Browsing by Author "Knuijt, S."

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Meet and eat, an interdisciplinary group intervention for patients with myotonic dystrophy about healthy nutrition, meal preparation, and consumption: a feasibility study
Hees, S.G.M. van ; Knuijt, S. ; Dicke, H ; Groothuis, JT ; Raaphorst, J ; Satink, T. ; Cup, Edith
2020, Article / Letter to editor (Disability and Rehabilitation, vol. 42, iss. 11, (2020), pp. 1561-1568)Purpose: To develop and evaluate an interdisciplinary group intervention for patients with myotonic dystrophy regarding healthy nutrition, meal preparation, and consumption, called Meet and Eat. Materials and methods: A design-based approach was used, exploring experiences and needs of patients with myotonic dystrophy and their next of kin. This resulted in a 4-week interdisciplinary outpatient group intervention to increase awareness and change behavior. In a mixed-method feasibility study this intervention was evaluated with participants and facilitators. Results: Participants reported on social impact of difficulties with eating and drinking (speaking, swallowing, and social embarrassment) and a variety of complaints affecting meal preparation and consumption. Patients and family members expressed the wish to learn from others. After delivery of the intervention, self-reported outcome measures demonstrated improvement on eating and drinking issues in daily life. The qualitative evaluation showed increased awareness and appreciation of the following design principles: peer support, multidisciplinary approach, active involvement of patient with myotonic dystrophy and their next of kin by using personal goals and motivational interviewing. Conclusion: Participation in Meet and Eat seemed to increase insight in patients' condition and ways of management. However, a longer self-management life style program is recommended to change behavior.
Prevalence of dysarthria and dysphagia in neuromuscular diseases and an assessment tool for dysarthria in adults.
Knuijt, S.
2018, Dissertation
Myd & Eat: a multidisciplinary intervention for myotonic dystrophy regarding food intake and nutrition
Hees, S.G.M. van ; Knuijt, S. ; Dicke, H ; Satink, T. ; Raaphorst, J ; Groothuis, JT ; Cup, Edith
2017, Article / Letter to editor (Neuromuscular Disorders, vol. 27, (2017), pp. S181)
Dysphagia is present but mild in myotonic dystrophy type 2
Ensink, R. ; Swart, B.J.M. de ; Vliet, J. van ; Tieleman, A. ; Engelen, M.M. ; Knuijt, S.
2009, Article / Letter to editor (Neuromuscular Disorders, vol. 19, iss. 3, (2009), pp. 196-198)The phenotype of myotonic dystrophy type 2 (DM2) shows similarities as well as differences to that of myotonic dystrophy type 1 (DM1). Dysphagia, a predominant feature in DM1, has not yet been examined in DM2. In a recent nationwide questionnaire survey of gastrointestinal symptoms in DM2, 12 out of 29 DM2 patients reported to have difficulty in swallowing for solid food. The aim of the study was to investigate the presence of dysphagia in patients with genetically proven DM2 who reported difficulty in swallowing for solid food at the questionnaire survey. Swallowing function and fiberoptic endoscopic evaluation of swallowing (FEES) were examined by a speech therapist and otorhinolaryngologist, respectively. In DM2 patients who reported difficulty in swallowing the presence of dysphagia could be confirmed (clinically in 100%, by FEES in 88%). A correlation exists between Dysphagia Outcome and Severity Score (DOSS) and age (p = 0.05). None of the patients was underweight, and none of the patients had suffered aspiration pneumonia in the past. Dysphagia is present among DM2 patients and is more severe in older patients. However, dysphagia is generally mild, and do not lead to weight loss, or aspiration pneumonia.

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