Publications by authors named "Saskia L S Houwen-van Opstal"
Article Synopsis
- FSHD is a genetic muscle disorder that can start in childhood, affecting about 20% of patients early on. Understanding its progression and outcomes is important for care and research.
- A study followed 20 childhood-onset FSHD patients over 5 years, assessing muscle function and disease severity with various tests. Most participants did not notice changes in their condition, despite measurable progression.
- Results showed variable disease progression, with improvements in quality of life and decreased fatigue. The study emphasizes the need for more sensitive outcome measures and larger international studies in future pediatric research.
Background: Shortening of the long finger flexors (Flexor Digitorum Profundus, FDPs) in Duchenne Muscular Dystrophy (DMD) causes reduced hand function. Until now, longitudinal studies on the natural course of the shortening of the FDPs are lacking, which impedes recommendations on timing and evaluation of preventive measures.
Objective: To investigate the longitudinal course of the FDP length during different disease stages focusing on symmetry, timing, and decline of the FDP length.
Aim: To study long-term disease course for females with early-onset dystrophinopathy, including common (female) symptoms, challenges in social participation, the need for care, and current healthcare management to support guideline development.
Method: Twelve females with early-onset dystrophinopathy were followed for a median period of more than 17 years (range 1-36).
Results: One patient died owing to end-stage cardiac failure.
Background: Progressive equinovarus deformities are common in people with Duchenne Muscular Dystrophy (DMD); they may provoke pain, pressure spots, cause problems with wearing footwear, and may lead to an unstable sitting position.
Objective: Explore indications and compare complications and long-term outcomes after soft tissue and osseous interventions in people with DMD.
Methods: Retrospective, monocenter, longitudinal study.
We aimed to investigate BMI-z course in patients with Duchenne muscular dystrophy (DMD) during transition to loss of ambulation, and to explore the contribution of caloric intake and corticosteroid use. A retrospective multicenter longitudinal study was conducted. First, analyses of characteristics at first visit were carried out.
View Article and Find Full Text PDFIntroduction/aims: As life expectancy improves for patients with Duchenne muscular dystrophy (DMD), new symptoms are likely to arise. This aims of this study are: (1) to explore the prevalence of a broad variety of symptoms in the various stages of DMD (with and without steroid use); (2) to explore the prevalence of common secondary diagnoses; and (3) to evaluate the social participation level of patients with DMD older than 16 y of age; and to explore correlations between social participation and symptoms.
Methods: A cross-sectional self-report questionnaire, including questions on functional level and health status, as well as a standardized participation scale was distributed among Dutch patients with DMD.
Background And Objective: To optimize care for patients with DMD, it is essential to know to what extent current care complies with the recommended monitoring frequencies suggested by the DMD care considerations. The objective of this study was to investigate the current care for patients with DMD in the Netherlands and to what extent the care complies with the international care considerations.
Methods: A cross-sectional questionnaire was carried out among the Dutch DMD patients and caregivers about the patients' functional and health status, visits to healthcare professionals, clinical tests and assessments, therapy, medication use and access to medical aids and devices.