Natural variability of daily physical activity measured by accelerometry in children with a mitochondrial disease

Vries, Pascal R. de; Janssen, Mariska M. H. P.; Spaans, Edwin; Groot, I. de; Janssen, Anjo J.W.M.; Smeitink, Jan A.M.; Koene, Saskia

doi:10.1016/j.mito.2019.04.005

Cited by 8 publications

(8 citation statements)

References 20 publications

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“…Another limitation is that we measured a relatively short time period because of a concern of the burden to the boys/adolescents of filling out diaries and wearing sensors for longer periods. We also did not correct for the period during which the sensors were worn (season, weekdays, or weekend), although a recent study showed an effect of season on the activity pattern of children with neuromuscular diseases . A third limitation is that we did not select participants with specific mutations because as our research questions where more general, assessing the feasibility and validity of the method.…”

Section: Discussionmentioning

confidence: 99%

“…We also did not correct for the period during which the sensors were worn (season, weekdays, or weekend), although a recent study showed an effect of season on the activity pattern of children with neuromuscular diseases. 34 A third limitation is that we did not select participants with specific mutations because as our research questions where more general, assessing the feasibility and validity of the method. A final limitation is that no data were available for one patient, and that data for two other patients were available for only 1 day because the accelerometers stopped functioning.…”

Section: Discussionmentioning

confidence: 99%

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Monitoring daily physical activity of upper extremity in young and adolescent boys with Duchenne muscular dystrophy: A pilot study

Geest¹,

Essers

Bergsma

et al. 2019

Muscle and Nerve

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Introduction Accelerometry of the upper extremity (UE) potentially provides information on the extent of activities in daily life in patients with Duchenne muscular dystrophy (DMD). The objective of this study is to evaluate the validity of home measurements of UE accelerometry. Methods This was a cross‐sectional study in 16 patients with DMD (aged 7‐17 years). Patients were monitored for 1 to 3 days with two accelerometers on the UE and one accelerometer on the wheelchair. Results The mean intensity of activity and the mean frequency of transfers of arm elevation from low to middle were approximately twofold higher in patients with a Brooke scale score of 1 or 2 than in patients with a Brooke scale score of 3 or 4. Correlations with the Performance of Upper Limb scale score were high for intensity and for the total frequency of arm elevations per hour. Discussion Intensity, percentage of time in middle orientation, and frequency of transfers of the upper arm correlated well with functional measurements.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Monitoring daily physical activity of upper extremity in young and adolescent boys with Duchenne muscular dystrophy: A pilot study

Geest¹,

Essers

Bergsma

et al. 2019

Muscle and Nerve

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“…The impact of the disabilities on everyday activities is illustrated by a study by Martens et al (2014), who found that children with mitochondrial disorders are less physically active and engaged in vigorous activities compared to healthy peers. Furthermore, the activity level of children with mitochondrial disorders as measured with an accelerometer varies from nearly normal to severely impaired (de Vries et al 2019). The most burdensome complaints on the levels of activity and participation, reported by children and their parents, are learning to write and calculate and engaging in activities at school, around the neighbourhood and in the community (Koene et al 2013).…”

Section: Introductionmentioning

confidence: 99%

The Perspectives and Values of Children with a Mitochondrial Disorder with Regard to Everyday Activities

et al. 2019

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Engagement for children with mitochondrial disorder is not self evident. To develop personalised and value-based care for this population, we require knowledge about their perspectives and values with regards to everyday activities. To gain insight into children's perspective on activities by (1) asking what activities they perform, (2) how they perform them, (3) how they experience these activities and (4) their wants and needs. Seven semistructured content analyzed interviews. The interviews identified a variety of activities. The overarching themes on wants/needs were 'I want to meet up with others whenever I want to','I want to be able to…', 'I don't want to…' and 'Dream'. These themes were interconnected to thirteen other themes that captured how children experience and perform activities, for example, 'Because I can decide by myself', 'Because I can do it on my own' and 'It is more fun to do things with other people'. The activities children performed represent regular childhood activities. The identified themes fit with the three aspects of the self-determination theory: autonomy, competence and relatedness. This study exposed the broad child perspective and should provide better understanding of children's choices in their participation in everyday activities.

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“…Physical activity has a major influence on TEE, 15 and it is known that patients with MD are less active than healthy controls in this respect 8,16 . Physical activity can be reliably measured using noninvasive accelerometery 17 . This, however, is not implemented in most clinical settings, and in usual care, physical activity level (PAL) is mostly estimated based on anamnestic data obtained from patients or by the use of standard PAL based on literature 8 or protocols 11,18 …”

Section: Introductionmentioning

confidence: 99%

“…8,16 Physical activity can be reliably measured using noninvasive accelerometery. 17 This, however, is not implemented in most clinical settings, and in usual care, physical activity level (PAL) is mostly estimated based on anamnestic data obtained from patients or by the use of standard PAL based on literature 8 or protocols. 11,18 The aim of this study was to identify the optimal method to estimate TEE in MD patients.…”

Section: Introductionmentioning

confidence: 99%

Optimal Estimate for Energy Requirements in Adult Patients With the m.3243A>G Mutation in Mitochondrial DNA

Zweers

Janssen

Wanten

2020

J Parenter Enteral Nutr

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Aim We aimed to identify the optimal method to estimate total energy expenditure (TEE) in mitochondrial disease (MD) patients. Methods Resting energy expenditure (REE) was measured in MD patients carrying the m3243A>G mutation using indirect calorimetry (IC) and compared with results of 21 predictive equations (PEs) for REE and with REE‐IC measurements in healthy controls. Physical activity level (PAL) was measured using accelerometery (SenseWear) and compared with a fixed average PAL (1.4) as well as patients’ self‐estimated activity levels. TEE was calculated as REE‐IC × PAL SenseWear and compared with usual care and energy recommendations for healthy adults. Results Thirty‐eight MD patients (age: 48 ± 13 years; body mass index 24 ± 4 kg/m2; male 20%) and 25 matched controls were included. The accuracy of most PEs was between 63% and 76%. The difference in REE‐IC in healthy controls (1532 ± 182 kcal) and MD patients (1430 ± 221) was borderline not significant (P = .052). Patients’ estimations PAL were 18%–34% accurate at the individual level. The fixed activity factor was 53% accurate. Patients overestimated their PAL. Usual care predicted TEE accurately in only 32% of patients. Conclusion TEE is lower in these MD patients than the recommendations for healthy adults because of their lower physical activity. In MD patients, 6 PEs for REE provide a reliable alternative for IC, with an accuracy of 71%–76%. As PAL is highly variable and not reliably estimated by patients, measurement of PAL using accelerometery is recommended in this population.

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Natural variability of daily physical activity measured by accelerometry in children with a mitochondrial disease

Cited by 8 publications

References 20 publications

Monitoring daily physical activity of upper extremity in young and adolescent boys with Duchenne muscular dystrophy: A pilot study

Monitoring daily physical activity of upper extremity in young and adolescent boys with Duchenne muscular dystrophy: A pilot study

The Perspectives and Values of Children with a Mitochondrial Disorder with Regard to Everyday Activities

Optimal Estimate for Energy Requirements in Adult Patients With the m.3243A>G Mutation in Mitochondrial DNA

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