You are here

  • Home
  • Archive
  • Volume 11, Issue 8
  • Mixed methods evaluation of a self-management group programme for patients with neuromuscular disease and chronic fatigue

Article Text

Article menu
XML
Rehabilitation medicine
Original research
Mixed methods evaluation of a self-management group programme for patients with neuromuscular disease and chronic fatigue
  1. Yvonne Veenhuizen1,
  2. Ton Satink2,
  3. Maud JL Graff1,3,
  4. Alexander CH Geurts1,
  5. Jan T Groothuis1,
  6. Baziel GM van Engelen4,
  7. Maria WG Nijhuis-van der Sanden1,3,
  8. Edith HC Cup1
  1. 1Department of Rehabilitation, Donders Institute for Brain, Cognition and Behaviour, Radboud university medical center, Nijmegen, The Netherlands
  2. 2School of Occupational Therapy, HAN University of Applied Science, Nijmegen, The Netherlands
  3. 3IQ Healthcare, Research Institute for Health Sciences, Radboud university medical center, Nijmegen, The Netherlands
  4. 4Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud university medical center, Nijmegen, The Netherlands
  1. Correspondence to Dr Yvonne Veenhuizen; yvonne.veenhuizen{at}radboudumc.nl

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.

  • neuromuscular disease
  • rehabilitation medicine
  • sports medicine

Data availability statement

Data are available upon reasonable request. All data used and analysed during the current study are available from the corresponding author on reasonable request until 2026.

http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2021-048890

Statistics from Altmetric.com

    Request Permissions

    If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

    Data availability statement

    Data are available upon reasonable request. All data used and analysed during the current study are available from the corresponding author on reasonable request until 2026.

    View Full Text

    Supplementary materials

    • Supplementary Data

      This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

    Footnotes

    • Contributors YV, HCE, BGMvE and AG conceptualised the study and coordinated funding. YV undertook and monitored the study with supervision from HCE, JTG, AG, TS and MWGNvdS. YV was responsible for supervising the therapists, research assistants and recruited patients. YV and HCE led the data analysis. YV, HCE, TS and RN-vdS interpreted data. YV and HCE, TS and MWGNvdS wrote the first draft of the manuscript and were responsible for revisions. YV, HCE, TS, MG, MWGNvdS, BGMvE and AG discussed and commented on draft versions. All authors approved the final version.

    • Funding This investigator-initiated study was supported by the Netherlands Organisation for Health Research and Development (ZonMw), grant number 8370014O2, National Rehabilitation Fund (Revalidatiefonds) and Centre of Expertise ‘Sneller herstel’ (HAN). The study sponsors had no role in designing the study, patient recruitment, data collection, data analysis, data interpretation, writing of the report or submitting papers for publication. The corresponding author has full access to all study data and holds the final responsibility for the decision to submit this work for publication.

    • 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.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.