Quality of life in young people with cystic fibrosis: effects of hospitalization, age and gender, and differences in parent/child perceptions

Hegarty, Matthew; MacDonald, Julie; Watter, Pauline; Wilson, Cate

doi:10.1111/j.1365-2214.2008.00900.x

Cited by 53 publications

(50 citation statements)

References 23 publications

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“…40,41 Of note, girls with CF have reported more emotional symptoms and greater pain, spend more time in the hospital than boys with a similar level of illness, [41][42][43] and have a worse prognosis than boys. [44][45][46][47][48] Our findings suggest that boys may emphasize taking responsibility for their treatments and maintaining a positive attitude, whereas some girls expressed the value of sharing responsibility for their health management with, for example, their parent or doctor. Some boys reported body image concerns and were motivated to exercise to achieve a more muscular physique.…”

Section: Discussionmentioning

confidence: 84%

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

Jamieson¹,

Fitzgerald

Singh‐Grewal

et al. 2014

PEDIATRICS

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Section: Discussionmentioning

confidence: 84%

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

Jamieson¹,

Fitzgerald

Singh‐Grewal

et al. 2014

PEDIATRICS

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“…PEs treated with intravenous antibiotics are known to have an impact on long-term outcomes26 and patient-reported outcomes,27 which suggests that our definition of PE represented a relevant clinical outcome. Episodes of treatment with oral antibiotics were not considered in the present study as their impact on outcomes has not been established and because oral antibiotics are also prescribed for positive airway cultures, regardless of clinical symptoms.…”

Section: Discussionmentioning

confidence: 99%

Lung clearance index predicts pulmonary exacerbations in young patients with cystic fibrosis

Vermeulen

Proesmans

Boon

et al. 2013

Thorax

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RationaleThe lung clearance index (LCI) is a promising endpoint for use in cystic fibrosis (CF) clinical trials, but correlations with validated clinical endpoints have not yet been established. Objective This study aimed to demonstrate that, in young patients with CF, baseline LCI predicts subsequent pulmonary exacerbation (PE) and correlates with the respiratory domain of the CF Questionnaire-Revised (CFQ-R resp ). Methods Baseline LCI, forced expiratory volume in 1 s (FEV 1 ), CFQ-R resp and PEs over the subsequent year were prospectively recorded in 63 patients aged 5-19 years. The ability of baseline LCI to predict PE was assessed using negative binomial regression models and KaplanMeier plots. Results Twenty-six patients (41%) experienced 48 PEs. Baseline LCI and FEV 1 were predictors of PE. Compared with the quartile with the lowest LCI, the annual PE rate in increasing LCI quartiles was 2.9 (95% CI 0.5 to 16.5, p=0.238), 5.4 (95% CI 1.0 to 29.0, p=0.045) and 13.6 (95% CI 2.8 to 67.1, p=0.001). Similarly, time to first PE decreased with worsening LCI quartiles (log-rank test for trend, p<0.001). Furthermore, LCI correlated with CFQ-R resp (r=−0.43, p<0.001). In the subgroup of 53 patients with normal FEV 1 , LCI was a predictor of PE. In this subgroup, LCI also correlated with CFQ-R resp (r=−0.282, p=0.043). Conclusions Baseline LCI predicts PE in young patients with CF and correlates with CFQ-R resp , a validated patient-reported outcome, even in the subgroup with normal FEV 1 . These data further support the use of LCI as a surrogate outcome measure in CF clinical trials.

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“…Some studies have shown that hospitalized children and adolescents had lower HRQOL scores for emotional, social and body image dimensions (7) and children may have lower HRQOL than adolescents because they do not understand their condition and treatment (6) , which makes them feel as something imposed on their life.…”

Section: Introductionmentioning

confidence: 99%

Adaptação cultural e propriedades psicométricas iniciais do instrumento DISABKIDS ® – Cystic Fibrosis Module – versão brasileira

Santos

Deon

Fegadolli

et al. 2013

Rev. esc. enferm. USP

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RESUMOEste estudo objetivou adaptar culturalmente e descrever as propriedades psicométricas iniciais do instrumento de mensuração de qualidade de vida relacionada à saú-de DISABKIDS® − Cystic Fibrosis Module para crianças e adolescentes e seus pais/ cuidadores. Estudo metodológico de desenvolvimento sequencial, incluindo 126 participantes em quatro estados brasileiros. Envolveu tradução e retrotradução dos itens, equivalência conceitual e semântica, validade de face e descrição das propriedades psicométricas iniciais relacionadas ao construto e fidedignidade. Para equivalência semântica da versão adaptada houve ajustes na redação de um item. O instrumento apresentou consistência interna satisfatória com valores de alfa de Cronbach entre 0,70 e 0,85, validade convergente com valores de correlação acima 0,40 em 85% dos itens e validade divergente com valores de ajuste superiores a 75%. A versão brasileira do DISABKIDS® -CFM certamente se constituirá em um instrumento válido e confiável para a mensuração da qualidade de vida de crianças e adolescentes brasileiros com fibrose cística. DESCRITORES RESUMENEste estudio tuvo como objetivo adaptar culturalmente y describir las propiedades psicométricas iniciales del instrumento de medida de la calidad de vida relacionada a la salud, DISABKIDS® -Cystic Fibrosis Module para niños/adolescentes y sus padres/cuidadores. Estudio metodológico de desarrollo secuencial, incluyendo 126 participantes en cuatro estados brasileños. Envolvió la traducción y retro-traducción de los ítems, la equivalencia conceptual y semántica, la validez externa y la descripción de las propiedades psicométricas iniciales con relación al constructo y la confiabilidad. Para la equivalencia semántica de la versión adaptada hubo ajustes en la redacción de un ítem. El instrumento presentó consistencia interna satisfactoria con valores de alfa de Cronbach entre 0,70 y 0,85, validez convergente con valores de correlación superiores a 0,40 en 85% de los ítems y validez divergente con valores de ajuste superiores a 75%. La versión brasileña del DISABKIDS® -CFM ciertamente será un instrumento válido y confiable para medir la Calidad de Vida de niños y adolescentes con fibrosis quística.

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Quality of life in young people with cystic fibrosis: effects of hospitalization, age and gender, and differences in parent/child perceptions

Abstract: The CFQ-R found differences between inpatients and outpatients and between younger and older paediatric patients with CF, and between parent and child perceptions of QOL.

Cited by 53 publications

References 23 publications

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

Lung clearance index predicts pulmonary exacerbations in young patients with cystic fibrosis

Adaptação cultural e propriedades psicométricas iniciais do instrumento DISABKIDS ® – Cystic Fibrosis Module – versão brasileira

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