The WHEELS app was developed using the intervention mapping framework. Intervention goals were determined based on a needs assessment, after which behavior change strategies were selected to achieve these goals. These were applied in an app that was pretested on ease of use and satisfaction, followed by minor adjustments. Subsequently, a 12-week pre-post pilot study was performed to explore usability, feasibility, and effectiveness of the app. Participants received either a remote-guided or stand-alone intervention. Responses to semistructured interviews were analyzed using content analysis, and questionnaires (System Usability Score [SUS], and Usefulness, Satisfaction, and Ease) were administered to investigate usability and feasibility. Effectiveness was determined by measuring outcomes on physical activity, nutrition, sleep quality (Pittsburgh Sleep Quality Index), body composition, and other secondary outcomes pre and post intervention, and by calculating effect sizes (Hedges g).
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Background: Infantile hereditary proximal spinal muscular atrophy (SMA) type 1 is characterized by onset in the first 6 months of life and severe and progressive muscle weakness. Dysphagia is a common complication but has not been studied in detail. Objective: To study feeding and swallowing problems in infants with SMA type 1, and to explore the relation between these problems and functional motor scores. Methods: We prospectively included 16 infants with SMA type 1 between September 2016 and October 2018. Eleven infants received palliative care and five infants best supportive care in combination with nusinersen. We compiled and used an observation list with feeding related issues and observed feeding sessions during inpatient and outpatient visits. The Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND) was used as a measure of motor function. Results: All infants in the palliative care group (median onset of disease 14 days (range 1–56); median inclusion in the study 52 days (range 16–252) demonstrated symptoms of fatigue during feeding and unsafe swallowing. Symptoms were short nursing sessions (10–15 minutes), and not being able to finish the recommended feeding volumes (72%); increased frequency of feeding sessions (55%); coughing when drinking or eating (91%), and wet breathing during and after feeding (64%).Two out of five infants in the nusinersen group (median onset of disease 38 days (range 21–90); inclusion in the study at 63 days (range 3–218) were clinically pre-symptomatic at the start of treatment. The other three infants showed symptoms of fatigue and unsafe swallowing at inclusion in the study. These symptoms initially decreased after the start of the treatment, but (re)appeared in all five infants between the ages of 8 to 12 months, requiring the start tube of feeding. In the same period motor function scores significantly improved (median increase CHOP INTEND 16 points). Conclusion: Impaired feeding and swallowing remain important complications in infants with SMA type 1 after the start of nusinersen. Improvement of motor function does not imply similar gains in bulbar function.
ABSTRACT Purpose: To gain insight into determinants of physical activity in wheelchair users with spinal cord injury or lower limb amputation, from the perspective of both wheelchair users and rehabilitation professionals. Methods: Seven focus groups were conducted: five with wheelchair users (n=25) and two with rehabilitation professionals (n¼11). The transcripts were analysed using a sequential coding strategy, in which the reported determinants of physical activity were categorized using the Physical Activity for people with a Disability (PAD) model. Results: Reported personal determinants of physical activity were age, general health status, stage of life, demotivation due to difficulty burning calories, available time and energy, balance in daily life, attitude, and history of a physically active lifestyle. Reported environmental determinants were professional guidance, inconvenient exercise times, accessibility of facilities, costs, transportation difficulties, equipment difficulties, and social support. Conclusions: Important, changeable determinants of physical activity that might be influenced in future lifestyle interventions for wheelchair users are: balance in daily life leading to more time and energy to exercise, attitude towards physical activity, professional guidance, accessibility of facilities (providing information on how and where to find accessible facilities), and social support (learning how to get this)
