Enteral tube feeding for cystic fibrosis

Morton, Alison; Wolfe, Susan

doi:10.1002/14651858.cd001198.pub4

Cited by 19 publications

(20 citation statements)

References 52 publications

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“…ystic fibrosis (CF) is a multi-system genetic disorder characterized by respiratory and digestive impairments, oftentimes resulting in chronic lung infections, malnutrition, and disrupted nutrient absorption (Fenton, 2000;Goodill, 2005;MacDonald, 2017;Pop-Jordanova & Demerdzieva, 2016). It is typically accompanied by physical displays of low body weight, small stature, the presence of feeding and respiratory tubes, as well as mobility devices (Morton et al, 2015;NRS Healthcare, 2019). Due to the highly exhibitory nature of this disorder, CF patients often experience psychosocial difficulties regarding their body image and self-esteem (Morton et al, 2015;Truby & Paxton, 2001;Tierney, 2012;Wenninger et al, 2003).…”

Section: Introductionmentioning

confidence: 99%

“Illustrating” the Role of the Expressive Arts Among Children and Youth with Cystic Fibrosis: A Narrative Review

Posa

Moola

2020

CRAE

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In this paper, the authors conduct a narrative review of the literature to explore the role of the expressive arts in the lives of children and youth with cystic fibrosis (CF). While most research designs in this review were case studies, researchers used a variety of art forms in their studies, including poetry, photography and drawing. Our findings reveal that researchers used the expressive arts to understand and address the psychosocial states, social health, physical health, and coping patterns of children with CF. The expressive arts might be a powerful tool to explore the facets of health in this population. Key Words: Cystic Fibrosis; Expressive Arts; Narrative Review; Child; Youth. Résumé : Les autrices proposent dans cet article une revue narrative de la littérature afin d’étudier le rôle des arts de la scène dans la vie d’enfants et de jeunes atteints de fibrose kystique. Si la plupart des études liées à cette revue relèvent d’études de cas, les chercheurs ont utilisé pour leurs études plusieurs formes d’art, notamment la poésie, la photographie et le dessin. Nos résultats démontrent que les chercheurs ont fait appel aux arts de la scène pour comprendre et aborder les conditions psychosociales, la santé sociale, la santé physique et les modes d’adaptation des enfants atteints de fibrose kystique. Les arts de la scène pourraient bien être un excellent outil pour étudier les diverses facettes de la santé au sein de cette population. Mots-clés : fibrose kystique, arts de la scène, revue narrative, enfant, jeune.

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Section: Introductionmentioning

confidence: 99%

“Illustrating” the Role of the Expressive Arts Among Children and Youth with Cystic Fibrosis: A Narrative Review

Posa

Moola

2020

CRAE

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“…The vicious circle of increased energy needs due to recurrent or chronic pulmonary infections and inflammation, increased work of breathing as well as malabsorption, in spite of pancreatic enzyme replacement therapy (PERT) leads to an energy imbalance [1][2][3]. Compromised energy intake as a result of poor appetite, vomiting and nausea caused by respiratory infections, treatment side effects and psychological factors will further induce weight loss [4]. Finally, associated diseases such as CF related diabetes (CFRD), or gastro-oesophageal reflux or coinciding diseases as celiac disease can impede weight gain [5].…”

Section: Introductionmentioning

confidence: 99%

“…To improve nutritional status, multiple interventions are often tried consecutively or simultaneously. Even without any evidence from randomized trials, enteral tube feeding (ETF) is widely accepted as a treatment option for malnutrition [4]. Several preand post-interventional studies of different design have reported on outcomes on short-and medium-term [15][16][17][18][19][20][21][22].…”

Section: Introductionmentioning

confidence: 99%

“…They indicate a possible positive effect on nutritional status if the intervention is not started too late in the course of the disease. However, if this ETF effect translates into an improved health status remains unclear, since the results on pulmonary function remain equivocal [4]. The objective of this study was to evaluate whether tube feeding had an impact on nutritional and pulmonary outcomes on the long-term using the data of the Belgian CF Registry (BCFR).…”

Section: Introductionmentioning

confidence: 99%

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The effect of enteral tube feeding in cystic fibrosis: A registry based study

Libeert

Declercq

Wanyama

et al. 2018

Journal of Cystic Fibrosis

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“…In 2013, 11.2% of patients treated at accredited US CF centers were reported as using g-tubes, but median BMI percentile among these patients 2–19 years of age was 53.3(7). Only a handful of studies have reported g-tube effectiveness for patients and there are no randomized controlled trials(8). …”

Section: Introductionmentioning

confidence: 99%

Dynamics of Disease Progression and Gastrostomy Tube Placement in Children and Adolescents with Cystic Fibrosis: Application of Joint Models for Longitudinal and Time-to-Event Data

Szczesniak

Clancy

2016

IMR

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Background Previous small-sample studies have examined the effect of gastrostomy (g-) tube placement on weight, height, and lung function in adolescent patients with cystic fibrosis (CF), but there are no RCTs to date reporting efficacy. The goal of this study was to implement a dynamic prediction model to 1) understand the role of rapid lung function decline in g-tube placement in real-world clinical settings; 2) provide a prognostic tool with the potential to aid clinicians in optimizing the timing of g-tube placement, in relation to rate of lung function decline and current nutrition status. Methods A dynamic prediction model was developed, utilizing data on patients 6–21 years of age from the Cystic Fibrosis Foundation Patient Registry (1997–2013). A joint model was implemented, which coupled a semiparametric mixed model to characterize rapid lung function decline with a time-to-event model to identify risk factors for g-tube initiation. Results The 4,034 individuals (21.3%) who underwent g-tube placement during adolescence or young adulthood had poorer nutrition and lung function at baseline and initially had increased rates of pancreatic enzyme use, infection and gastroesophageal reflux disease, compared to those who did not receive g-tubes; these associations changed over follow up. Rapid lung function decline was associated with increased risk of g-tube supplementation. Conclusions By jointly modeling longitudinal patterns of lung function decline with g-tube delivery, it is possible to construct prognostic aids to evaluate treatment delivery in relation to the onset of rapid lung function decline and other important clinical markers. These algorithms have the potential to enable more effective monitoring of disease progression and promote more timely treatment delivery.

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Enteral tube feeding for cystic fibrosis

Cited by 19 publications

References 52 publications

“Illustrating” the Role of the Expressive Arts Among Children and Youth with Cystic Fibrosis: A Narrative Review

“Illustrating” the Role of the Expressive Arts Among Children and Youth with Cystic Fibrosis: A Narrative Review

The effect of enteral tube feeding in cystic fibrosis: A registry based study

Dynamics of Disease Progression and Gastrostomy Tube Placement in Children and Adolescents with Cystic Fibrosis: Application of Joint Models for Longitudinal and Time-to-Event Data

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