawes H, Smith B, Collett J, Meaney A. Understanding hope in patients with Multiple Sclerosis. Physiotherapy, 2012:98(4):344-350.
  • Pakenham KI, Scott T, Uccelli MM. Short Report: Evaluation of acceptance and commitment therapy training for psychologists working with people with Multiple Sclerosis. Int J MS Care, 2018;20(1):44-48.
  • Lublin FD, Baier M, Cutter G. Effect of relapses on development of residual deficit in multiple sclerosis. Neurology, 2003,61:1528-1532
  • Willingham TB, Backus D, McCully KK. Muscle dysfunction and walking impairment in women with Multiple Sclerosis. Int J MS Care, 2019;21:249-256.
  • Mutluay FK, Tekeroğlu A, Saip S. Group exercise training approach to multiple sclerosisi rehabilitation. Nobel Med, 2008;4(3):20-26.

Multipl Skleroz Hastalarında Yeti Yitimi ve Umutsuzluğun Değerlendirilmesi

Yıl 2021, Cilt: 6 Sayı: 3, 7 - 11, 30.09.2021

Öz

Amaç: Multipl skleroz (MS), kronik ve ilerleyici nörodejeneratif bir hastalıktır. Özellikle hastalar yeti yitiminin neden olduğu beden imajında bozulma, sosyal destekte yetersizlik, tedavilerin uzun sürmesi, aktivite sınırlılıkları, başkasının bakımına bağımlı olma gibi nedenlerle sıklıkla umutsuzluk yaşamaktadırlar. Bu araştırma, MS tanısı alan bireylerin yeti yitimi ve umutsuzluk durumunu değerlendirmek ve sosyo-demografik değişkenleri arasındaki ilişkiyi belirlenmek amacıyla yapıldı.
Gereç ve Yöntem: Tanımlayıcı ve kesitsel nitelikte yapılan araştırma 96 MS hastasıyla gerçekleştirildi. Veriler, 01 Eylül- 30 Aralık 2019 tarihleri arasında sosyo-demografik özellikleri içeren “Hasta Tanıtım Formu”, “Kısa Yeti Yitimi Anketi (KYA)” ve “Beck Umutsuzluk Ölçeği (BUÖ)” kullanılarak toplandı. Verilerin normallik testi için Kolmogrow-Smirnov testi yapıldı, normal dağılım göstermeyen verilerde Mann-Whitney U ve Kruskal-Wallis testleri, normal dağılımlarda ise tek yönlü ANOVA, Independent-Samples t testi, gruplar arasındaki farklılıkların belirlenmesinde düzeltilmiş Bonferroni testi uygulandı
Bulgular: Araştırmamızda KYA (9,64±6.67) ve BUÖ (9,32±2,23) aralarındaki ilişki negatif yönde anlamlı bulundu (r=-0,28, p=0,004, p<0,01). KYA puan ortalaması ile yaş, cinsiyet, eğitim durumu, çocuk sahibi olma, çalışma durumu, tanı yılı, atak geçirme sayısı, başka kronik hastalık varlığı gibi değişkenlerle arasında istatistiksel olarak anlamlı ilişki bulundu (p<0,05). BUÖ puan ortalaması ile ise çalışma durumu (p<0,05) dışında diğer değişkenler arasında ilişki istatistiksel olarak anlamsızdı.
Sonuç: Çalışmamızda, yeti yitiminin MS hastalarında önemli bir sorun oluşturduğu ve bu durum hastaların umutsuzluk yaşamasına neden olmaktadır.

Kaynakça

  • Kneebone II, Guerrier S, Dunmore E, Jones E, Fife-Schaw C. A longitudinal examination of the hopelessness theory of depression in people who have multiple sclerosis. Behav Neurol. 2015;2015:190405.
  • Sheppard SC, Forsyth JP, Hickling EJ, Bianchi JM. A Novel application of acceptance and commitment therapy for psychosocial problems associated with Multiple Sclerosis. Results from a Half-Day Workshop Intervention. Int J MS Care. 2010;12:200-206.
  • Sinnakaruppan İ, Macdonald K, McCafferty A, Mattison P. An exploration of the relationship between perception of control, physical disability, optimism, self-efficacy and hopelessness in multiple sclerosis. Int J Rehabil Res, 2010;33:26–33.
  • Wallin MT, Culpepper WJ, Campbell JD, Nelson LM, Langer-Gould A, Marrie RA, US Multiple Sclerosis Prevalence Workgroup. The prevalence of MS in the United States: a population-based estimate using health claims data. Neurology. 2019;92(10):e1029–e1040.
  • World Health Organization. WHO global disability action plan 2014– 2021: better health for all people with disability. https://www.who.int/disabilities/actionplan/en/. Accessed January 26, 2020.
  • Türk Nöroloji Derneği. Multipl Skleroz tanı ve tedavi klavuzu 2018. https://www.noroloji.org.tr/TNDData/Uploads/files/MS_tan%C4%B1%20ve%20tedavi%202018.pdf. Accessed January 26, 2020.
  • Erbay Ö, Usta Yeşilbalkan Ö, Yüceyar N. Factors Affecting the Adherence to Disease-Modifying Therapy in Patients With Multiple Sclerosis. J Neurosci Nurs. 2018 Oct;50(5):291-297.
  • Newland P, Oliver B, Newland JM, Thomas FP. Testing Feasibility of a Mobile Application to Monitor Fatigue in People With Multiple Sclerosis. J Neurosci Nurs, 2019;51(6):331-334.
  • Türk Börü Ü, Taşdemir M, Güler N, Ayık ED, Kumaş A, Yıldırım S, et all. Prevalence of multiple sclerosis: door-to-door survey in three rural areas of coastal Black Sea regions of Turkey. Neuroepidemiology, 2011;37:231-5.
  • Karabudak R, Karampampa K, Calışkan Z; TRIBUNE Study Group. Treatment experience, burden and unmet needs (TRIBUNE) in MS study: results from Turkey. J Med Econ. 2015 Jan;18(1):69-75.
  • Turkey Ministry of Health, Hastalık İstatistikleri 2014. https:// dosyamerkez.saglik.gov.tr/Eklenti/25867,dunya-multipl-skleroz-gunu-2015-27-mayispdf.pdf?0. Accessed February 2
  • Newland P, Jensen MP, Budhathoki C, Lorenz R. Secondary health conditions in individuals with multiple sclerosis: a cross-sectional webbased survey analysis. J Neurosci Nurs, 2015;47(3):124-130.
  • Snook EM, Motl RW. Physical activity behaviors in individuals with multiple sclerosis: roles of overall and specific symptoms, and selfefficacy. J Pain Symptom Manag, 2008;36:46-53.
  • Kayes NM, McPherson KM, Schluter P, Taylor D, Leete M, Kolt GS. Exploring the facilitators and barriers to engagement in physical activity for people with multiple sclerosis. Disabil Rehabil, 2011;33(12):1043- 1053.
  • da Silva AM, Vilhena E, Lopes A, Santos E, Gonçalves MA, Pinto C, Moreira I, Mendonça D, Cavaco S. Depression and anxiety in a Portuguese MS population: associations with physical disability and severity of disease. J Neurol Sci. 2011 Jul 15;306(1-2):66-70.
  • Aşiret GD, Özdemir L, Maraşlıoğlu N. Hopelessness, depression and life satisfaction among patients with Multiple Sclerosis. Turk J Neurol. 2014;20(1):1-6. doi:10.4274/Tnd.24471
  • Tanrıverdi D, Okanlı A, Sezgin S, Ekinci M. Quality of life in patients with multiple sclerosis in Turkey: Relationship to depression and fatigue. J Neurosci Nurs, 2010;42(5):267-273.
  • Henneghan A, Stuifbergen A, Becker H, Kullberg V, Gloris N. Perceived cognitive deficits in a sample of persons living with multiple sclerosis. J Neurosci Nurs, 2017;49(5):274-279.
  • Morgante L. Hope in Multiple Sclerosis: a nursing perspective. Int J MS Care, 2000;2(2):9-15.
  • Stewart AL, Hays RD, Ware JE. The MOS Short-form general health survey. Reliability and validity in patient population. Med Care, 1988,26(7): 724-735.
  • Kaplan İ. Yarı kırsal alanda bir sağlık ocağına başvuran hastalarda ruhsal bozuklukların yeti yitimi ile ilişkisi. Türk Psikiyatri Dergisi, 1995;6:169-79.
  • Beck AT, Weissman A, Lester D, Trexler l. The measurement of pessimism: the hopelessness scale. J Consult Clin Psychol, 1974;42(6):861-865.
  • Durak A. Beck Umutsuzluk Ölçeği (BUO) geçerlilik ve güvenirlik çalışması. Türk Psikoloji Dergisi, 1994;9:1-11.
  • Liu XJ, Ye HX, Li WP, Dai R, Chen D, Jin M. Relationship between psychosocial factors and onset of multiple sclerosis. Eur Neurol, 2009;62:130-136.
  • Hakim EA, Bakheit AM, Bryant TN, Roberts MW, McIntosh-Michaelis SA, Spackman AJ. et al. The social impact of multiple sclerosis – a study of 305 patients and their relatives. Disabil Rehabil, 2000;22:288–293.
  • Glantz MJ, Chamberlain MC, Lin Q, Hsien CC, Edwards KR, VanHorn A. et al. Gender disparity in the rate of partner abandonment in patients with serious medical illness. Cancer, 2009;115(22): 5237–5242.
  • Turpin M, Leech C, Hackenberg L. Living with parental multiple sclerosis: children’s experiences and clinical implications. Can J Occup Ther, 2008;75:149–156.
  • Kouzoupis AB, Paparrigopoulos T, Soldatos M, Papadimitriou GN. The family of the multiple sclerosis patient: a psychosocial perspective. Int Rev Psychiatry, 2010;22(1):83-89.
  • Er F, Mollaoğlu M. Disability and activities of daily living in the patients with Multiple Sclerosis. J Neurol Sci [Turk], 2011;28:(2):27;190- 203.
  • Soundy A, Benson J, Dawes H, Smith B, Collett J, Meaney A. Understanding hope in patients with Multiple Sclerosis. Physiotherapy, 2012:98(4):344-350.
  • Pakenham KI, Scott T, Uccelli MM. Short Report: Evaluation of acceptance and commitment therapy training for psychologists working with people with Multiple Sclerosis. Int J MS Care, 2018;20(1):44-48.
  • Lublin FD, Baier M, Cutter G. Effect of relapses on development of residual deficit in multiple sclerosis. Neurology, 2003,61:1528-1532
  • Willingham TB, Backus D, McCully KK. Muscle dysfunction and walking impairment in women with Multiple Sclerosis. Int J MS Care, 2019;21:249-256.
  • Mutluay FK, Tekeroğlu A, Saip S. Group exercise training approach to multiple sclerosisi rehabilitation. Nobel Med, 2008;4(3):20-26.
Toplam 34 adet kaynakça vardır.

Ayrıntılar

Birincil Dil İngilizce
Konular Sağlık Kurumları Yönetimi
Bölüm Araştırma Makaleleri
Yazarlar

Naile Alankaya 0000-0002-3950-2409

Nuriye Durmuş 0000-0001-6117-8513

Yayımlanma Tarihi 30 Eylül 2021
Gönderilme Tarihi 26 Şubat 2021
Yayımlandığı Sayı Yıl 2021 Cilt: 6 Sayı: 3

Kaynak Göster

APA Alankaya, N., & Durmuş, N. (2021). Evaluation of Disability and Hopelessness in Multiple Sclerosis Patients. İzmir Katip Çelebi Üniversitesi Sağlık Bilimleri Fakültesi Dergisi, 6(3), 7-11.
AMA Alankaya N, Durmuş N. Evaluation of Disability and Hopelessness in Multiple Sclerosis Patients. İKÇÜSBFD. Eylül 2021;6(3):7-11.
Chicago Alankaya, Naile, ve Nuriye Durmuş. “Evaluation of Disability and Hopelessness in Multiple Sclerosis Patients”. İzmir Katip Çelebi Üniversitesi Sağlık Bilimleri Fakültesi Dergisi 6, sy. 3 (Eylül 2021): 7-11.
EndNote Alankaya N, Durmuş N (01 Eylül 2021) Evaluation of Disability and Hopelessness in Multiple Sclerosis Patients. İzmir Katip Çelebi Üniversitesi Sağlık Bilimleri Fakültesi Dergisi 6 3 7–11.
IEEE N. Alankaya ve N. Durmuş, “Evaluation of Disability and Hopelessness in Multiple Sclerosis Patients”, İKÇÜSBFD, c. 6, sy. 3, ss. 7–11, 2021.
ISNAD Alankaya, Naile - Durmuş, Nuriye. “Evaluation of Disability and Hopelessness in Multiple Sclerosis Patients”. İzmir Katip Çelebi Üniversitesi Sağlık Bilimleri Fakültesi Dergisi 6/3 (Eylül 2021), 7-11.
JAMA Alankaya N, Durmuş N. Evaluation of Disability and Hopelessness in Multiple Sclerosis Patients. İKÇÜSBFD. 2021;6:7–11.
MLA Alankaya, Naile ve Nuriye Durmuş. “Evaluation of Disability and Hopelessness in Multiple Sclerosis Patients”. İzmir Katip Çelebi Üniversitesi Sağlık Bilimleri Fakültesi Dergisi, c. 6, sy. 3, 2021, ss. 7-11.
Vancouver Alankaya N, Durmuş N. Evaluation of Disability and Hopelessness in Multiple Sclerosis Patients. İKÇÜSBFD. 2021;6(3):7-11.