Participation and the Role of Neuropsychological Functioning in Myotonic Dystrophy Type 1

Heugten, Caroline van; Meuleman, Susan; Hellebrekers, Danique M. J.; Reenen, Esther Kruitwagen-van; Visser-Meily, Johanna M A

doi:10.3233/jnd-170246

Cited by 20 publications

(10 citation statements)

References 35 publications

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“…Our theoretical models identified apathy as a potential predictor of participation. However, as it was not recorded at baseline in our study, we may have missed a significant predictor of participation restriction considering the work of Van Heugten et al, who found a significant association between apathy and participation restriction [49]. Participation restriction in the current study has been predicted by slightly different variables compared to health-related quality of life, an associated concept.…”

Section: Discussionmentioning

confidence: 49%

Predictors of participation restriction over a 9-year period in adults with myotonic dystrophy type 1

Raymond

Levasseur

Gallais

et al. 2020

Disability and Rehabilitation

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Section: Discussionmentioning

confidence: 49%

Predictors of participation restriction over a 9-year period in adults with myotonic dystrophy type 1

Raymond

Levasseur

Gallais

et al. 2020

Disability and Rehabilitation

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“…For example, Kierkegaard et al found dependence in “personal activities” (eg feeding, bathing, dressing, toileting and transfer) and “instrumental activities” (eg shopping, cleaning, cooking and transportation) in 16% and 39% of patients, respectively, and participation restrictions in “social and lifestyle activities” (eg domestic chores, work/leisure and outdoor activities) in 52% of patients. Van Heugten et al found most restrictions concerning sports/leisure activities and activities outside the home environment, but also housekeeping based on data recorded via the Utrecht Scale for Evaluation of Rehabilitation‐Participation. Similar findings were described by Gagnon et al, who found most impact in the “Recreation,” “Mobility” and “Housing” domains (in addition to “Employment”) based on the Assessment of Life Habits (LIFE‐H) tool in a sample of Canadian adults with DM1.…”

Section: Discussionmentioning

confidence: 99%

Activities of daily living in myotonic dystrophy type 1

et al. 2020

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Objectives The objective of this cross‐sectional, observational study was to investigate performance of activities of daily living in patients with myotonic dystrophy type 1 (DM1). Materials and Methods Adults with genetically confirmed DM1 were recruited from Newcastle University (Newcastle upon Tyne, UK) and University College London Hospitals NHS Foundation Trust (London, UK). Data on activities of daily living were recorded through the DM1‐ActivC (scale scores range between 0 and 100, where a higher/lower score indicates a higher/lower ability). Results Our sample comprised 192 patients with DM1 (mean age: 46 years; 51% female). Patients reported most difficulties with running, carrying and putting down heavy objects, and standing on one leg, and least difficulties with eating soup, washing upper body, and taking a shower. Irrespective of the disease duration (mean: 20 years), most patients were able to perform basic and instrumental activities of daily living (eg personal hygiene and grooming, showering, eating, cleaning and shopping), with the exception of functional mobility/transfer tasks (eg walking uphill and running). The mean DM1‐ActivC total score was estimated at 71 (95% CI: 68‐74). Estimated progenitor cytosine‐thymine‐guanine repeat length and age explained 27% of the variance in DM1‐ActivC total scores (P < .001). Conclusions We show that DM1 impairs performance of activities of daily living, in particular those requiring a high degree of muscle strength, stability and coordination. Yet, across the evolution of the disease, the majority of patients will still be able to independently perform most basic and instrumental activities of daily living.

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“…Furthermore, the USER-P has hardly been used in partners. 33 The psychometric properties of the USER-P in partners of patients with stroke require further investigation.…”

Section: Study Limitationsmentioning

confidence: 99%

Participation Restrictions and Satisfaction With Participation in Partners of Patients With Stroke

Cox

Schepers

Heugten

et al. 2020

Archives of Physical Medicine and Rehabilitation

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To investigate participation restrictions and satisfaction with participation in partners of patients with stroke. Design: Cross-sectional study. Setting: Five rehabilitation centers and 3 hospitals in The Netherlands. Participants: A consecutive sample of 54 partners of patients with stroke. The patients were participating in a multicenter randomized controlled trial. Interventions: Not applicable. Main Outcome Measures: Participation restrictions as a result of the patient's stroke and satisfaction with participation measured with the Utrecht Scale for Evaluation of RehabilitationeParticipation. Results: The number of participation restrictions differed between partners of patients with stroke. The median number of participation restrictions experienced was 2 for the 11 activities assessed. Most participation restrictions were reported regarding paid work, unpaid work, or education, relationship with partner (ie, patient), and going out. Partners were least satisfied regarding going out, sports or other physical exercise, and day trips and other outdoor activities. The participation restrictions and satisfaction with participation were significantly correlated (rZ0.65; P<.001), although this relation between participation restrictions and satisfaction with participation differed for the various activities. Differences between satisfied partners with participation restrictions and dissatisfied partners concerned anxiety (UZ93.0; PZ.026), depression (UZ81.5, PZ.010), and the number of restrictions experienced (UZ50.0; P<.001). Conclusions: There is great variety in restrictions experienced by partners regarding different activities and in their satisfaction with these activities. Specific assessment is therefore important when supporting partners of patients with stroke.

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Participation and the Role of Neuropsychological Functioning in Myotonic Dystrophy Type 1

Cited by 20 publications

References 35 publications

Predictors of participation restriction over a 9-year period in adults with myotonic dystrophy type 1

Predictors of participation restriction over a 9-year period in adults with myotonic dystrophy type 1

Activities of daily living in myotonic dystrophy type 1

Participation Restrictions and Satisfaction With Participation in Partners of Patients With Stroke

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