Experiences of Persons with Multiple Sclerosis with Rehabilitation-a Qualitative Interview Study

Overview

Journal BMC Health Serv Res

Publisher Biomed Central

Specialty Health Services

Date 2022 Jun 11

PMID 35690766

Authors

Donya Ghaidar

Anna Sippel

Karin Riemann-Lorenz

Christopher Kofahl

Rebecca Morrison

Ingo Kleiter

Stephan Schmidt

Christian Dettmers

Holger Schulz

Christoph Heesen

Affiliations

Soon will be listed here.

Abstract

Background: Managing multiple sclerosis (MS) includes different treatment approaches. Rehabilitation is a key strategy in MS for improving functioning, activity and participation. As part of a larger study on overall patient experiences with different treatment approaches, this study aims to give an overview of different patients' experiences and perspectives on inpatient rehabilitation in MS.

Methods: We conducted problem-centered interviews in 50 persons with MS in Germany, of whom most had relapsing-remitting MS. We used the maximum variation sampling method during recruitment. Data were analyzed thematically.

Results: As a result of the analysis, three major themes were identified: 1) factors contributing to the decision-making concerning rehabilitation, 2) experience with the rehabilitation setting, 3) benefits of rehabilitation treatments. The treating physicians' attitude had a major impact on the decision to either opt for rehabilitation or not. Setting goals prior to rehabilitation was given a high priority. Exchanging experiences with other persons with MS presented a major benefit from rehabilitation while for some being separated from regular daily life resulted in a more ambiguous attitude ranging from appreciation of escaping daily hassles to substantial behavioral change management.

Conclusion: Patients reported various experiences in the process of decision-making with regard to rehabilitation. Physicians´ advice, goal setting and the selection of the most suitable rehabilitation clinic were considered most relevant.

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References

Mohr D, Cox D . Multiple sclerosis: empirical literature for the clinical health psychologist. J Clin Psychol. 2001; 57(4):479-99. DOI: 10.1002/jclp.1042. View

McCabe M, Ebacioni K, Simmons R, McDonald E, Melton L . Unmet education, psychological and peer support needs of people with multiple sclerosis. J Psychosom Res. 2014; 78(1):82-7. DOI: 10.1016/j.jpsychores.2014.05.010. View

Playford E . Beyond standard rehabilitation programmes: Working with people with MS for adequate goal setting and rehabilitation treatment evaluation. Mult Scler. 2019; 25(10):1394-1401. DOI: 10.1177/1352458519864930. View

Thompson A, Baranzini S, Geurts J, Hemmer B, Ciccarelli O . Multiple sclerosis. Lancet. 2018; 391(10130):1622-1636. DOI: 10.1016/S0140-6736(18)30481-1. View

Helland C, Holmoy T, Gulbrandsen P . Barriers and Facilitators Related to Rehabilitation Stays in Multiple Sclerosis: A Qualitative Study. Int J MS Care. 2015; 17(3):122-9. PMC: 4455864. DOI: 10.7224/1537-2073.2014-007. View

Entwistle V, France E, Wyke S, Jepson R, Hunt K, Ziebland S . How information about other people's personal experiences can help with healthcare decision-making: a qualitative study. Patient Educ Couns. 2011; 85(3):e291-8. DOI: 10.1016/j.pec.2011.05.014. View

Giovannetti A, Barabasch A, Giordano A, Quintas R, Barello S, Graffigna G . Construction of a User-Led Resource for People Transitioning to Secondary Progressive Multiple Sclerosis: Results of an International Nominal Group Study. Front Neurol. 2020; 11:798. PMC: 7461961. DOI: 10.3389/fneur.2020.00798. View

Landoni M, Giordano M, Guidetti G . Group psychotherapy experiences for people with multiple sclerosis and psychological support for families. J Neurovirol. 2000; 6 Suppl 2:S168-71. View

Coenen M, Cieza A, Freeman J, Khan F, Miller D, Weise A . The development of ICF Core Sets for multiple sclerosis: results of the International Consensus Conference. J Neurol. 2011; 258(8):1477-88. DOI: 10.1007/s00415-011-5963-7. View

10.

Ziebland S, McPherson A . Making sense of qualitative data analysis: an introduction with illustrations from DIPEx (personal experiences of health and illness). Med Educ. 2006; 40(5):405-14. DOI: 10.1111/j.1365-2929.2006.02467.x. View

11.

Breuning M, Lucius-Hoene G, Burbaum C, Himmel W, Bengel J . [Patient experiences and patient centeredness : The website project DIPEx Germany]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2017; 60(4):453-461. DOI: 10.1007/s00103-017-2524-y. View

12.

Ellenberger D, Flachenecker P, Haas J, Hellwig K, Paul F, Stahmann A . Is benign MS really benign? What a meaningful classification beyond the EDSS must take into consideration. Mult Scler Relat Disord. 2020; 46:102485. DOI: 10.1016/j.msard.2020.102485. View

13.

Dekker J, de Groot V, Ter Steeg A, Vloothuis J, Holla J, Collette E . Setting meaningful goals in rehabilitation: rationale and practical tool. Clin Rehabil. 2019; 34(1):3-12. DOI: 10.1177/0269215519876299. View

14.

Giesler J, Klindtworth K, Nebe A, Glattacker M . [Medical Rehabilitation in MS: Barriers to and Facilitators of its Utilization from the Patients' Perspective]. Rehabilitation (Stuttg). 2019; 59(2):112-119. DOI: 10.1055/a-0965-0977. View

15.

Barabasch A, Riemann-Lorenz K, Kofahl C, Scheiderbauer J, Eklund D, Kleiter I . 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 Feasibility Stud. 2021; 7(1):16. PMC: 7788927. DOI: 10.1186/s40814-020-00749-0. View

16.

Soelberg Sorensen P, Sellebjerg F, Hartung H, Montalban X, Comi G, Tintore M . The apparently milder course of multiple sclerosis: changes in the diagnostic criteria, therapy and natural history. Brain. 2020; 143(9):2637-2652. DOI: 10.1093/brain/awaa145. View

17.

OConnor A, Drake E, Wells G, Tugwell P, Laupacis A, Elmslie T . A survey of the decision-making needs of Canadians faced with complex health decisions. Health Expect. 2003; 6(2):97-109. PMC: 5060179. DOI: 10.1046/j.1369-6513.2003.00215.x. View

18.

Pottgen J, Friede T, Lau S, Gold S, Letsch C, Bender G . Managing neuropsychological impairment in multiple sclerosis - Controlled study on a standardized metacognitive intervention (MaTiMS). Mult Scler Relat Disord. 2022; 59:103687. DOI: 10.1016/j.msard.2022.103687. View

19.

Levack W, Weatherall M, Hay-Smith E, Dean S, McPherson K, Siegert R . Goal setting and strategies to enhance goal pursuit for adults with acquired disability participating in rehabilitation. Cochrane Database Syst Rev. 2015; (7):CD009727. PMC: 8941379. DOI: 10.1002/14651858.CD009727.pub2. View

20.

Tong A, Sainsbury P, Craig J . Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007; 19(6):349-57. DOI: 10.1093/intqhc/mzm042. View