The assessment of food‐related problems in individuals with Prader‐Willi syndrome

Russell, Helen; Oliver, Chris

doi:10.1348/014466503322528928

Cited by 49 publications

(51 citation statements)

References 43 publications

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“…Thus, our results are not totally consistent with the previous studies. On the other hand, Russell and Oliver [19] showed a within-syndrome variability of eating behavior measurements in PWS, and the large variability in the small number participating in the present study might be one of the explanations for the discrepancies. A previous study of eating behavior monitored with the VIKTOR equipment showed that 50% of children with PWS had accelerating eating curves [4] , but this pattern could not be confirmed in our adult group.…”

Section: Discussioncontrasting

confidence: 55%

Eating Behavior and Gastric Emptying in Adults with Prader-Willi Syndrome

Höybye

Barkeling²,

Näslund³

et al. 2007

Ann Nutr Metab

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Background/Aims: Prader-Willi syndrome (PWS) is a complex genetic disorder characterized by distinctive physical, behavioral and psychiatric features. One cardinal symptom is excessive eating, often leading to extreme obesity. The etiology of the hyperphagia is unknown, but eating behaviors and gastrointestinal motility could play a pivotal role. In this pilot study, we therefore sought to give a closer description of the two. Methods: 12 PWS adults, 6 men and 6 women, 17–37 years of age with a median BMI of 34.9 were evaluated. Computerized monitoring of eating behavior and assessment of gastric emptying using paracetamol absorption were analyzed. Gastric emptying rate was compared to the rate in normal and obese controls. Results: Eating behavior pattern was nonhomogeneous in the PWS patients, but they experienced both hunger and satiation. In PWS gastric emptying was similar to lean subjects (p > 0.05), but longer than in obese subjects (p < 0.05). Conclusions: Despite obesity, this group of adults with PWS did not display overeating in the test situation and gastric emptying rate was normal. Numbers are small, but the results are important for the treatment of obesity in this special group of patients.

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Section: Discussioncontrasting

confidence: 55%

Eating Behavior and Gastric Emptying in Adults with Prader-Willi Syndrome

Höybye

Barkeling²,

Näslund³

et al. 2007

Ann Nutr Metab

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“…Structured psychiatric interviews, such as the K-SADS-PL (Kaufman et al, 1997) and NIMH-DISC-IV (Shaffer, Fisher, Lucas, Dulcan, & Schwab-Stone, 2000), represent another option for measuring psychiatric outcome, but the application of these methods to an IDD population in a clinical trial remain relatively unknown. In need of further exploration and development are outcome measures to assess frontal systems, motivation/initiation (Malloy & Grace, 2005), eating/appetite regulation (Russell & Oliver, 2003), self-talk/voices (Chadwick, Lees, & Birchwood, 2000), regression/functional decline, and specific psychopathologies such as psychosis (Hatton et al, 2005). …”

Section: Resultsmentioning

confidence: 99%

Outcome Measures for Clinical Trials in Down Syndrome

Esbensen

Hooper

Fidler

et al. 2017

American Journal on Intellectual and Developmental Disabilities

120

176

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Increasingly individuals with intellectual and developmental disabilities, including Down syndrome, are being targeted for clinical trials. However, a challenge exists in effectively evaluating the outcomes of these new pharmacological interventions. Few empirically evaluated, psychometrically sound outcome measures appropriate for use in clinical trials with individuals with Down syndrome have been identified. To address this challenge, the NIH assembled leading clinicians and scientists to review existing measures and identify those that currently are appropriate for trials; those that may be appropriate after expansion of age range addition of easier items, and/or downward extension of psychometric norms; and areas where new measures need to be developed. This paper focuses on measures in the areas of cognition and behavior.

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“…Russell and Oliver (2003) Roof et al, 2000), very few studies have used such reports due to issues with reliability and validity (Dykens et al, 2007).…”

Section: Assessment Of Internal States Within Individuals With Intellmentioning

confidence: 99%

The expression and assessment of emotions and internal states in individuals with severe or profound intellectual disabilities

Adams¹,

Oliver²

2011

Clinical Psychology Review

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The expression of emotions and internal states by individuals with severe or profound intellectual disabilities is a comparatively under-researched area. Comprehensive or standardised methods of assessing or understanding the emotions and internal states within this population, whose ability to communicate is significantly compromised, do not exist.The literature base will be discussed and compared to that within the general population.Methods of assessing broader internal states, notably depression, anxiety, and pain within severe or profound intellectual disabilities are also addressed. Finally, this review will examine methods of assessing internal states within genetic syndromes, including hunger, social anxiety and happiness within Prader-Willi, Fragile-X and Angelman syndrome. This will then allow for the identification of robust methodologies used in assessing the expression of these internal states, some of which may be useful when considering how to assess emotions within individuals with intellectual disabilities.

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The assessment of food‐related problems in individuals with Prader‐Willi syndrome

Cited by 49 publications

References 43 publications

Eating Behavior and Gastric Emptying in Adults with Prader-Willi Syndrome

Eating Behavior and Gastric Emptying in Adults with Prader-Willi Syndrome

Outcome Measures for Clinical Trials in Down Syndrome

The expression and assessment of emotions and internal states in individuals with severe or profound intellectual disabilities

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