scholarly journals Stigma and cystic fibrosis

2010 ◽  
Vol 18 (1) ◽  
pp. 139-142 ◽  
Author(s):  
Tainá Maues Peluci Pizzignacco ◽  
Débora Falleiros de Mello ◽  
Regina Aparecida Garcia de Lima
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Chronic Disease ◽  
Children And Adolescents ◽  
Treatment Adherence ◽  
Family Relationships ◽  
Life Histories ◽  
Autosomal Recessive ◽  
Family Members

Cystic Fibrosis (CF), also known as Mucoviscidosis, is a chronic disease of autosomal recessive origin and so far incurable. This analysis considers some characteristics of patients and family members that indicate it is a stigmatizing disease. The CF stigma’s impact on the lives of children and adolescents can affect treatment adherence, socialization, family relationships and the formation of their life histories, with direct consequences on their quality of life.

scholarly journals Effects of aerobic interval training on glucose tolerance in children and adolescents with cystic fibrosis: a randomized trial protocol

Trials ◽  
2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Karolinne Souza Monteiro ◽  
Matheus de Paiva Azevedo ◽  
Lucas Menescal Jales ◽  
Fernanda Elizabeth Pereira da Silva ◽  
Ricardo Fernando Arrais ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Lung Function ◽  
Glucose Tolerance ◽  
Children And Adolescents ◽  
Interval Training ◽  
Moderate Intensity ◽  
Registration System ◽  
Aerobic Interval Training

Abstract Background Individuals with cystic fibrosis (CF) may develop CF-related diabetes (CFDR). This comorbidity is related to a poorer quality of life, microvascular complications, a decline in lung function, and an increase in exacerbations, as well as delayed growth and puberty. Evidence exists that physical exercise contributes to glycemic control in individuals with non-CF-related diabetes. This exercise is usually continuous with moderate intensity and long duration, which can cause muscle dyspnea and fatigue in CF individuals. Aerobic interval training (AIT) emerges as a safe and effective alternative for treating these individuals. The objective of this study is to evaluate the effects of AIT on glucose tolerance in children and adolescents with CF. Methods This study will be a two-arm, prospectively registered, randomized controlled trial with blind assessors and twenty 6- to 18-year-old individuals with cystic fibrosis (CF) from two different Brazilian states. People with CF will be randomly allocated to either the experimental or control group using block randomization, stratified by puberty stage,. Participants from both groups will receive an educational intervention and will be asked to continue their usual daily treatment for the full duration of the study. Those in the experimental group will perform AIT on a cycle ergometer at home three times a week, for 8 consecutive weeks. The sample characterization will include an assessment of puberty stage, socioeconomic status, dyspnea, and anthropometry. The primary outcome will be the change in glucose tolerance, while the secondary outcomes will include lung function, exercise tolerance, respiratory muscle strength, quality of life, and CF exacerbations. All outcomes will be assessed at baseline, week 9, and week 17. Discussion This is the first study to evaluate the effects of AIT on glucose tolerance in children and adolescents with CF. This study will serve as a basis for guiding clinical practice and decision-making in treating glucose intolerance and CF-related diabetes (CFRD) in children and adolescents with CF. Trial registration ClinicalTrials.gov Protocol Registration System: NCT03653949. Registered on August 31, 2018.

scholarly journals The Effect of Coaching on Physical Activity and Quality of Life in Children and Adolescents with Cystic Fibrosis: A Quality Improvement Pilot Study

2010 ◽  
Author(s):  
Anne Swisher ◽  
Kathryn Moffett
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Cystic Fibrosis ◽  
Pilot Study ◽  
Children And Adolescents ◽  
Life Questionnaire ◽  
Activity Levels ◽  
Small Pilot Study ◽  
Phone Calls

Purpose: Physical activity is well known to improve or maintain exercise capacity and overall health in patients with cystic fibrosis (CF). However, many patients do not meet recommended guidelines for physical activity. The purpose of this study was to determine if individualized, targeted coaching could improve the levels of physical activity and quality of life in children and adolescents with CF. Subjects: Twelve children with CF, ages 7 to 17, participated in this study.Method: Each participant completed a physical activity questionnaire (PAQ) and a disease-specific quality of life questionnaire (CFQ) at baseline and three months later. The participants were given pedometers and a 10,000 step per day target. Participants also participated in discussions regarding ways to increase physical activity appropriate for their interest, abilities and age. Weekly follow-up phone calls were made to obtain pedometer counts and discuss physical activities performed. Results: Physical activity scores (PAQ) improved in 6 of 12 participants. Quality of life improved in many dimensions of the CFQ, particularly in vitality (3 of 5 improved); emotional (8 of 12 improved) and respiratory (7 of 12 improved). Conclusions: The results of this small pilot study suggest that an individualized coaching approach to physical activity in children and adolescents with CF may improve physical activity levels and improve important aspects of quality of life in some children with CF.

Telephone monitoring and home visits significantly improved the quality of life, treatment adherence and lung function in children with cystic fibrosis

2017 ◽  
Vol 106 (11) ◽  
pp. 1882-1882 ◽  
Author(s):  
Elisavet-Anna Chrysochoou ◽  
Elpis Hatziagorou ◽  
Fotis Kirvassilis ◽  
John Tsanakas
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Lung Function ◽  
Treatment Adherence ◽  
Home Visits ◽  
Telephone Monitoring

AB017. Associations between physical activity and quality of life in children and adolescents with cystic fibrosis

2018 ◽  
Vol 1 ◽  
pp. AB017-AB017
Author(s):  
Jorge Lizandra ◽  
Alexandra Valencia-Peris ◽  
Amparo Escribano ◽  
Silvia Castillo ◽  
Elena Lopez-Cañada ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Cystic Fibrosis ◽  
Children And Adolescents

scholarly journals FACTORS ASSOCIATED TO QUALITY OF LIFE IN CHILDREN AND ADOLESCENTS WITH CYSTIC FIBROSIS

2020 ◽  
Vol 38 ◽  
Author(s):  
Nelbe Nesi Santana ◽  
Célia Regina Moutinho de Miranda Chaves ◽  
Christine Pereira Gonçalves ◽  
Saint Clair dos Santos Gomes Junior
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Nutritional Status ◽  
Children And Adolescents ◽  
Functional Capacity ◽  
Clinical Status ◽  
Forced Expiratory Volume ◽  
Cross Sectional ◽  
Function Test

ABSTRACT Objective: To verify the association between quality of life, functional capacity and clinical and nutritional status in children and adolescents with cystic fibrosis (CF). Methods: Cross-sectional study, including patients from eight to 18 years old with CF. Quality of life, functional capacity, nutritional status and clinical status were evaluated with the Cystic Fibrosis Questionnaire; the 6-minute walk test (6MWT) and manual gripping force (MGF); the height percentiles for age and body mass index for age and respiratory function test, respectively. Pearson and Spearman correlation tests and logistic regression were used to analyze the data. Results: A total of 45 patients, 13.4±0.5 years old, 60% female, 60% colonized by Pseudomonas aeruginosa and 57.8% with at least one F508del mutation participated in the study. When assessing the perception of quality of life, the weight domain reached the lowest values, and the digestive domain, the highest. In the pulmonary function test, the forced expiratory volume of the first second was 77.3±3.3% and the 6MWT and MGF presented values within the normal range. There was an association between quality of life and functional capacity, nutritional status and clinical status of CF patients. Conclusions: The study participants had good clinical conditions and satisfactory values of functional capacity and quality of life. The findings reinforce that the assessment of quality of life may be important for clinical practice in the management of treatment.

Fatigue in childhood chronic disease

2019 ◽  
Vol 104 (11) ◽  
pp. 1090-1095 ◽  
Author(s):  
Merel M Nap-van der Vlist ◽  
Geertje W Dalmeijer ◽  
Martha A Grootenhuis ◽  
Cornelis K van der Ent ◽  
Marry M van den Heuvel-Eibrink ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Chronic Disease ◽  
Children And Adolescents ◽  
Linear Regression Analysis ◽  
Calculated Data ◽  
Psychosocial Treatment ◽  
Analysis Of Covariance ◽  
Common Symptom ◽  
Cross Sectional

Background and objectivesRecently, in adults, the incidence and severity of fatigue was found to exist rather independently from the somatic diagnosis. Since fatigue is distressing when growing up with a chronic disease, we aim to investigate: (1) the prevalence and extent of fatigue among various paediatric chronic diseases and (2) the effect of fatigue on health-related quality of life (HRQoL).Design and settingCross-sectional study in two children’s hospitals.PatientsChildren and adolescents 2–18 years of age with cystic fibrosis, an autoimmune disease or postcancer treatment visiting the outpatient clinic.Outcome measuresFatigue and HRQoL were assessed using the Pediatric Quality of Life Inventory (PedsQL) multidimensional fatigue scale (with lower scores indicating more fatigue) and PedsQL generic core scales, respectively. Linear regression analysis and analysis of covariance were used to compare fatigue scores across disease groups and against two control groups. The effect of fatigue on HRQoL was calculated. Data were adjusted for age, sex and reporting method.Results481 children and adolescents were assessed (60% participation rate, mean age 10.7±4.9, 42% men). Children and adolescents with chronic disease reported more fatigue than the general population (mean difference −6.6, 95% CI −8.9 to –4.3 (range 0–100)), with a prevalence of severe fatigue of 21.2%. Fatigue scores did not differ significantly between disease groups on any fatigue domain. Fatigue was associated with lower HRQoL on all domains.ConclusionsFatigue in childhood chronic disease is a common symptom that presents across disease, age and sex groups. Fatigue affects HRQoL. Our findings underscore the need to systematically assess fatigue. Future studies should determine possible biological and psychosocial treatment targets.

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