Linguistic validation of cystic fibrosis quality of life questionnaires

Rozov, Tatiana; Cunha, Maria Júlia Rodrigues da; Nascimento, Oliver Augusto; Quittner, Alexandra L.; Jardim, José Roberto

doi:10.2223/jped.1463

Cited by 32 publications

(39 citation statements)

References 20 publications

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“…HRQOL was measured using the WHOQOL-BREF 18 and CFQOL 19 questionnaires, which are Portuguese validated. The CFQOL questionnaire contains 44 questions and consists of the following domains: physical functioning, role, vitality, emotional functioning, social, body image, eating disturbances, treatment burden, health perceptions, weight, respiratory symptoms, and digestive symptoms.…”

Section: Hrqolmentioning

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

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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.

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Section: Hrqolmentioning

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

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“…The other questionnaires were filled out by the subjects according to the Cystic Fibrosis Questionnaire instructions. 18 Scores for each domain ranged from 0 to 100. A score of 100 was classified as very good quality of life, and scores above 50 were classified as good quality of life.…”

Section: Quality Of Life Questionnairementioning

confidence: 99%

Effects of an Educational Intervention of Physical Activity for Children and Adolescents With Cystic Fibrosis: A Randomized Controlled Trial

et al. 2014

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BACKGROUND: Regular aerobic exercise in patients with cystic fibrosis (CF) improves aerobic conditioning and delays disease progression, resulting in better quality of life. The purpose of this study was to evaluate the effect of an aerobic exercise program based on verbal and written guidelines on maximum exercise capacity using a cardiopulmonary exercise test, quality of life, and the self-reported aerobic exercise practice of children and adolescents with CF. METHODS: This randomized controlled trial followed guidelines for physical exercise in a CF center. Subjects were assigned to 2 groups: intervention (group 1), with 17 subjects; and control (group 2), also with 17 subjects. Data were collected from October 2010 to October 2011, and the study population comprised 7-20-y-old children and adolescents with CF. The intervention consisted of handing out a manual with guidelines for aerobic physical exercises and reinforcing recommendations in telephone calls every 2 weeks. RESULTS: Thirty-four subjects were included in the study, 20 of whom were boys (58.5%). The groups were similar at baseline. In group 1, 6 subjects (35.2%) reported practicing physical exercises regularly. The mean age was 13.4 ؎ 2.8 y, the mean percent-ofpredicted FEV 1 was 95.5 ؎ 17.9%, and the mean peak oxygen uptake (V O 2 ) relative to body mass was 34.9 ؎ 9.0 mL/kg/min. In group 2, 4 subjects (23.5%) reported practicing physical exercises regularly. The mean age was 12.7 ؎ 3.3 y, the mean percent-of-predicted FEV 1 was 100.1 ؎ 21.2%, and the mean peak V O 2 was 33.2 ؎ 8.2 mL/kg/min. In group 1, there was a significant increase in physical exercise practice as reported by subjects after 3 months of intervention compared with group 2 (P ‫؍‬ .01). No statistically significant differences were found for the other variables. CONCLUSIONS: Verbal and written guidelines for aerobic exercise, together with supervision over the telephone, had a positive impact on the self-reported regular physical exercise practice of children and adolescents. However, no improvement was found in lung function and maximum exercise capacity or domains of the quality of life questionnaire.

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“…The level of significance was set at 5%. (17) This study was approved by the Research Ethics Committee of the State University at Campinas School of Medical Sciences (Ruling We applied the CFQ validated for use in Brazil by Rozov et al (14) The CFQ [6][7][8][9][10][11] was applied by the principal author of the study, whereas the other three questionnaires (CFQ [12][13] , CFQ 14+ , and CFQ Parents6-13 ) were completed by the patients themselves or by their parents. By means of these instruments, the following domains are assessed: physical; body image; digestive; respiratory; emotional; social; nutrition; treatment; vitality; health; social role; and weight.…”

Section: Introductionmentioning

confidence: 99%

“…(8) In 2006, the CFQ was translated to Portuguese and validated for use in Brazil. (14) The translation was based on the English-language version, which consists of four questionnaires developed for different groups: patients ≥ 6 and < 12 years of age (CFQ [6][7][8][9][10][11] ); patients ≥ 12 and < 14 years of age (CFQ [12][13] ); patients ≥ 14 years of age (CFQ 14+ ); and parents of patients ≥ 6 and < 14 years of age (CFQ ). (14) The objective of the present study was to employ the CFQ as a means of assessing the QoL of patients with CF followed at a university hospital referral center for CF.…”

mentioning

confidence: 99%

Avaliação da qualidade de vida de pacientes com fibrose cística por meio do Cystic Fibrosis Questionnaire

Cohen

Ribeiro

et al. 2011

J. bras. pneumol.

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Objective: To assess the quality of life (QoL) of patients with cystic fibrosis (CF) followed at a university referral center for CF. Methods: A cross-sectional study involving application of the Cystic Fibrosis Questionnaire (CFQ) and Shwachman score in CF patients between April of 2008 and June of 2009. Results: The sample consisted of 75 patients. The mean age was 12.5 ± 5.1 years (range, 6.1-26.4 years). The patients were divided into three groups by age in years: group I (< 12), , and III (≥ 14). The highest and lowest CFQ scores were for the nutrition domain in group III (89.3 ± 16.2) and the social domain in group II (59.5 ± 22.3), respectively. Groups I and III differed significantly regarding the treatment domain (p = 0.001). Regarding Shwachman scores, there were significant differences between patients scoring ≤ 70 and those scoring > 70 in the social (group I; p = 0.045), respiratory (group II; p = 0.053), and digestive (p = 0.042) domains. In group III, severity did not correlate with QoL. In groups I and II, patients with an FEV 1 < 80% of predicted did not differ from other patients for any CFQ domain. However, in group III, values for the following domains were significantly lower in patients with an Resultados:Participaram 75 pacientes, com média de idade de 12,5 ± 5,1 anos (variação: 6,1-26,4 anos). Os pacientes foram divididos em três grupos de acordo com a idade: grupo I (< 12 anos), II (12-14 anos) e III (≥ 14 anos). As pontuações mais altas e mais baixas no CFQ foram para o domínio alimentação do grupo III (89,3 ± 16,2) e para o domínio social no grupo II (59,5 ± 22,3), respectivamente. Houve uma diferença significativa no domínio tratamento entre os grupos III e I (p = 0,001). Pacientes com escore de Shwachman ≤ 70 apresentaram diferenças significativas em relação aos domínios social (grupo I; p = 0,045), respiratório (grupo II; p = 0,053) e digestivo (p = 0,042) quando comparados aqueles com escores > 70. No grupo III, não se observou associação entre gravidade e QV. Nos grupos I e II, não se observou diferenças entre os pacientes com VEF 1 < 80% do previsto e os demais pacientes em todos os domínios do CFQ. Entretanto, no grupo III, as médias dos pacientes com VEF 1 < 80% do previsto foram significativamente menores nos domínios físico (p = 0,012), imagem corporal (p = 0,031), respiratório (p = 0,023), emocional (p = 0,041) e papel social (p = 0,024). Conclusões: A avaliação da QV em pacientes com FC é importante, pois contribui para uma melhor aderência ao tratamento.Descritores: Fibrose cística; Qualidade de vida; Questionários.

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Linguistic validation of cystic fibrosis quality of life questionnaires

Cited by 32 publications

References 20 publications

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

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

Effects of an Educational Intervention of Physical Activity for Children and Adolescents With Cystic Fibrosis: A Randomized Controlled Trial

Avaliação da qualidade de vida de pacientes com fibrose cística por meio do Cystic Fibrosis Questionnaire

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