Multiple Skleroz Yönetiminde Hemşire Liderliğinde Öz Düzenlemeyi Destekleyen İnteraktif Web Tabanlı Programın Geliştirilmesi ve Etkisinin Değerlendirilmesi: Randomize Kontrollü Çalışma Protokolü
Yıl 2025,
Cilt: 5 Sayı: 2, 90 - 102, 31.08.2025
Ayyüce Tuba Koçak
,
Selda Arslan
Öz
Amaç: Bu çalışma Multiple Skleroz Yönetiminde Hemşire Liderliğinde Öz Düzenlemeyi Destekleyen İnteraktif Web Tabanlı Program olan “Yönetebilirim”i Multiple Sklerozlu bireylerde öz yönetim, yorgunluk ve anksiyete düzeyleri üzerindeki etkisini değerlendirmeyi amaçlamıştır.
Yöntem: Araştırma, paralel desende randomize kontrollü bir araştırmadır. Araştırma, Nisan 2022 ile Haziran 2023 arasında X'teki bir üniversite hastanesi nöroloji kliniğinde takip edilen Multipl Sklerozlu bireyle yürütülecektir. Araştırmanın çalışma grubunu 76 Multiple Sklerozlu birey oluşturmaktadır. Müdahale grubu, sekiz hafta boyunca MS yönetiminde hemşire liderliğindeki öz düzenlemeyi destekleyen interaktif bir web tabanlı program olan “Yönetebilirim”i kullanacaktır. Araştırma verilerinin toplanmasında, Birey Tanılama Formu, Multiple Skleroz Öz-Yönetim Ölçeği, Yorgunluk Şiddet Ölçeği ve Durumluluk ve Sürekli Kaygı Ölçeği kullanılacaktır. Veriler sayı, yüzde, ortalama ve standart sapma olarak sunulacaktır. Bağımsız grupları karşılaştırmak için ki-kare analizi kullanılacaktır. Zaman ve grup arasındaki etkileşimi incelemek için karma bir ANOVA yapılacaktır. Araştırmanın etik kurul olayı X üniversitesi Hemşirelik Fakültesi Girişimsel Olmayan Etik Kurul’undan alınmıştır. Çalışma protokolü "Klinik Çalışma" veri tabanına (NCT05393765) kaydedilmiştir.
Bulgular: Araştırma sonuçları, hipotezlere dayalı olarak sunulacaktır.
Sonuç: Araştırma sonucunda, Multipl Sklerozlu bireylerin programı kullanacaklarını ve program ile ilgili olumlu geri bildirimde bulunacaklarını varsayıyoruz. Bu çalışma, Multipl Skleroz yönetimini iyileştirmek için randomize kontrollü bir hemşirelik müdahalesi olması nedeniyle önemlidir ve gelecekteki müdahale çalışmaları için bir örnek teşkil etmektedir.
Kaynakça
-
1 Akbar, N., Turpin, K., Petrin, J., Smyth, P., & Finlayson, M. (2018). A pilot mixed-methods evaluation of MS INFoRm: a self-directed fatigue management resource for individuals with Multiple Sclerosis. International Journal of Rehabilitation Research, 41(2), 114-121.
-
2 Armutlu, K., Keser, İ., Korkmaz, N., Akbıyık, D. İ., Sümbüloğlu, V., Güney, Z., & Karabudak, R. (2007). Psychometric study of Turkish version of Fatigue Impact Scale in multiple sclerosis patients. Journal of the neurological sciences, 255(1-2), 64-68.
-
3 Bandura, A. (1991). Social cognitive theory of self-regulation. Organizational behavior and human decision processes, 50(2), 248-287.
-
4 Bandura, A. (2005). The Primacy of Self-Regulation in Health Promotion. Applied Psychology: An International Review, 54, 245-254. doi:10.1111/j.1464-0597.2005.00208.x
-
5 Barabasch, A., Riemann-Lorenz, K., Kofahl, C., Scheiderbauer, J., Eklund, D., Kleiter, I., . . . Heesen, C. (2021). Impact of a multimedia website with patient experiences of multiple sclerosis (PExMS) on immunotherapy decision-making: study protocol for a pilot randomised controlled trial in a mixed-methods design. Pilot and Feasibility Studies, 7(1), 16. doi:10.1186/s40814-020-00749-0
-
6 Barello, S., Paolicelli, D., Bergamaschi, R., Cottone, S., D'Amico, A., Annibali, V., . . . Graffigna, G. (2022). A nurse-led, telephone-based patient support program for improving adherence in patients with relapsing-remitting multiple sclerosis using interferon beta-1a: Lessons from a consumer-based survey on adveva® PSP. Frontiers in Psychology, 13. doi:10.3389/fpsyg.2022.965229
-
7 Bessing, B., van der Mei, I., Taylor, B. V., Honan, C. A., Blizzard, L., & Claflin, S. B. (2022). Evaluating the impact of the Understanding Multiple Sclerosis online course on participant MS knowledge, health literacy, resilience, self-efficacy, quality of life, and MS symptom severity. Mult Scler Relat Disord, 60, 103717. doi:10.1016/j.msard.2022.103717
-
8 Bevens, W., Weiland, T., Gray, K., Jelinek, G., Neate, S., & Simpson-Yap, S. (2022). Attrition within digital health interventions for people with multiple sclerosis: Systematic review and meta-analysis. J Med Internet Res, 24(2), e27735. doi:10.2196/27735
-
9 Bishop, M., & Frain, M. (2007). Development and initial analysis of multiple sclerosis self-management scale. International Journal of MS Care, 9(2), 35-42.
-
10 Bishop, M., & Frain, M. P. (2011). The Multiple Sclerosis Self-Management Scale: Revision and psychometric analysis. Rehabil Psychol, 56(2), 150.
-
11 Busse, M., Playle, R., Latchem-Hastings, J., Button, K., Lowe, R., Barlow, C., . . . Jones, F. (2022). A web-based life-style, exercise and activity intervention for people with progressive multiple sclerosis: Results of a single-arm feasibility study. Mult Scler Relat Disord, 57, 103388. doi:10.1016/j.msard.2021.103388
-
12 Boutron I, Altman DG, Moher D, Schulz KF, Ravaud P. CONSORT statement for randomized trials of nonpharmacologic treatments: a 2017 update and a CONSORT extension for nonpharmacologic trial abstracts. Ann Intern Med. 2017;167(1):40-7.
-
13 Cederberg, K. L., Balto, J. M., & Motl, R. W. (2018). Self-Regulatory strategies as correlates of physical activity behavior in persons with Multiple Sclerosis. Arch Phys Med Rehabil, 99(5), 920-926. doi:10.1016/j.apmr.2017.12.037
-
14 Chan, A.-W., Tetzlaff, J. M., Altman, D. G., Laupacis, A., Gøtzsche, P. C., Krleža-Jerić, K., . . . Berlin, J. A. (2013). SPIRIT 2013 statement: defining standard protocol items for clinical trials. Ann of Internal Med, 158(3), 200-207.
-
15 Claflin, S. B., Gates, R., Maher, M., & Taylor, B. V. (2020). Building a successful massive open online course about multiple sclerosis: a process description. J Med Internet Res, 22(7), e16687. doi:10.2196/16687
-
16 Colombo, C., Filippini, G., Synnot, A., Hill, S., Guglielmino, R., Traversa, S., . . . Tramacere, I. (2016). Development and assessment of a website presenting evidence-based information for people with multiple sclerosis: the IN-DEEP project. BMC neurology, 16(1), 1-9. doi:10.1186/s12883-016-0552-0
-
17 Coster, S., Li, Y., & Norman, I. J. (2020). Cochrane reviews of educational and self-management interventions to guide nursing practice: A review. Int J Nurs Stud, 110, 103698. doi:10.1016/j.ijnurstu.2020.10369
-
18 Erbay, Ö., Yesilbalkan, Ö. U., Yüceyar, N., Baklan, M., Karadakovan, A., & Tekindal, M. A. (2020). Validity and reliability study of the Turkish version of Multiple Sclerosis self-management scale. J Neurosci Nurs, 52(3), 122-127.
-
19 Finlayson, M., Akbar, N., Turpin, K., & Smyth, P. (2019). A multi-site, randomized controlled trial of MS INFoRm, a fatigue self-management website for persons with Multiple Sclerosis: rationale and study protocol. BMC Neurol, 19(1), 142. doi:10.1186/s12883-019-1367-6
-
20 Gromisch, E. S., Ehde, D. M., Neto, L. O., Haselkorn, J. K., Agresta, T., Gokhale, S. S., & Turner, A. P. (2023). Using participatory action research to develop a new self-management program: Results from the design stage of Managing My MS My Way. Mult Scler Relat Disord, 74, 104720. doi:10.1016/j.msard.2023.104720
-
21 Hoving, M., Jongen, P. J., Evers, S., Edens, M. A., & Zeinstra, E. (2022). MSmonitor-plus program and video calling care (MPVC) for multidisciplinary care and self-management in multiple sclerosis: study protocol of a single-center randomized, parallel-group, open label, non-inferiority trial. BMC Neurol, 22(1), 423. doi:10.1186/s12883-022-02948-z
-
22 Jongen, P. J., Sinnige, L. G., van Geel, B. M., Verheul, F., Verhagen, W. I., van der Kruijk, R. A., . . . Visser, L. H. (2015). The interactive web-based program MSmonitor for self-management and multidisciplinary care in multiple sclerosis: concept, content, and pilot results. Patient Prefer Adherence, 9, 1741-1750. doi:10.2147/PPA.S93783. eCollection 2015
-
23 Jongen, P. J., Ter Veen, G., Lemmens, W., Donders, R., van Noort, E., & Zeinstra, E. (2020). The interactive web-based program msmonitor for self-management and multidisciplinary care in persons with Multiple Sclerosis: Quasi-experimental study of short-term effects on patient empowerment. J Med Internet Res, 22(3), e14297.
-
24 Krupp, L. B., Alvarez, L. A., LaRocca, N. G., & Scheinberg, L. C. (1988). Fatigue in Multiple Sclerosis. Arch Neurol, 45(4), 435-437. doi:10.1001/archneur.1988.00520280085020
-
25 Lau, S. C., Bhattacharjya, S., Fong, M. W., Nicol, G. E., Lenze, E. J., Baum, C., . . . Wong, A. W. (2022). Effectiveness of theory-based digital self-management interventions for improving depression, anxiety, fatigue and self-efficacy in people with neurological disorders: A systematic review and meta-analysis. J Telemed Telecare, 28(8), 547-558. doi:10.1177/1357633X2095512
-
26 Maloni, H., & Hillman, L. (2015). Multidisciplinary management of a patient with Multiple Sclerosis: Part 2. Nurses' perspective. Fed Pract, 32(Suppl 3), 17s-19s.
-
27 Mikula, P., Timkova, V., Fedicova, M., Szilasiova, J., & Nagyova, I. (2021). Self-management, self-esteem and their associations with psychological well-being in people with Multiple Sclerosis. Mult Scler Relat Disord, 53. doi:10.1016/j.msard.2021.103069
-
28 MS International Federation. (2020). Atlas of MS 3rd edition. Multiple Sclerosis International Federation. Access address: https://www.atlasofms.org/map/united-kingdom/epidemiology/number-of-people-with-ms/
-
29 Öner, N., & LeCompte, W. A. (1985). Durumluk-sürekli kaygı envanteri el kitabı: Boğaziçi Üniversitesi Yayınları.
-
30 Potemkowski, A., Brola, W., Ratajczak, A., Ratajczak, M., Zaborski, J., Jasińska, E., . . . Bartosik-Psujek, H. (2019). Internet usage by Polish patients with Multiple Sclerosis: A multicenter questionnaire study. Interact J Med Res, 8(1), e11146. doi:10.2196/11146
-
31 Pöttgen, J., Moss-Morris, R., Wendebourg, J.-M., Feddersen, L., Lau, S., Köpke, S., . . . Gold, S. M. (2018). Randomised controlled trial of a self-guided online fatigue intervention in Multiple Sclerosis. Journal of Neurology, Neurosurgery & Psychiatry, 89(9), 970. doi:10.1136/jnnp-2017-317463
-
32 Qomi, M., Rakhshan, M., Ebrahimi Monfared, M., & Khademian, Z. (2023). The effect of distance nurse-led fatigue management on fatigue, sleep quality, and self-efficacy in patients with Multiple Sclerosis: a quasi-experimental study. BMC Neurol, 23(1), 71. doi:10.1186/s12883-023-03115-8
-
33 Rahn, A. C., Köpke, S., Backhus, I., Kasper, J., Anger, K., Untiedt, B., . . . Heesen, C. (2018). Nurse-led immunotreatment DEcision Coaching In people with Multiple Sclerosis (DECIMS) - Feasibility testing, pilot randomised controlled trial and mixed methods process evaluation. Int J Nurs Stud, 78, 26-36. doi:10.1016/j.ijnurstu.2017.08.011
-
34 Rogers, M. A., Lemmen, K., Kramer, R., Mann, J., & Chopra, V. (2017). Internet-delivered health interventions that work: Systematic review of meta-analyses and evaluation of website availability. J Med Internet Res, 19(3), e90. doi:10.2196/jmir.7111
-
35 Silveira, S. L., Cederberg, K. L. J., Jeng, B., Sikes, E. M., Sandroff, B. M., Jones, C. D., & Motl, R. W. (2020). Symptom clusters and quality of life in persons with multiple sclerosis across the lifespan. Qual Life Res, 11. doi:10.1007/s11136-020-02689-x
-
36 Sippel, A., Scheiderbauer, J., Eklund, D., Arnade, S., Schmidt, S., Kleiter, I., . . . Heesen, C. (2022). Development and evaluation of a website with patients experiences of Multiple Sclerosis: a mixed methods study. BMC Neurology, 22(1), 146. doi:10.1186/s12883-022-02663-9
-
37 Spielberger, C. D., Gonzalez-Reigosa, F., Martinez-Urrutia, A., Natalicio, L. F., & Natalicio, D. S. (1971). The state-trait anxiety inventory. Revista Interamericana de Psicologia/Interamerican Journal of Psychology, 5(3 & 4).
-
38 Stuifbergen, A. K., Becker, H., Perez, F., Morrison, J., Brown, A., Kullberg, V., & Zhang, W. (2018). Computer-assisted cognitive rehabilitation in persons with multiple sclerosis: Results of a multi-site randomized controlled trial with six month follow-up. Disabil Health J, 11(3), 427-434. doi:10.1016/j.dhjo.2018.02.001
-
39 Titcomb, T. J., Sherwood, M., Ehlinger, M., Saxby, S. M., Shemirani, F., Eyck, P. T., . . . Snetselaar, L. G. (2023). Evaluation of a web-based program for the adoption of wellness behaviors to self-manage fatigue and improve quality of life among people with Multiple Sclerosis: A randomized waitlist-control trial. Mult Scler Relat Disord, 77, 104858. doi:10.1016/j.msard.2023.104858
-
40 Van Kessel, K., Wouldes, T., & Moss-Morris, R. (2016). A New Zealand pilot randomized controlled trial of a web-based interactive self-management programme (MSInvigor8) with and without email support for the treatment of multiple sclerosis fatigue. Clin Rehabil, 30(5), 454-462. doi:10.1177/0269215515584800
-
41 Wallin, M. T., Culpepper, W. J., Nichols, E., Bhutta, Z. A., Gebrehiwot, T. T., Hay, S. I., . . . Murray, C. J. L. (2019). Global, regional, and national burden of multiple sclerosis 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol, 18(3), 269-285. doi:10.1016/S1474-4422(18)30443-5
-
42 Witzig-Brändli, V., Zech, L., Lange, C., Adlbrecht, L., Gschwend, S., Mayer, H., & Kohler, M. (2023). A self-management intervention for people with multiple sclerosis: The development of a programme theory in the field of rehabilitation nursing. Evaluation and Program Planning, 99, 102302. doi:10.1016/j.evalprogplan.2023.102302
Evaluation of an Interactive Web-Based Program Advancing Nurse-Led Self-Regulation in Multiple Sclerosis Management: Study Protocol for a Randomized Controlled Trial
Yıl 2025,
Cilt: 5 Sayı: 2, 90 - 102, 31.08.2025
Ayyüce Tuba Koçak
,
Selda Arslan
Öz
Aim: This study aimed to evaluate the effect of "I Can Manage" an interactive web-based program that supports nurse-led self-regulation in Multiple Sclerosis management, on self-management, fatigue, and anxiety levels in individuals with Multiple Sclerosis.
Method: This parallel-group randomized controlled clinical trial. The research will be conducted with patients registered at the neurology clinic of a university hospital in X between April 2022 and June 2023. The study sample will comprise 76 individuals with Multiple Sclerosis. The intervention group will use “I Can Manage,” an interactive web-based program that supports nurse-led self-regulation in MS management, for eight weeks. The control group will not receive any intervention throughout the study. Data were collected using the Participant Identification Form, Multiple Sclerosis Self-Management Scale, Fatigue Severity Scale, and State-Trait Anxiety Inventory (STAI). Data will be provided in numbers, percentages, and means and standard deviations. Chi-square analysis will be used to compare independent groups. A mixed ANOVA will be conducted to examine the interaction between time and group. The University Faculty of Nursing Non-Interventional Ethics Committee approved the study. The study protocol was registered in the "Clinical Trial" database (NCT05393765).
Results: The research findings will be shared according to the hypotheses.
Conclusion: As a result, we anticipate that individuals with Multiple Sclerosis will use the program frequently and provide positive feedback about the web platform."This study has significance as a randomized controlled nursing intervention to promote Multiple Sclerosis management, ıt is an example for future intervention studies.
Etik Beyan
Etik Kurul (Numara ve tarih): 2022/33, 28.04.2022.
Teşekkür
The authors extend their sincere gratitude to the invaluable individuals with MS, nurses, and expert speakers who generously participated in the study and contributed their insights.
Kaynakça
-
1 Akbar, N., Turpin, K., Petrin, J., Smyth, P., & Finlayson, M. (2018). A pilot mixed-methods evaluation of MS INFoRm: a self-directed fatigue management resource for individuals with Multiple Sclerosis. International Journal of Rehabilitation Research, 41(2), 114-121.
-
2 Armutlu, K., Keser, İ., Korkmaz, N., Akbıyık, D. İ., Sümbüloğlu, V., Güney, Z., & Karabudak, R. (2007). Psychometric study of Turkish version of Fatigue Impact Scale in multiple sclerosis patients. Journal of the neurological sciences, 255(1-2), 64-68.
-
3 Bandura, A. (1991). Social cognitive theory of self-regulation. Organizational behavior and human decision processes, 50(2), 248-287.
-
4 Bandura, A. (2005). The Primacy of Self-Regulation in Health Promotion. Applied Psychology: An International Review, 54, 245-254. doi:10.1111/j.1464-0597.2005.00208.x
-
5 Barabasch, A., Riemann-Lorenz, K., Kofahl, C., Scheiderbauer, J., Eklund, D., Kleiter, I., . . . Heesen, C. (2021). Impact of a multimedia website with patient experiences of multiple sclerosis (PExMS) on immunotherapy decision-making: study protocol for a pilot randomised controlled trial in a mixed-methods design. Pilot and Feasibility Studies, 7(1), 16. doi:10.1186/s40814-020-00749-0
-
6 Barello, S., Paolicelli, D., Bergamaschi, R., Cottone, S., D'Amico, A., Annibali, V., . . . Graffigna, G. (2022). A nurse-led, telephone-based patient support program for improving adherence in patients with relapsing-remitting multiple sclerosis using interferon beta-1a: Lessons from a consumer-based survey on adveva® PSP. Frontiers in Psychology, 13. doi:10.3389/fpsyg.2022.965229
-
7 Bessing, B., van der Mei, I., Taylor, B. V., Honan, C. A., Blizzard, L., & Claflin, S. B. (2022). Evaluating the impact of the Understanding Multiple Sclerosis online course on participant MS knowledge, health literacy, resilience, self-efficacy, quality of life, and MS symptom severity. Mult Scler Relat Disord, 60, 103717. doi:10.1016/j.msard.2022.103717
-
8 Bevens, W., Weiland, T., Gray, K., Jelinek, G., Neate, S., & Simpson-Yap, S. (2022). Attrition within digital health interventions for people with multiple sclerosis: Systematic review and meta-analysis. J Med Internet Res, 24(2), e27735. doi:10.2196/27735
-
9 Bishop, M., & Frain, M. (2007). Development and initial analysis of multiple sclerosis self-management scale. International Journal of MS Care, 9(2), 35-42.
-
10 Bishop, M., & Frain, M. P. (2011). The Multiple Sclerosis Self-Management Scale: Revision and psychometric analysis. Rehabil Psychol, 56(2), 150.
-
11 Busse, M., Playle, R., Latchem-Hastings, J., Button, K., Lowe, R., Barlow, C., . . . Jones, F. (2022). A web-based life-style, exercise and activity intervention for people with progressive multiple sclerosis: Results of a single-arm feasibility study. Mult Scler Relat Disord, 57, 103388. doi:10.1016/j.msard.2021.103388
-
12 Boutron I, Altman DG, Moher D, Schulz KF, Ravaud P. CONSORT statement for randomized trials of nonpharmacologic treatments: a 2017 update and a CONSORT extension for nonpharmacologic trial abstracts. Ann Intern Med. 2017;167(1):40-7.
-
13 Cederberg, K. L., Balto, J. M., & Motl, R. W. (2018). Self-Regulatory strategies as correlates of physical activity behavior in persons with Multiple Sclerosis. Arch Phys Med Rehabil, 99(5), 920-926. doi:10.1016/j.apmr.2017.12.037
-
14 Chan, A.-W., Tetzlaff, J. M., Altman, D. G., Laupacis, A., Gøtzsche, P. C., Krleža-Jerić, K., . . . Berlin, J. A. (2013). SPIRIT 2013 statement: defining standard protocol items for clinical trials. Ann of Internal Med, 158(3), 200-207.
-
15 Claflin, S. B., Gates, R., Maher, M., & Taylor, B. V. (2020). Building a successful massive open online course about multiple sclerosis: a process description. J Med Internet Res, 22(7), e16687. doi:10.2196/16687
-
16 Colombo, C., Filippini, G., Synnot, A., Hill, S., Guglielmino, R., Traversa, S., . . . Tramacere, I. (2016). Development and assessment of a website presenting evidence-based information for people with multiple sclerosis: the IN-DEEP project. BMC neurology, 16(1), 1-9. doi:10.1186/s12883-016-0552-0
-
17 Coster, S., Li, Y., & Norman, I. J. (2020). Cochrane reviews of educational and self-management interventions to guide nursing practice: A review. Int J Nurs Stud, 110, 103698. doi:10.1016/j.ijnurstu.2020.10369
-
18 Erbay, Ö., Yesilbalkan, Ö. U., Yüceyar, N., Baklan, M., Karadakovan, A., & Tekindal, M. A. (2020). Validity and reliability study of the Turkish version of Multiple Sclerosis self-management scale. J Neurosci Nurs, 52(3), 122-127.
-
19 Finlayson, M., Akbar, N., Turpin, K., & Smyth, P. (2019). A multi-site, randomized controlled trial of MS INFoRm, a fatigue self-management website for persons with Multiple Sclerosis: rationale and study protocol. BMC Neurol, 19(1), 142. doi:10.1186/s12883-019-1367-6
-
20 Gromisch, E. S., Ehde, D. M., Neto, L. O., Haselkorn, J. K., Agresta, T., Gokhale, S. S., & Turner, A. P. (2023). Using participatory action research to develop a new self-management program: Results from the design stage of Managing My MS My Way. Mult Scler Relat Disord, 74, 104720. doi:10.1016/j.msard.2023.104720
-
21 Hoving, M., Jongen, P. J., Evers, S., Edens, M. A., & Zeinstra, E. (2022). MSmonitor-plus program and video calling care (MPVC) for multidisciplinary care and self-management in multiple sclerosis: study protocol of a single-center randomized, parallel-group, open label, non-inferiority trial. BMC Neurol, 22(1), 423. doi:10.1186/s12883-022-02948-z
-
22 Jongen, P. J., Sinnige, L. G., van Geel, B. M., Verheul, F., Verhagen, W. I., van der Kruijk, R. A., . . . Visser, L. H. (2015). The interactive web-based program MSmonitor for self-management and multidisciplinary care in multiple sclerosis: concept, content, and pilot results. Patient Prefer Adherence, 9, 1741-1750. doi:10.2147/PPA.S93783. eCollection 2015
-
23 Jongen, P. J., Ter Veen, G., Lemmens, W., Donders, R., van Noort, E., & Zeinstra, E. (2020). The interactive web-based program msmonitor for self-management and multidisciplinary care in persons with Multiple Sclerosis: Quasi-experimental study of short-term effects on patient empowerment. J Med Internet Res, 22(3), e14297.
-
24 Krupp, L. B., Alvarez, L. A., LaRocca, N. G., & Scheinberg, L. C. (1988). Fatigue in Multiple Sclerosis. Arch Neurol, 45(4), 435-437. doi:10.1001/archneur.1988.00520280085020
-
25 Lau, S. C., Bhattacharjya, S., Fong, M. W., Nicol, G. E., Lenze, E. J., Baum, C., . . . Wong, A. W. (2022). Effectiveness of theory-based digital self-management interventions for improving depression, anxiety, fatigue and self-efficacy in people with neurological disorders: A systematic review and meta-analysis. J Telemed Telecare, 28(8), 547-558. doi:10.1177/1357633X2095512
-
26 Maloni, H., & Hillman, L. (2015). Multidisciplinary management of a patient with Multiple Sclerosis: Part 2. Nurses' perspective. Fed Pract, 32(Suppl 3), 17s-19s.
-
27 Mikula, P., Timkova, V., Fedicova, M., Szilasiova, J., & Nagyova, I. (2021). Self-management, self-esteem and their associations with psychological well-being in people with Multiple Sclerosis. Mult Scler Relat Disord, 53. doi:10.1016/j.msard.2021.103069
-
28 MS International Federation. (2020). Atlas of MS 3rd edition. Multiple Sclerosis International Federation. Access address: https://www.atlasofms.org/map/united-kingdom/epidemiology/number-of-people-with-ms/
-
29 Öner, N., & LeCompte, W. A. (1985). Durumluk-sürekli kaygı envanteri el kitabı: Boğaziçi Üniversitesi Yayınları.
-
30 Potemkowski, A., Brola, W., Ratajczak, A., Ratajczak, M., Zaborski, J., Jasińska, E., . . . Bartosik-Psujek, H. (2019). Internet usage by Polish patients with Multiple Sclerosis: A multicenter questionnaire study. Interact J Med Res, 8(1), e11146. doi:10.2196/11146
-
31 Pöttgen, J., Moss-Morris, R., Wendebourg, J.-M., Feddersen, L., Lau, S., Köpke, S., . . . Gold, S. M. (2018). Randomised controlled trial of a self-guided online fatigue intervention in Multiple Sclerosis. Journal of Neurology, Neurosurgery & Psychiatry, 89(9), 970. doi:10.1136/jnnp-2017-317463
-
32 Qomi, M., Rakhshan, M., Ebrahimi Monfared, M., & Khademian, Z. (2023). The effect of distance nurse-led fatigue management on fatigue, sleep quality, and self-efficacy in patients with Multiple Sclerosis: a quasi-experimental study. BMC Neurol, 23(1), 71. doi:10.1186/s12883-023-03115-8
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33 Rahn, A. C., Köpke, S., Backhus, I., Kasper, J., Anger, K., Untiedt, B., . . . Heesen, C. (2018). Nurse-led immunotreatment DEcision Coaching In people with Multiple Sclerosis (DECIMS) - Feasibility testing, pilot randomised controlled trial and mixed methods process evaluation. Int J Nurs Stud, 78, 26-36. doi:10.1016/j.ijnurstu.2017.08.011
-
34 Rogers, M. A., Lemmen, K., Kramer, R., Mann, J., & Chopra, V. (2017). Internet-delivered health interventions that work: Systematic review of meta-analyses and evaluation of website availability. J Med Internet Res, 19(3), e90. doi:10.2196/jmir.7111
-
35 Silveira, S. L., Cederberg, K. L. J., Jeng, B., Sikes, E. M., Sandroff, B. M., Jones, C. D., & Motl, R. W. (2020). Symptom clusters and quality of life in persons with multiple sclerosis across the lifespan. Qual Life Res, 11. doi:10.1007/s11136-020-02689-x
-
36 Sippel, A., Scheiderbauer, J., Eklund, D., Arnade, S., Schmidt, S., Kleiter, I., . . . Heesen, C. (2022). Development and evaluation of a website with patients experiences of Multiple Sclerosis: a mixed methods study. BMC Neurology, 22(1), 146. doi:10.1186/s12883-022-02663-9
-
37 Spielberger, C. D., Gonzalez-Reigosa, F., Martinez-Urrutia, A., Natalicio, L. F., & Natalicio, D. S. (1971). The state-trait anxiety inventory. Revista Interamericana de Psicologia/Interamerican Journal of Psychology, 5(3 & 4).
-
38 Stuifbergen, A. K., Becker, H., Perez, F., Morrison, J., Brown, A., Kullberg, V., & Zhang, W. (2018). Computer-assisted cognitive rehabilitation in persons with multiple sclerosis: Results of a multi-site randomized controlled trial with six month follow-up. Disabil Health J, 11(3), 427-434. doi:10.1016/j.dhjo.2018.02.001
-
39 Titcomb, T. J., Sherwood, M., Ehlinger, M., Saxby, S. M., Shemirani, F., Eyck, P. T., . . . Snetselaar, L. G. (2023). Evaluation of a web-based program for the adoption of wellness behaviors to self-manage fatigue and improve quality of life among people with Multiple Sclerosis: A randomized waitlist-control trial. Mult Scler Relat Disord, 77, 104858. doi:10.1016/j.msard.2023.104858
-
40 Van Kessel, K., Wouldes, T., & Moss-Morris, R. (2016). A New Zealand pilot randomized controlled trial of a web-based interactive self-management programme (MSInvigor8) with and without email support for the treatment of multiple sclerosis fatigue. Clin Rehabil, 30(5), 454-462. doi:10.1177/0269215515584800
-
41 Wallin, M. T., Culpepper, W. J., Nichols, E., Bhutta, Z. A., Gebrehiwot, T. T., Hay, S. I., . . . Murray, C. J. L. (2019). Global, regional, and national burden of multiple sclerosis 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol, 18(3), 269-285. doi:10.1016/S1474-4422(18)30443-5
-
42 Witzig-Brändli, V., Zech, L., Lange, C., Adlbrecht, L., Gschwend, S., Mayer, H., & Kohler, M. (2023). A self-management intervention for people with multiple sclerosis: The development of a programme theory in the field of rehabilitation nursing. Evaluation and Program Planning, 99, 102302. doi:10.1016/j.evalprogplan.2023.102302