Development of clinical practice guidelines for allied health and nursing assessment and management of Duchenne muscular dystrophy

Davidson, Zoe; Bray, Paula; Rose, Kristy; Corben, Louise A.; North, Klaus; Ryan, Monique M.; Burns, Joshua

doi:10.1080/09638288.2021.1936221

Cited by 6 publications

(15 citation statements)

References 120 publications

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“…Ideally, weight management would be multidisciplinary, but health professionals have reported a lack of confidence in addressing weight in DMD 26 . There may also be a lack of access to appropriate and sustainable clinical resources and clinicians with a suitable level of competency and understanding of DMD (e.g., psychologists 27 ) in addition to weight management. There are also many issues to discuss during routine neuromuscular clinic appointments, and some health care professionals feel apprehensive discussing the topic of weight 18 .…”

Section: Discussionmentioning

confidence: 99%

Exploring caregivers' attitudes and beliefs about nutrition and weight management for young people with Duchenne muscular dystrophy

Billich,

Bray,

Truby

et al. 2024

Muscle and Nerve

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Introduction/AimsObesity disproportionately affects children and adolescents with Duchenne muscular dystrophy (DMD) and with adverse consequences for disease progression. This study aims to: explore barriers, enablers, attitudes, and beliefs about nutrition and weight management; and to obtain caregiver preferences for the design of a weight management program for DMD.MethodsWe surveyed caregivers of young people with DMD from four Australian pediatric neuromuscular clinics. Survey questions were informed by the Theoretical Domains Framework and purposefully designed to explore barriers and enablers to food and weight management. Caregivers were asked to identify their preferred features in a weight management program for families living with DMD.ResultsFifty‐three caregivers completed the survey. Almost half (48%) perceived their son as above healthy weight. Consequences for those children were perceived to be self‐consciousness (71%), a negative impact on self‐esteem (64%) and movement (57%). Preventing weight gain was a common reason for providing healthy food and healthy eating was a high priority for families. Barriers to that intention included: time constraints, selective food preferences, and insufficient nutrition information. Caregivers preferred an intensive six‐week weight management program addressing appetite management and screen time.DiscussionManaging weight is an important issue for caregivers of sons with DMD; yet several barriers exist. Individualized 6 week programs are preferred by caregivers to improve weight management for DMD.

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Section: Discussionmentioning

confidence: 99%

Exploring caregivers' attitudes and beliefs about nutrition and weight management for young people with Duchenne muscular dystrophy

Billich,

Bray,

Truby

et al. 2024

Muscle and Nerve

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“…Considering energy intake per kilogram of body weight may be particularly useful for healthy weight boys with DMD when aiming for target energy intake to prevent excessive weight gain. In clinical practice, the daily energy requirements estimated by the Schofield weight equation, 27 with a physical activity factor of 1.3–1.4 for ambulatory boys and a factor of 1.0–1.1 for non‐ambulatory boys applied, can be divided by total body weight as a reference value for energy intake 36 . For boys with obesity and when weight loss is clinically indicated (e.g., post‐pubertal), clinicians could consider using an adjusted body weight to estimate energy needs.…”

Section: Discussionmentioning

confidence: 99%

The association between dietary factors and body weight and composition in boys with Duchenne muscular dystrophy

Billich

Evans

Truby

et al. 2022

J Human Nutrition Diet

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Background: Duchenne muscular dystrophy (DMD) is a X-linked neuromuscular disorder. Boys with DMD have high rates of obesity, although little is known about dietary factors that may contribute to weight gain in this population. The present study aimed to explore the relationship between dietary factors, body mass index (BMI) z-score, body composition and motor function and to describe dietary intake in boys with DMD. Methods: A cross-sectional analysis of 3-day food diaries from ambulant and steroid treated boys with DMD aged 5-13 years was conducted. Correlation analysis explored the relationship between dietary factors, BMI z-score, fat mass percentage (FM%) and lean mass percentage (LM%). Results: The median age was 8.5 years (interquartile range [IQR] = 7.2-10.5 years). Median energy kg -1 day -1 in those within a healthy weight range (n = 11) was 316 kJ kg -1 day -1 (IQR = 276-355 kJ kg -1 day -1 ) and greater than estimated requirements and, for those above a healthy weight (n = 26), energy intake was 185 kJ kg -1 day -1 (IQR = 143-214 kJ kg -1 day -1 ) and lower than estimated requirements. Energy kg -1 day -1 was negatively associated with BMI z-score (r = −0. 650) and FM% (r = −0.817) but positively associated with LM% (r = 0.805; all analyses p = <0.01). Younger age was associated (r = −0.609 p = <0.01) with a higher energy kg -1 day -1 . For all participants, vegetable, grains, meat/alternatives and dairy intakes were sub-optimal. Conclusions: Younger boys with DMD within a healthy weight range are overconsuming energy dense nutrient poor foods. A focus on improving diet quality during early childhood may prove to be a useful strategy for reducing excess weight gain and supporting healthier eating habits in this vulnerable clinical population.

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“…The CPGs were from England (developed by the National Institute for Health and Care Excellence [NICE]), the United States of America (developed by the American Academy of Neurology (15)(16)(17)(18). Two CPGs focused on recommendations for the diagnosis, treatment, and rehabilitation of DMD (15,18), and one particularly focused its recommendations on nursing and other professional practices (15). The remaining two CPGs focused on treatment with ataluren (17) and corticosteroid therapy (16) (Table 1).…”

Section: Cpg Characteristicsmentioning

confidence: 99%

“…In 2/4 CPGs, the guideline developers included physicians, neurologists, nurses, rehabilitation therapists, nutritionists, and other nonhealth care professionals, such as economists (15,18). The remaining guidelines included physicians, neurologists, nurses, and specialists in technology evaluation (16,17).…”

Section: Cpg Characteristicsmentioning

confidence: 99%

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Clinical practice guidelines for the diagnosis and management of Duchenne muscular dystrophy: a scoping review

Malaga,

Rodriguez-Calienes,

Chavez-Ecos

et al. 2024

Front. Neurol.

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IntroductionOur objective was to identify recent CPGs for the diagnosis and management of DMD and summarize their characteristics and reliability.MethodsWe conducted a scoping review of CPGs using MEDLINE, the Turning Research Into Practice (TRIP) database, Google Scholar, guidelines created by organizations, and other repositories to identify CPGs published in the last 5 years. Our protocol was drafted using the Preferred Reporting Items for Systematic Reviews and Meta-analyses for scoping reviews. To assess the reliability of the CPGs, we used all the domains included in the Appraisal of Guidelines Research and Evaluation II.ResultsWe selected three CPGs published or updated between 2015 and 2020. All the guidelines showed good or adequate methodological rigor but presented pitfalls in stakeholder involvement and applicability domains. Recommendations were coherent across CPGs on steroid treatment, except for minor differences in dosing regimens. However, the recommendations were different for new drugs.DiscussionThere is a need for current and reliable CPGs that develop broad topics on the management of DMD and consider the challenges of developing recommendations for RDs.

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Development of clinical practice guidelines for allied health and nursing assessment and management of Duchenne muscular dystrophy

Cited by 6 publications

References 120 publications

Exploring caregivers' attitudes and beliefs about nutrition and weight management for young people with Duchenne muscular dystrophy

Exploring caregivers' attitudes and beliefs about nutrition and weight management for young people with Duchenne muscular dystrophy

The association between dietary factors and body weight and composition in boys with Duchenne muscular dystrophy

Clinical practice guidelines for the diagnosis and management of Duchenne muscular dystrophy: a scoping review

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