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

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. A mixed method study alongside a randomised controlled trial. University hospital, rehabilitation centre and community health centre. 29 patients with a neuromuscular disease and chronic fatigue and 13 healthcare professionals participated in this mixed methods study. 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. 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. 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. 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. NCT02208687.

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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.