284
Views
0
CrossRef citations to date
0
Altmetric
Research Articles

A Cognitive Occupation-Based programme for people with MS: acceptability, feasibility, and experiences of people with multiple sclerosis

ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon
Pages 3026-3036 | Received 04 Mar 2023, Accepted 18 Jul 2023, Published online: 26 Jul 2023

References

  • Kalb R, Beier M, Benedict RH, et al. Recommendations for cognitive screening and management in multiple sclerosis care. Mult Scler. 2018;24(13):1665–1680. doi:10.1177/1352458518803785.
  • McGinley MP, Goldschmidt CH, Rae-Grant AD. Diagnosis and treatment of multiple sclerosis: a review. JAMA. 2021;325(8):765–779. doi:10.1001/jama.2020.26858.
  • Amato MP, Langdon D, Montalban X, et al. Treatment of cognitive impairment in multiple sclerosis: position paper. J Neurol. 2013;260(6):1452–1468. doi:10.1007/s00415-012-6678-0.
  • McKay KA, Manouchehrinia A, Berrigan L, et al. Long-term cognitive outcomes in patients with pediatric-onset vs adult-onset multiple sclerosis. JAMA Neurol. 2019;76(9):1028–1034. doi:10.1001/jamaneurol.2019.1546.
  • Olazarán J, Cruz I, Benito-León J, et al. Cognitive dysfunction in multiple sclerosis: methods and prevalence from the GEDMA study. Eur Neurol. 2009;61(2):87–93. doi:10.1159/000177940.
  • Langdon DW. Cognition in multiple sclerosis. Curr Opin Neurol. 2011;24(3):244–249. doi:10.1097/WCO.0b013e328346a43b.
  • Parker LS, Topcu G, De Boos D, et al. The notion of “invisibility” in people’s experiences of the symptoms of multiple sclerosis: a systematic meta-synthesis. Disabil Rehabil. 2021;43(23):3276–3290. doi:10.1080/09638288.2020.1741698.
  • Glanz BI, Dégano IR, Rintell DJ, et al. Work productivity in relapsing multiple sclerosis: associations with disability, depression, fatigue, anxiety, cognition, and health-related quality of life. Value Health. 2012;15(8):1029–1035. doi:10.1016/j.jval.2012.07.010.
  • Benito-Leon J, Morales JM, Rivera-Navarro J. Health-related quality of life and its relationship to cognitive and emotional functioning in multiple sclerosis patients. Eur J Neurol. 2002;9(5):497–e502. doi:10.1046/j.1468-1331.2002.00450.x.
  • Klein OA, Das Nair R, Ablewhite J, et al. Assessment and management of cognitive problems in people with multiple sclerosis: a national survey of clinical practice. Int J Clin Pract. 2018;73(3):e13300. doi:10.1111/ijcp.13300.
  • Mc Auliffe A, Hynes SM. The impact of cognitive functioning on daily occupations for people with multiple sclerosis: a qualitative study. Open J Occup Ther. 2019;7(3):1–12. doi:10.15453/2168-6408.1579.
  • Hynes SM, O’Keeffe F, Bane E, et al. Assessment and management of cognitive and psychosocial difficulties for people with multiple sclerosis in Ireland: a national survey of clinical practice. Int J Clin Pract. 2022;2022:3232076. doi:10.1155/2022/3232076.
  • Hynes SM, Forwell S. A cognitive occupation-based programme for people with multiple sclerosis: a new occupational therapy cognitive rehabilitation intervention. Hong Kong J Occup Ther. 2019;32(1):41–52. doi:10.1177/1569186119841263.
  • Taylor LA, Mhizha-Murira JR, Smith L, et al. Memory rehabilitation for people with multiple sclerosis. Cochrane Database Syst Rev. 2021;10(10):CD008754. doi:10.1002/14651858.CD008754.pub4.
  • Mhizha-Murira JR, Drummond A, Klein OA, et al. Reporting interventions in trials evaluating cognitive rehabilitation in people with multiple sclerosis: a systematic review. Clin Rehabil. 2018;32(2):243–254. doi:10.1177/0269215517722583.
  • Snyder CF, Aaronson NK, Choucair AK, et al. Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations. Qual Life Res. 2012;21(8):1305–1314. doi:10.1007/s11136-011-0054-x.
  • das Nair R, Lincoln NB. The effectiveness of memory rehabilitation following neurological disabilities: a qualitative inquiry of patient perspectives. Neuropsychol Rehabil. 2013;23(4):528–545. doi:10.1080/09602011.2013.792290.
  • Kerr C, Nixon A, Wild D. Assessing and demonstrating data saturation in qualitative inquiry supporting patient-reported outcomes research. Expert Rev Pharmacoecon Outcomes Res. 2010;10(3):269–281. doi:10.1586/erp.10.30.
  • Dwyer CP, Moses A, Rogers FM, et al. A qualitative investigation of reasoning behind decisions to decline participation in a research intervention: a study-within-a-trial. J Health Psychol. 2023;28(4):374–387. doi:10.1177/13591053211037736.
  • Dwyer CP, Joyce RA, Rogers F, et al. Comparing the effects of a patient-designed-and-informed participant information leaflet in comparison with a standard, researcher-designed information leaflet on recruitment, retention and understanding: a study-within-a-trial. Contemp Clin Trials Commun. 2022;28:100936. doi:10.1016/j.conctc.2022.100936.
  • Joyce R, Dwyer CP, Hynes SM. Twelve months into a feasibility trial: reflections on three experiences of public and patient involvement in research. HRB Open Res. 2021;4:11. doi:10.12688/hrbopenres.13205.2.
  • Klein OA, Drummond A, Mhizha-Murira JR, et al. Effectiveness of cognitive rehabilitation for people with multiple sclerosis: a meta-synthesis of patient perspectives. Neuropsychol Rehabil. 2019;29(4):491–512. doi:10.1080/09602011.2017.1309323.
  • Neale J, Strang J. Philosophical ruminations on measurement: methodological orientations of patient reported outcome measures (PROMS). J Ment Health. 2015;24(3):123–125. doi:10.3109/09638237.2015.1036978.
  • Finlayson M, Shevil E, Cho CC. Perceptions of cognitive symptoms among people aging with multiple sclerosis and their caregivers. Am J Occup Ther. 2009;63(2):151–159. doi:10.5014/ajot.63.2.151.
  • Mäntynen A, Rosti-Otajärvi E, Koivisto K, et al. Neuropsychological rehabilitation does not improve cognitive performance but reduces perceived cognitive deficits in patients with multiple sclerosis: a randomised, controlled, multi-centre trial. Mult Scler. 2014;20(1):99–107. doi:10.1177/1352458513494487.
  • Eldridge SM, Lancaster GA, Campbell MJ, et al. Defining feasibility and pilot studies in preparation for randomised controlled trials: development of a conceptual framework. PLoS One. 2016;11(3):e0150205. doi:10.1371/journal.pone.0150205.
  • Toye F, Williamson E, Williams MA, et al. What value can qualitative research add to quantitative research design? An example from an adolescent idiopathic scoliosis trial feasibility study. Qual Health Res. 2016;26(13):1838–1850. doi:10.1177/1049732316662446.
  • O’Cathain A, Hoddinott P, Lewin S, et al. Maximising the impact of qualitative research in feasibility studies for randomised controlled trials: guidance for researchers. Pilot Feasibility Stud. 2015;1(1):32. doi:10.1186/s40814-015-0026-y.
  • Dwyer CP, Alvarez-Iglesias A, Joyce R, et al. Evaluating the feasibility and preliminary efficacy of a Cognitive Occupation-Based programme for people with multiple Sclerosis (COB-MS): protocol for a feasibility cluster-randomised controlled trial. Trials. 2020;21(1):269. doi:10.1186/s13063-020-4179-5.
  • Dwyer CP, Alvarez-Iglesias A, Joyce R, et al. Evaluating the feasibility and preliminary efficacy of a cognitive Occupation-Based programme for people with multiple sclerosis (COB-MS): an update to the protocol for a feasibility cluster-randomised controlled trial. Trials. 2023;24(1):48. doi:10.1186/s13063-023-07080-y.
  • Malterud K, Siersma VD, Guassora AD. Sample size in qualitative interview studies: guided by information power. Qual Health Res. 2016;26(13):1753–1760. doi:10.1177/1049732315617444.
  • Mayring P. Design. In Mey G, Mruck K, editors. Handbuch qualitative Forschung in der Psychologie. Wiesbaden: VS Verlag für Sozialwissenschaften; 2010. p. 225–237.
  • Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006;3(2):77–101. doi:10.1191/1478088706qp063oa.
  • Braun V, Clarke V. Conceptual and design thinking for thematic analysis. Qual Psychol. 2022;9(1):3–26. doi:10.1037/qup0000196.
  • Grayson SE. A content analysis of stakeholder interviews on developing pathways for community-led research with big data [Doctoral dissertation]. University of Washington; 2019.
  • Braun V, Clarke V, Gray D, editors. Collecting qualitative data: a practical guide to textual, media and virtual techniques. Cambridge: Cambridge University Press; 2017.
  • Shevil E, Finlayson M. Perceptions of persons with multiple sclerosis on cognitive changes and their impact on daily life. Disabil Rehabil. 2006;28(12):779–788. doi:10.1080/09638280500387013.
  • Ghadiri F, Naser Moghadasi A, Sahraian MA. Telemedicine as a strategic intervention for cognitive rehabilitation in MS patients during COVID-19. Acta Neurol Belg. 2022;122(1):23–29. doi:10.1007/s13760-022-01875-7.
  • Barcellos LF, Horton M, Shao X, et al. A validation study for remote testing of cognitive function in multiple sclerosis. Mult Scler. 2021;27(5):795–798. doi:10.1177/1352458520937385.
  • Rogers F, Bane E, Dwyer CP, et al. Remote administration of BICAMS measures and the Trail-Making test to assess cognitive impairment in multiple sclerosis. Neuropsychol Rehabil. 2023;33(5):903–926. doi:10.1080/09602011.2022.2052324.
  • Pöttgen J, Moss-Morris R, Wendebourg JM, et al. Randomised controlled trial of a self-guided online fatigue intervention in multiple sclerosis. J Neurol Neurosurg Psychiatry. 2018;89(9):970–976. doi:10.1136/jnnp-2017-317463.
  • Kiresuk TJ, Sherman RE. Goal attainment scaling: a general method for evaluating comprehensive community mental health programs. Community Ment Health J. 1968;4(6):443–453. doi:10.1007/BF01530764.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.