Developing a measure of eating attitudes and behaviours in cystic fibrosis

Randlesome, Katy; Bryon, Mandy; Evangeli, Michael

doi:10.1016/j.jcf.2012.05.005

Cited by 17 publications

(21 citation statements)

References 17 publications

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“…Competing demands from CF management including monitoring of nutritional status emphasising weight gain within a culture emphasising thinness contribute to confused attitudes towards eating. Disordered eating and body image problems have been reported in people with CF [114].…”

Section: How Do We Promote Psychosocial Resilience At Key Transition Points and Address Potential Associated Psychosocial Vulnerability?mentioning

confidence: 99%

European Cystic Fibrosis Society Standards of Care: Best Practice guidelines

Smyth

Bell

Bojcin³

et al. 2014

Journal of Cystic Fibrosis

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488

412

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Specialised CF care has led to a dramatic improvement in survival in CF: in the last four decades, well above what was seen in the general population over the same period. With the implementation of newborn screening in many European countries, centres are increasingly caring for a cohort of patients who have minimal lung disease at diagnosis and therefore have the potential to enjoy an excellent quality of life and an even greater life expectancy than was seen previously. To allow high quality care to be delivered throughout Europe, a landmark document was published in 2005 that sets standards of care. Our current document builds on this work, setting standards for best practice in key aspects of CF care. The objective of our document is to give a broad overview of the standards expected for screening, diagnosis, pre-emptive treatment of lung disease, nutrition, complications, transplant/end of life care and psychological support. For comprehensive details of clinical care of CF, references to the most up to date European Consensus Statements, Guidelines or Position Papers are provided in Table 1. We hope that this best practice document will be useful to clinical teams both in countries where CF care is developing and those with established CF centres.

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Section: How Do We Promote Psychosocial Resilience At Key Transition Points and Address Potential Associated Psychosocial Vulnerability?mentioning

confidence: 99%

European Cystic Fibrosis Society Standards of Care: Best Practice guidelines

Smyth

Bell

Bojcin³

et al. 2014

Journal of Cystic Fibrosis

Self Cite

488

412

View full text Add to dashboard Cite

show abstract

“…A recently validated CF-specific screening tool for assessing eating attitudes and behaviors in the European population has been developed with promising psychometrics in detecting disordered eating. 16 Further work is warranted in developing a psychometrically sound CF-specific disordered eating screening tool in the U.S. population.…”

Section: Discussionmentioning

confidence: 99%

Health care provider’s experiences, practices, and recommendations for interventions and screening of cystic fibrosis patients with disordered eating: A qualitative analysis

Quick

Chang

2019

Chronic Illness

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Objectives To investigate health care providers’ perspectives on their experiences and practices with cystic fibrosis patients exhibiting disordered eating behaviors and their recommendations for interventions and screening of this population. Methods Experienced health care providers (N = 17) were recruited from the Cystic Fibrosis Foundation listserv to participate in a semi-structured interview via phone. Two trained qualitative researchers independently coded audio-recorded interview scripts. Major themes were generated from questions inquiring health care providers’ perspectives on their experiences and practices with cystic fibrosis patients exhibiting disordered eating behaviors and their recommendations for better interventions and screening of disordered eating. Results The most prominent disordered eating behaviors observed by health care providers in cystic fibrosis patients were misusing pancreatic enzyme medication (53%), food restriction behaviors (47%), binge eating (29%), and skipping meals (29%). Over half (53%) of health care providers reported not having policies or procedures for disordered eating of cystic fibrosis patients. All health care providers thought it would be beneficial to have a cystic fibrosis-specific disordered eating screening tool. Recommendations by health care providers included developing a national standard protocol for cystic fibrosis disordered eating and educational training for health care providers. Discussion Ongoing development of evidence-based guidelines for screening and treating disordered eating among cystic fibrosis patients is warranted including development of a cystic fibrosis-specific disordered eating screening tool.

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“…Therefore, a CF specific screening tool has been developed to identify these behaviours, which include omitting pancreatic enzymes or insulin in order to control weight. (5) It might appear that there should be a greater incidence of eating disorders amongst the CF population given the continued emphasis on the attainment of optimal BMI; however the evidence is inconclusive (6). In general, adolescents with chronic illnesses that have a dietary component have been found to be at increased risk for developing eating disorders or disordered eating behaviour compared to their peers (6).…”

Section: How Can We Identify Manage and Monitor Cf Patients At Risk mentioning

confidence: 99%

“…However, with respect to CF there is some work which demonstrates adolescents and young adults with CF have eating behaviour and attitudes, body satisfaction and self-esteem, similar to healthy controls. There is a suggestion that females with CF actually have fewer problems (5).…”

Section: How Can We Identify Manage and Monitor Cf Patients At Risk mentioning

confidence: 99%

Anorexia nervosa in cystic fibrosis

Linkson

Macedo

Perrin

et al. 2018

Paediatric Respiratory Reviews

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This article explores the challenges associated with diagnosing and managing eating disorders such as anorexia nervosa amongst adolescents and adults with cystic fibrosis. It reviews the known risk factors, generic verses disease specific eating disorder risk screening tools and considers the ethical dilemmas associated with critically low body mass indices. A case review is included to illustrate the complexities of managing both conditions in the context of declining respiratory function.

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Developing a measure of eating attitudes and behaviours in cystic fibrosis

Abstract: The measure looks promising as a tool to highlight EAB disturbance in CF. Further work will establish its construct validity and clarify interpretation of subscales.

Cited by 17 publications

References 17 publications

European Cystic Fibrosis Society Standards of Care: Best Practice guidelines

European Cystic Fibrosis Society Standards of Care: Best Practice guidelines

Health care provider’s experiences, practices, and recommendations for interventions and screening of cystic fibrosis patients with disordered eating: A qualitative analysis

Anorexia nervosa in cystic fibrosis

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