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.

scholarly journals Qualidade de vida de crianças e adolescentes com fibrose cística

2019 ◽  
Vol 13 (3) ◽  
pp. 551
Author(s):  
Layanna Thomaz Lima Da Silva ◽  
Bruna Hinnah Borges Martins De Freitas ◽  
Joerko Campos De Deus ◽  
Juliano Bortolini
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Children And Adolescents ◽  
Clinical Status ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Calidad De Vida ◽  
Related Quality ◽  
The Impact

RESUMOObjetivo: avaliar a qualidade de vida relacionada à saúde (QVRS) de crianças e adolescentes com fibrose cística. Método: trata-se de um estudo quantitativo e transversal, realizado com crianças e adolescentes. Coletaram-se os dados no ambulatório semanalmente com o instrumento DISABKIDS® na perspectiva dos indivíduos (Self) e dos seus pais ou cuidadores (Proxy). Realizou-se a análise estatística por técnicas descritivas no software SPSS 20, sendo construídas tabelas de frequências. Resultados: constituiu-se a amostra por 11 sujeitos. Registrou-se que a maioria (63,6%) dos acompanhantes era de mães com idade média de 41 anos. Apontaram-se, na dimensão impacto, pela Self, uma média de 66,4 e, na Proxy, de 69,5; entretanto, na dimensão tratamento, pela versão Self, obteve-se uma média de 72,4 e, pela Proxy, de 66,9. Classificou-se a maioria dos pacientes com boa condição clínica (45,4%) de acordo com o escore de Shwachman-Kulczyki. Conclusão: conclui-se que as crianças e adolescentes percebem uma melhor QVRS quanto ao tratamento e uma pior QVRS quanto ao impacto da doença, quando comparados aos seus pais/cuidadores. Descritores: Fibrose Cística; Doença Crônica; Qualidade de Vida; Atenção à Saúde; Criança; Adolescente.ABSTRACT Objective: to evaluate the health-related quality of life (HRQoL) of children and adolescents with cystic fibrosis. Method: this is a quantitative and cross-sectional study with children and adolescents. Data was collected in the outpatient clinic weekly with the DISABKIDS® instrument from the perspective of individuals (Self) and their parents or caregivers (Proxy). Statistical analysis was performed using descriptive techniques in SPSS 20 software, and frequency tables were constructed. Results: the sample was constituted by 11 subjects. It was recorded that the majority (63.6%) of the companions were mothers with a mean age of 41 years. In the Impact dimension, Self showed an average of 66.4 and, in Proxy, 69.5; however, in the treatment dimension, by the Self version, we obtained an average of 72.4 and, by Proxy, 66.9. The majority of patients with good clinical status (45.4%) were classified according to the Shwachman-Kulczyki score. Conclusion: it is concluded that children and adolescents perceive a better HRQoL on treatment and a worse HRQoL on the impact of the disease, when compared to their parents/caregivers. Descriptors: Cystic Fibrosis; Chronic disease; Quality of life; Health Care; Child; Teenager.RESUMEN Objetivo: evaluar la calidad de vida relacionada con la salud (QVRS) de niños y adolescentes con fibrosis quística. Método: se trata de un estudio cuantitativo y transversal, realizado con niños y adolescentes. Se recogieron los datos en el ambulatorio semanalmente con el instrumento DISABKIDS® en la perspectiva de los individuos (Self) y de sus padres o cuidadores (Proxy). Se realizó el análisis estadístico por técnicas descriptivas en el software SPSS 20, siendo construidas tablas de frecuencias. Resultados: se constituyó la muestra por 11 sujetos. Se registró que la mayoría (63,6%) de los acompañantes era de madres con edad promedio de 41 años. Se apunta, en la dimensión impacto, por el Self, una media de 66,4 y, en la Proxy, de 69,5; sin embargo, en la dimensión tratamiento, por la versión Self, se obtuvo un promedio de 72,4 y, por Proxy, de 66,9. Se clasificó la mayoría de los pacientes con buena condición clínica (45,4%) de acuerdo con la puntuación de Shwachman-Kulczyki. Conclusión: se concluye que los niños y adolescentes perciben una mejor QVRS en cuanto al tratamiento y una peor QVRS en cuanto al impacto de la enfermedad, cuando comparados a sus padres / cuidadores. Descriptores: Fibrosis Quística; Enfermedad Crónica; Calidad de Vida; Atención a la Salud; Niño; Adolescente.

scholarly journals Is FEV1 associated with quality of life in children with cystic fibrosis? An original article

2019 ◽  
Vol 6 (1) ◽  
pp. e06-e06
Author(s):  
Rohola Shirzadi ◽  
Safoura Navaei ◽  
Mohammadreza Modaresi ◽  
Farzad Masiha
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Pulmonary Function ◽  
Medical Center ◽  
Cross Sectional Study ◽  
Forced Expiratory Volume ◽  
Psychological Status ◽  
Cross Sectional ◽  
The Mean

Introduction: Cystic fibrosis (CF) is a serious genetic life-shortening disease. Quality of life (QoL) measurement related to CF children is a relatively new field of research, which includes the patient’s perspective in research and clinical practice. Objectives: This study aimed to evaluate the QoL in children with CF and its association with FEV1 (forced expiratory volume in 1 second). Patients and Methods: This cross-sectional study was carried out on 7-14 years old children with CF attending children’s medical center from March 2017 to March 2018. Throat swab cultures and spirometry evaluation was performed for all patients. FEV1 was determined and the 6-min walk test (6MWT) was conducted. The patient’s psychological status was assessed using the Persian version of pediatric QoL inventory. ANOVA, t test, and chisquare tests were used for data analysis. Results: Seventy-six subjects with the mean age of 10.49±3.18 years were studied since 59% of them (n=44) were boys. The mean total QoL was 65.34±17.73. Patients with lower pulmonary function had a lower QoL. There was a significant association between FEV1 and school and emotional functioning (P=0.005 and P=0.002, respectively). A significant association was found between SPO2 (peripheral capillary oxygen saturation) reduction after 6MWT and FEV1 decline (P=0.001). Additionally, a significant association was detected between FEV1 and the distance walked during 6MWT (P=0.030). Conclusion: Regarding the association between pulmonary function and QoL in CF patients and lower QoL score in our study, the importance of assessing pulmonary function in these patients should not be neglected.

scholarly journals 0877 Impact of Sleep-Disordered Breathing on Quality of Life in Pediatric Cystic Fibrosis

SLEEP ◽  
2020 ◽  
Vol 43 (Supplement_1) ◽  
pp. A334-A334
Author(s):  
A Shakkottai ◽  
S Z Nasr ◽  
L M O’Brien ◽  
R D Chervin
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Sleep Disordered Breathing ◽  
Causal Effect ◽  
Forced Expiratory Volume ◽  
Sleep Related Breathing Disorders ◽  
Cross Sectional ◽  
Lung Dysfunction ◽  
Disordered Breathing

Abstract Introduction The frequency of sleep-disordered breathing (SDB) may be high among children with cystic fibrosis (CF), a life-shortening, genetic disease that affects 1/3400 Caucasian live-births. Yet, the potential impact of SDB on their quality of life has not been well-studied. Methods The Pediatric Sleep Questionnaire Sleep-Related Breathing Disorders (PSQ-SRBD) Scale, a well-validated SDB screening tool, and two validated quality-of-life questionnaires, the Pediatric Quality of Life Inventory (PedsQL™) and the Cystic Fibrosis Questionnaire-Revised (CFQ-R), were administered to children 6-17 years of age with CF consecutively during a 2-week period during routine pulmonary clinic visits. Results Twenty-two children with CF and their parents completed the questionnaires. Mean age of the participants was 11.6±3.8(sd) years. Mean body mass index (BMI) percentile was 54.8±27.1%. Mean forced expiratory volume in 1 second percent predicted (FEV1 PPD) was 86.6±22.5%. Five subjects (23%) showed high risk for SDB (PSQ-SRBD Scores > 0.33). Seven additional subjects had PSQ-SRBD Scores of 0.3. Mean BMI percentile was higher among subjects with vs. without positive PSQ-SRBD Scores (66% vs. 42% respectively, p=0.03). The groups did not differ with regards to FEV1. Pearson/Spearman correlation identified negative associations between PSQ-SRBD Scores and functioning in multiple parent PedsQL domains: physical (R=-0.45, p=0.03), social (R=-0.53, p=0.01), school (R=-0.56, p=0.008); two child PedsQL domains: physical (R=-0.41, p=0.06), school (R=-0.41, p=0.06); multiple parent CFQ-R domains: physical (R=-0.44, p=0.08), respiratory (R=-0.45, p=0.07), emotional (R=-0.54, p=0.02), school (R=-0.70, p=0.002); and one child CFQ-R domain: physical (R=-0.51, p=0.01). None of these domains were associated with FEV1. Conclusion Children with CF may have SDB symptoms independent of the extent of lung dysfunction. Although the current cross-sectional data cannot prove a causal effect, they raise the possibility that the SDB itself may have adverse impact on physical, emotional, social, and school functioning. Support NIH Training Grant (F32HL145915)

scholarly journals Evaluation of the functional capacity and quality of life of children and adolescents during and after cancer treatment

2022 ◽  
Vol 40 ◽  
Author(s):  
Bruna Kuhn ◽  
Luciane Dalcanale Moussalle ◽  
Janice Luisa Lukrafka ◽  
Giana Berleze Penna ◽  
Abelardo de Oliveira Soares Júnior
Keyword(s):  
Quality Of Life ◽  
Cancer Treatment ◽  
Children And Adolescents ◽  
Functional Capacity ◽  
Post Treatment ◽  
Life Questionnaire ◽  
Cross Sectional ◽  
Percentage Difference ◽  
Hematological Cancers

ABSTRACT Objective: To evaluate the functional capacity and quality of life of children and adolescents during cancer treatment and post-treatment. Methods: Cross-sectional study of patients during cancer treatment and post-treatment, assessed by the 6-minute walk test (6MWT) and the Pediatric Quality of Life ™ questionnaire (cancer module). Results: Sixty-five patients, aged 11.2±3.5 years, mostly males (50.8%) and white (90.8%), with high incidence of hematological cancers (81.5%) participated in the study. The performance in the 6MWT was 23.1% inferior comparing the mean predicted and achieved (584.3±5 and 447.7±78.6 m, respectively). The percentage difference between the predicted and achieved 6MWT, and the different phases of cancer treatment were significantly different between patients in treatment (73.7±12.8) and post-treatment (84.5±9.1). When grouped by the different diagnoses, it was possible to observe that the distance covered by the patients with leukemia showed results closer to that predicted (80.7±11.7). Regarding the health-related quality of life questionnaire (HRQL), the child’s perception (78.0±14.56) was better than that reported by their parents (72.4±17.74). However, when we compared HRQL with the 6MWT, there was no association between them (p=0.597). Conclusions: Children and adolescents undergoing cancer treatment or post-treatment showed a 23% deficit in functional capacity. In relation to HRQL results, children’s perception was higher than that of their parents.

Glittre ADL test in eutrophic, overweight and obese elderly

2020 ◽  
Vol 21 (1) ◽  
pp. 49
Author(s):  
Augusto Baumhardt Guidoti ◽  
Ângelo Pereira Cattani ◽  
Cintia Laura De Araujo ◽  
Fernanda Beatriz Costa Delacoste ◽  
Guilherme Scotta Hentschke ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Functional Capacity ◽  
Elderly Women ◽  
Handgrip Strength ◽  
Exercise Intolerance ◽  
World Health ◽  
Chronic Obstructive ◽  
Cross Sectional ◽  
World Health Organization Quality

The Glittre ADL-test (TGlittre) has been designed and validated to measure functional capacity during daily living activities in patients with chronic obstructive pulmonary disease (COPD) but is now used in several other situations. The aim of this study was to evaluate the applicability of TGlittre in a sample of overweight and obese eutrophic elderly. This was an experimental and cross-sectional study, which included 21 elderly women, allocated by BMI, in eutrophic (n = 8), overweight (n = 6) and obese (n = 7) groups. They were assessed for functional capacity (TGlittre and 6MWT), quality of life (QOL) with the questionnaire World Health Organization Quality of Life for Older People (WHOQOL-OLD) and handgrip strength (HGS). TGlittre correlated with age (p = 0.0040) and with 6MWT (p = 0.0086), but no statistical difference was found in TGlittre's performance time and the distance covered in 6MWT between groups. TGlittre did not correlate with HGS (p = 0.1493) and WHOQOL-Old (p = 0.0905). The data obtained in the present study corroborate that TGlittre is used as a functional measurement variable in the elderly population.Keywords: aged, obesity, exercise intolerance.­­­

scholarly journals EXPRESS: Association of daily physical activity with psychosocial aspects and functional capacity in patients with Pulmonary Arterial Hypertension: a cross-sectional study

2021 ◽  
pp. 204589402199995
Author(s):  
Layse Nakazato Lima ◽  
Felipe Mendes ◽  
Ilma Paschoal ◽  
Daniela Oliveira ◽  
Marcos Mello Moreira ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Pulmonary Arterial Hypertension ◽  
Arterial Hypertension ◽  
Functional Capacity ◽  
Daily Physical Activity ◽  
Cross Sectional ◽  
Pulmonary Arterial ◽  
The Mean

Pulmonary arterial hypertension (PAH) impairs exercise tolerance and daily physical activity (PA). Aside from the hemodynamic limitations, physical, cognitive and emotional factors may play a relevant and as yet unexplored role. We investigated whether there is an association between the PA level and psychological disorders, health-related quality of life, and daily activities. We also searched for an association of the PA level with clinical factors and functional capacity. This was an analytical, cross-sectional, observational study conducted in a Brazilian University Hospital. Twenty stable PAH subjects wore an accelerometer for a week and completed an activity diary. They answered the quality of life questionnaire (SF-36), as well as the anxiety and depression scale (HADS), and the Manchester Respiratory Activities of Daily Living questionnaire (MRADL). Transthoracic echocardiography, the 6-Minute walk test (6MWT), the 1-minute sit-to-stand test (STST), and spirometry were performed. For statistical analysis we used Chi-square tests or Fisher's test as appropriate and the Mann-Whitney test to compare numerical values between two groups. The relationship between the parameters was assessed using the Spearman correlation test. The mean age was 44.3 years, 80% were women, 80% had idiopathic PAH, and 20% had connective tissue disease . The mean daily step count was 4,280 ± 2,351, and the mean activity time was 41.6 ± 19.3 minutes. The distance covered (6MWT) was 451.5 m, and the number of movements (1-STST) was 23.8. Thirty percent scored positive for anxiety, and 15% for depression (HADS). There was a significant correlation between accelerometer data and walking distance (6MWT), number of movements (1-STST), level of daily physical activity (MRADL), and depression symptoms. Our findings support the hypothesis that other aspects beyond physical and hemodynamic ones might impact the daily physical activity of patients with PAH.

Quality of Life in Chilean Transgender Children and Adolescents

2021 ◽  
Author(s):  
Carolina Mendoza ◽  
Helena Poggi ◽  
Mónica Flores ◽  
Cristóbal Morales ◽  
Alejandro Martínez-Aguayo
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
School Environment ◽  
Social Acceptance ◽  
Well Being ◽  
Psychosocial Health ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Psychological Well Being

Introduction: Transgender (TG) children and adolescents experience problems in school as well as with family and social relationships that can adversely affect their physical and psychosocial health and impair their quality of life (QOL). This study aims to assess health-related quality of life (HRQOL) in TG children. Methods: We performed a cross-sectional study comparing HRQoL in gender nonconforming (Trans) and gender conforming (CIS) children and adolescents using the Spanish version of KIDSCREEN-52 in 120 Chilean Trans and CIS children (aged 8–18 years) and their parents. All scores were standardized according to the KIDSCREEN manual. Results: Among the 100 questionnaires answered, 38 corresponded to children and adolescents aged 8.4–18 years. Twenty-one of them were TG (71% trans males) and 17 were CIS (76% females). Sixty-two parents answered the questionnaires: 33 from families of TG children (PTrans) and 29 from families of CIS children (PCis). Trans children had lower HRQOL scores in all domains compared to CIS children. The lowest-scoring domains for TG children were “Moods and Emotions”, “Psychological Well-Being” and “Social Acceptance”, and the highest-scoring domain was “School Environment”. The PTrans group had significantly higher scores than the Trans group for 3 of the 10 domains: “Psychological Well-Being”, “Moods and Emotions”, and “Parent Relations and Home Life”. Conclusion: Our results revealed that TG children and adolescents have lower QOL than their CIS counterparts, especially regarding items related to mental health. Furthermore, their parents may underestimate their well-being, confirming the vulnerability of the TG population. This finding underlies the need to perform early assessments of QOL for early detection and intervention in aspects that could deteriorate their quality of life.

Quality of life of children and adolescents with chronic kidney disease: a cross-sectional study

2018 ◽  
Vol 104 (2) ◽  
pp. 134-140 ◽  
Author(s):  
Anna Francis ◽  
Madeleine S Didsbury ◽  
Anita van Zwieten ◽  
Kerry Chen ◽  
Laura J James ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Children And Adolescents ◽  
Family Income ◽  
Cross Sectional Study ◽  
Kidney Transplants ◽  
Cross Sectional ◽  
Factors Associated

ObjectiveThe aim was to compare quality of life (QoL) among children and adolescents with different stages of chronic kidney disease (CKD) and determine factors associated with changes in QoL.DesignCross-sectional.SettingThe Kids with CKD study involved five of eight paediatric nephrology units in Australia and New Zealand.PatientsThere were 375 children and adolescents (aged 6–18 years) with CKD, on dialysis or transplanted, recruited between 2013 and 2016.Main outcome measuresOverall and domain-specific QoL were measured using the Health Utilities Index 3 score, with a scale from −0.36 (worse than dead) to 1 (perfect health). QoL scores were compared between CKD stages using the Mann-Whitney U test. Factors associated with changes in QoL were assessed using multivariable linear and ordinal logistic regression.ResultsQoL for those with CKD stages 1–2 (n=106, median 0.88, IQR 0.63–0.96) was higher than those on dialysis (n=43, median 0.67, IQR 0.39–0.91, p<0.001), and similar to those with kidney transplants (n=135, median 0.83, IQR 0.59–0.97, p=0.4) or CKD stages 3–5 (n=91, 0.85, IQR 0.60–0.98). Reductions were most frequent in the domains of cognition (50%), pain (42%) and emotion (40%). The risk factors associated with decrements in overall QoL were being on dialysis (decrement of 0.13, 95% CI 0.02 to 0.25, p=0.02), lower family income (decrement of 0.10, 95% CI 0.03 to 0.15, p=0.002) and short stature (decrement of 0.09, 95% CI 0.01 to 0.16, p=0.02).ConclusionsThe overall QoL and domains such as pain and emotion are substantially worse in children on dialysis compared with earlier stage CKD and those with kidney transplants.

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