Mixed methods evaluation of a self-management group programme for patients with neuromuscular disease and chronic fatigue

Yvonne Veenhuizen, Ton Satink, Maud Jl Graff, Alexander Ch Geurts, Jan T Groothuis, Baziel Gm van Engelen, Maria Wg Nijhuis-van der Sanden, Edith Hc Cup, Yvonne Veenhuizen, Ton Satink, Maud Jl Graff, Alexander Ch Geurts, Jan T Groothuis, Baziel Gm van Engelen, Maria Wg Nijhuis-van der Sanden, Edith Hc Cup

Abstract

Objective: To obtain insight into experiences of patients with a neuromuscular disease and chronic fatigue and their healthcare professionals regarding content and delivery of a multidisciplinary outpatient self-management group programme to improve social participation. This will inform future implementation.

Design: A mixed method study alongside a randomised controlled trial.

Setting: University hospital, rehabilitation centre and community health centre.

Participants: 29 patients with a neuromuscular disease and chronic fatigue and 13 healthcare professionals participated in this mixed methods study.

Intervention: Multidisciplinary group programme, called Energetic, consisted of a 4 months intervention with weekly meetings and covered four modules: (1) individually tailored aerobic exercise training; (2) education about aerobic exercise; (3) self-management training in applying energy conservation strategies and (4) implementation and relapse prevention in daily life.

Main measures: Quantitative data were collected by a questionnaire measuring patients' (n=25, all completed the programme) satisfaction with the perceived results, content and delivery of the programme. Qualitative data were collected by individual and focus group interviews to gain insight in the experiences of patients (n=18), next of kin (n=2) and healthcare professionals (n=13) with facilitators and barriers to programme implementation.

Results: Patients were satisfied with the number and length of the sessions, the different modules and the therapists. Analysis of the interviews led to five themes: (1) the combination of modules makes a complete picture, (2) the programme is physically and mentally intensive, (3) the group setting is valuable, (4) small variations in delivery occur in different settings, (5) therapists are coaches. Suggestions for programme improvement include a combination of face to face and e-health, enhancement of therapists' skills in guiding group interventions and inclusion of more booster sessions to evaluate and maintain self-management competencies.

Conclusions: The Energetic programme could be implemented in different healthcare settings and group settings, and a combination of modules proved to be a facilitator for improving self-management.

Trial registration number: NCT02208687.

Keywords: neuromuscular disease; rehabilitation medicine; sports medicine.

Conflict of interest statement

Competing interests: YV was sponsored by the Netherlands Organisation for Health Research and Development (ZonMw), National Rehabilitation Fund and Centre of Expertise ‘Sneller Herstel’ (HAN) and the Dutch FSHD Foundation. EHCC was sponsored by the Netherlands Organisation for Health Research and Development (ZonMw), National Rehabilitation Fund and Centre of Expertise ‘Sneller Herstel’ (HAN) the Dutch FSHD Foundation. She also reports grants from the Prinses Beatrix Spierfonds. BGMvE was sponsored by the Netherlands Organisation for Health Research and Development (ZonMw), National Rehabilitation Fund and Centre of Expertise ‘Sneller Herstel’ (HAN). He also reports grants from the EU Horizon 2020 research and innovation programme (Murab), the Netherlands Organisation for Scientific Research, the Netherlands Organisation for Health Research and Development, Global FSH, Prinses Beatrix Spierfonds, Stichting Spieren voor Spieren, Association Francaise contre les Myopathies, Fulcrum and the Dutch FSHD Foundation. ACHG was sponsored by the Netherlands Organisation for Health Research and Development (ZonMw), National Rehabilitation Fund and Centre of Expertise ‘Sneller Herstel’ (HAN). He also reports grants from the Netherlands Organisation for Scientific Research (ZonMw), the Netherlands Organsation for Health Research and Development, Prinses Beatrix Spierfonds, National Rehabilitation Fund, Ipsen, Merz and Otto Bock. JTG reports grants from Prinses Beatrix Spierfonds and Fulcrum Therapeutics. TS, MJLG and MWGNvdS declare that there is no conflict of interest.

© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Figures

Figure 1
Figure 1
Content of the Energetic programme delivered by physical therapists and occupational therapists. NMD, neuromuscular disease.

References

    1. Kalkman JS, Schillings ML, van der Werf SP, et al. . Experienced fatigue in facioscapulohumeral dystrophy, myotonic dystrophy, and HMSN-I. J Neurol Neurosurg Psychiatry 2005;76:1406–9. 10.1136/jnnp.2004.050005
    1. Kalkman JS, Zwarts MJ, Schillings ML, et al. . Different types of fatigue in patients with facioscapulohumeral dystrophy, myotonic dystrophy and HMSN-I. Experienced fatigue and physiological fatigue. Neurol Sci 2008;29:238–40. 10.1007/s10072-008-0949-7
    1. Lou J-S, Weiss MD, Carter GT. Assessment and management of fatigue in neuromuscular disease. Am J Hosp Palliat Care 2010;27:145–57. 10.1177/1049909109358420
    1. Veenhuizen Y, Cup EHC, Groothuis JT, et al. . Effectiveness and cost-effectiveness of a self-management group program to improve social participation in patients with neuromuscular disease and chronic fatigue: protocol of the energetic study. BMC Neurol 2015;15:58. 10.1186/s12883-015-0314-4
    1. Packer N, Sauriol A. Managing fatigue: a six-week course for energy conservation. Tucson: AZ: Therapy Skill Builders, 1995.
    1. Veenhuizen Y, Cup EHC, Jonker MA, et al. . Self-management program improves participation in patients with neuromuscular disease: a randomized controlled trial. Neurology 2019;93:e1720–31. 10.1212/WNL.0000000000008393
    1. Paterson BL. The shifting perspectives model of chronic illness. J Nurs Scholarsh 2001;33:21–6. 10.1111/j.1547-5069.2001.00021.x
    1. Holman H, Lorig K. Patient self-management: a key to effectiveness and efficiency in care of chronic disease. Public Health Rep 2004;119:239–43. 10.1016/j.phr.2004.04.002
    1. Michie S, Richardson M, Johnston M, et al. . The behavior change technique taxonomy (V1) of 93 hierarchically clustered techniques: building an international consensus for the reporting of behavior change interventions. Ann Behav Med 2013;46:81–95. 10.1007/s12160-013-9486-6
    1. Oakley A, Strange V, Bonell C, et al. . Process evaluation in randomised controlled trials of complex interventions. BMJ 2006;332:413–6. 10.1136/bmj.332.7538.413
    1. Malterud K. Qualitative research: standards, challenges, and guidelines. Lancet 2001;358:483–8. 10.1016/S0140-6736(01)05627-6
    1. Tariq S, Woodman J. Using mixed methods in health research. JRSM Short Rep 2013;4:2042533313479197. 10.1177/2042533313479197
    1. Moore GF, Audrey S, Barker M, et al. . Process evaluation of complex interventions: medical research council guidance. BMJ 2015;350:h1258. 10.1136/bmj.h1258
    1. Kallio H, Pietilä A-M, Johnson M, et al. . Systematic methodological review: developing a framework for a qualitative semi-structured interview guide. J Adv Nurs 2016;72:2954–65. 10.1111/jan.13031
    1. Yilmaz K. Comparison of quantitative and qualitative research traditions: epistemological, theoretical, and methodological differences. Eur J Educ 2013;48:311–25. 10.1111/ejed.12014
    1. Carter SM, Little M. Justifying knowledge, justifying method, taking action: epistemologies, methodologies, and methods in qualitative research. Qual Health Res 2007;17:1316–28. 10.1177/1049732307306927
    1. Cup E, Nab N, Maas D, et al. . S.P.45 energetic, a multidisciplinary self-management group program for reconditioning and managing fatigue. Neuromuscular Disorders 2012;22:896–7. 10.1016/j.nmd.2012.06.308
    1. Nierse CJ, Abma TA, Horemans AMC, et al. . Research priorities of patients with neuromuscular disease. Disabil Rehabil 2013;35:405–12. 10.3109/09638288.2012.694964
    1. Dedding C, Cardol M, Eyssen ICJM, et al. . Validity of the Canadian occupational performance measure: a client-centred outcome measurement. Clin Rehabil 2004;18:660–7. 10.1191/0269215504cr746oa
    1. Eyssen ICJM, Beelen A, Dedding C, et al. . The reproducibility of the Canadian occupational performance measure. Clin Rehabil 2005;19:888–94. 10.1191/0269215505cr883oa
    1. Liepold A, Mathiowetz V. Reliability and validity of the self-efficacy for performing energy conservation strategies assessment for persons with multiple sclerosis. Occup Ther Int 2005;12:234–49. 10.1002/oti.5
    1. Bandura A. Health promotion from the perspective of social cognitive theory. Psychol Health 1998;13:623–49. 10.1080/08870449808407422
    1. Moss-Morris R, Norton S. Aerobic exercise, cognitive behavioural therapy and energy conservation management for multiple sclerosis (MS) fatigue: are three trials better than one? Mult Scler 2017;23:1436–40. 10.1177/1352458517731159
    1. Wallace A, Pietrusz A, Dewar E, et al. . Community exercise is feasible for neuromuscular diseases and can improve aerobic capacity. Neurology 2019;92:e1773–85. 10.1212/WNL.0000000000007265
    1. Packer TL. Self-management interventions: using an occupational lens to rethink and refocus. Aust Occup Ther J 2013;60:1–2. 10.1111/1440-1630.12032
    1. Ghahari S, Packer T. Effectiveness of online and face-to-face fatigue self-management programmes for adults with neurological conditions. Disabil Rehabil 2012;34:564–73. 10.3109/09638288.2011.613518
    1. Wentzel J, van der Vaart R, Bohlmeijer ET, et al. . Mixing online and face-to-face therapy: how to benefit from blended care in mental health care. JMIR Ment Health 2016;3:e9. 10.2196/mental.4534
    1. Negrini S, Kiekens C, Bernetti A, et al. . Telemedicine from research to practice during the pandemic. "Instant paper from the field" on rehabilitation answers to the COVID-19 emergency. Eur J Phys Rehabil Med 2020;56:327–30. 10.23736/S1973-9087.20.06331-5
    1. van Dongen JJJ, Lenzen SA, van Bokhoven MA, et al. . Interprofessional collaboration regarding patients' care plans in primary care: a focus group study into influential factors. BMC Fam Pract 2016;17:58. 10.1186/s12875-016-0456-5
    1. Sport en bewegen voor iedereen (sports for everyone), 2019. Available:
    1. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004;24:105–12. 10.1016/j.nedt.2003.10.001
    1. Devers KJ. How will we know “good” qualitative research when we see it? Beginning the dialogue in health services research. Health Serv Res 1999;34:1153–88.
    1. Carter N, Bryant-Lukosius D, DiCenso A, et al. . The use of triangulation in qualitative research. Oncol Nurs Forum 2014;41:545–7. 10.1188/14.ONF.545-547

Source: PubMed

Szponzorok és közreműködők

Egészségi állapot

Kábítószer-beavatkozások

3
Iratkozz fel