Body satisfaction, nutritional adherence, and quality of life in youth with cystic fibrosis

Simon, Stacey L.; Duncan, Christina L.; Horky, Susan; Nick, Todd G.; Castro, Maria Melguizo; Riekert, Kristin A.

doi:10.1002/ppul.21477

Cited by 27 publications

(29 citation statements)

References 30 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Investigations of patient-reported outcomes in people with CF, such as health-related quality of life (HRQOL), and functional measures of health [5–17] have primarily focused on respiratory well-being and pulmonary function tests as endpoints in drug trials [11–17], although other reports have had a broader scope [5–10]. Overall, pulmonary measures are consistently associated with self-reported respiratory health.…”

Section: Introductionmentioning

confidence: 99%

Nutritional status is associated with health-related quality of life in children with cystic fibrosis aged 9–19years

Shoff¹,

Tluczek²,

Laxova³

et al. 2013

Journal of Cystic Fibrosis

View full text Add to dashboard Cite

Background The impact of improved nutritional status on health-related quality of life (HRQOL) is unknown for children with cystic fibrosis (CF). Methods Associations between nutritional status and HRQOL were examined over 2 years in 95 children, aged 9–19 years, who were followed in the Wisconsin Newborn Screening Project. HRQOL was assessed using the Cystic Fibrosis Questionnaire (CFQ). Associations between height z-score (HtZ), BMI z-score (BMIZ) and seven CFQ dimensions were evaluated. Results Mean values of at least 80 were observed for all CFQ dimensions except respiratory symptoms and treatment burden. Treatment burden was significantly worse in patients with meconium ileus (57) compared to pancreatic insufficient (65) and sufficient (78) subjects, p<0.0001. HtZ and BMIZ were positively associated with physical functioning and body image (p<0.05). Conclusions Better nutritional status was associated with increased HRQOL scores. Early diagnosis through newborn screening and improved nutrition provides an opportunity to enhance quality of life and body image perception.

show abstract

Section: Introductionmentioning

confidence: 99%

Nutritional status is associated with health-related quality of life in children with cystic fibrosis aged 9–19years

Shoff¹,

Tluczek²,

Laxova³

et al. 2013

Journal of Cystic Fibrosis

View full text Add to dashboard Cite

show abstract

“…Seven studies were of low quality, and 2 were of moderate quality. Six studies used participant questionnaires 3,25,27,29,31,37 ; 3 used parent questionnaires 3,22,31 ; one used participant interviews 38 ; one used 7-d recordings 22 ; and one used pharmacy refill records, daily telephone diaries, and electronic monitoring via the Medication Event Monitoring System (MEMS SmartCap, AARDEX, Richmond, Virginia). 3 Mean adherence ranged from 27.4 Ϯ 22.9% by daily telephone diary 3 to 96.5% by patient report.…”

Section: Pancreatic Enzyme Replacement Therapymentioning

confidence: 99%

“…3,10,11,20,[22][23][24][25][27][28][29][31][32][33][34][35][36][37][38][39] Eighteen papers were of low quality, and 2 were of moderate quality. The categories of medications are summarized below (Table 3).…”

Section: Medicationmentioning

confidence: 99%

Adherence of Subjects With Cystic Fibrosis to Their Home Program: A Systematic Review

O'Donohoe

Fullen

2014

Respir Care

View full text Add to dashboard Cite

BACKGROUND: The management of cystic fibrosis (CF) includes adherence to a home management program (airway clearance, medication, nutritional advice, and exercise). This has led to an increase in life expectancy, although the benefits depend greatly on a patient's level of adherence to daily treatments at home. To date, no systematic review has established adherence rates to all World Health Organization guidelines in the home setting; hence, this review was undertaken. METHODS: The review comprised 3 phases. A methodological assessment of databases (Embase, CINAHL, PsychINFO, PEDro, PubMed, Cochrane Central Register of Controlled Trials) identified potentially relevant papers. These papers were screened for inclusion criteria by 2 independent reviewers, data were extracted, and the internal validity was rated using a valid and reliable scale. Results were categorized into 4 themes: medication, nutrition, airway clearance techniques, and exercise. RESULTS: The search generated a total of 26 papers, 24 of which were rated as being poor quality. Adherence to a treatment program for CF patients is generally low (from 22% for nutritional guidelines to 130% for oral antibiotics), and it varies greatly depending on the type of treatment and the method of assessment employed (objective tool vs self-reported questionnaires). CONCLUSIONS: Consensus on how to measure adherence is lacking, and the quality of studies addressing adherence in this population is generally poor. Overall, studies using self-reported measures yielded higher adherence scores than those that used objective measures, suggesting that current efforts to improve methods of adherence are appropriate. The prevalence of non-adherence remains unclear due to these limitations.

show abstract

“…[13][14][15] Although several studies have looked at HRQOL in subjects with CF, few have investigated the impact of sleep quality and sleep-disordered breathing in daily life. 16 Nocturnal oxygen desaturation was associated with impaired HRQOL independent of the effects of lung function and awake gas exchange in stable out-patients with CF and moderate-tosevere lung disease.…”

Section: Introductionmentioning

confidence: 99%

Relationship Between Clinical Variables and Health-Related Quality of Life in Young Adult Subjects With Cystic Fibrosis

Forte

Perin

et al. 2015

Respir Care

View full text Add to dashboard Cite

BACKGROUND: Health-related quality of life (HRQOL) has received much attention in patients with cystic fibrosis (CF). The goal of this study was to evaluate the association between clinical, lung function, sleep quality, and polysomnographic variables with 2 HRQOL questionnaires, the shorterversion World Health Organization Quality of Life (WHOQOL-BREF) and Cystic Fibrosis Quality of Life (CFQOL) questionnaires, in adult subjects with CF. METHODS: In a cross-sectional study, 51 subjects underwent clinical evaluation and overnight polysomnography and answered WHO-QOL-BREF, CFQOL, Pittsburgh Sleep Quality Index, and Epworth Sleepiness Scale questionnaires. In addition, pulmonary function tests, 6-min walk tests, and echocardiography were performed. RESULTS: For WHOQOL-BREF scores, the sleep quality index was associated with the physical domain; the percent-of-predicted 6-min walk distance (6MWD) and sleepiness scale were associated with the psychological domain; the percent-of-predicted FEV 1 and sleep quality index were associated with the social relationship domain; and the sleep quality index was associated with the environment domain. For CFQOL scores, age at diagnosis, clinical score, and sleep quality index were associated with the physical functioning domain; the percent-of-predicted 6MWD and pulmonary arterial systolic pressure were associated with the role domain; sex and sleep quality index were associated with the vitality domain; the apnea-hypopnea index was associated with the emotional functioning domain; sex and body mass index (BMI) were associated with the body image domain; the percent-of-predicted 6MWD and sleep quality index were associated with the health perception domain; age, sex, BMI, and arousal index were associated with the weight domain; age, sex, percent-of-predicted FEV 1 , percent-of-predicted 6MWD, and pulmonary arterial systolic pressure were associated with the respiratory symptom domain; and the clinical score was associated with the digestive symptom domain. CONCLUSIONS: The sleep quality index score, 6MWD, sleepiness scale score, and FEV 1 were predictors of WHOQOL-BREF scores. Age at diagnosis, clinical score, sleep quality score, 6MWD, sex, apnea-hypopnea index, BMI, current age, arousal index, FEV 1 , and pulmonary arterial systolic pressure were predictors of CFQOL scores.

show abstract

Body satisfaction, nutritional adherence, and quality of life in youth with cystic fibrosis

Cited by 27 publications

References 30 publications

Nutritional status is associated with health-related quality of life in children with cystic fibrosis aged 9–19years

Nutritional status is associated with health-related quality of life in children with cystic fibrosis aged 9–19years

Adherence of Subjects With Cystic Fibrosis to Their Home Program: A Systematic Review

Relationship Between Clinical Variables and Health-Related Quality of Life in Young Adult Subjects With Cystic Fibrosis

Contact Info

Product

Resources

About