scholarly journals TREATMENT ADHERENCE AMONG CHILDREN AND ADOLESCENTS IN A CYSTIC FIBROSIS REFERENCE CENTER

2020 ◽  
Vol 38 ◽  
Author(s):  
Bianca Sampaio Bonfim ◽  
Valmir Machado de Melo Filho ◽  
Fernanda Matos Fontenelle ◽  
Edna Lúcia Souza

ABSTRACT Objective: To evaluate the level of self-referenced treatment adherence (TA) and its association with clinical and sociodemographic variables in patients with cystic fibrosis assisted at a reference center, as well as compare the level of self-referenced TA with that presumed by the multidisciplinary team. Methods: This is a cross-sectional study that included children and adolescents aged between 0-20 years with cystic fibrosis. Adolescents older than 14 years or their guardians, when younger than 14 years old, were interviewed using a standardized questionnaire. Professionals from the multidisciplinary clinic filled out another form with their impressions of the patients’ TA. Clinical and laboratory data were obtained in the medical records. The TA was considered satisfactory if the total adherence index (TAI) was equal or higher than 80%. Results: 53 patients were included with a median age of 112 months. The mean TAI was 83.2%. The mean TAIs for dornase alfa, pancreatic enzymes, continued use of inhaled tobramycin, vitamins supplements, nutritional supplements and dietary orientation was respectively: 86.1; 96.6; 78.6; 88.1; 51.8 and 78%. Children younger than 14 years presented better TA (p=0.021). The correlation between the self-referenced TA and the one presumed by the multidisciplinary team ranged from 0,117 to 0.402, being higher for Psychology and Nutrition professionals. Conclusions: The TAI was high particularly among children younger than 14 years. There was a positive correlation between the self-referenced TA and the one presumed by the Psychology (p=0.032) and the nutrition (p=0.012) professionals.

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
M. A. Arden ◽  
M. Hutchings ◽  
P. Whelan ◽  
S. J. Drabble ◽  
D. Beever ◽  
...  

Abstract Background Cystic fibrosis (CF) is a life-limiting genetic condition in which daily therapies to maintain lung health are critical, yet treatment adherence is low. Previous interventions to increase adherence have been largely unsuccessful and this is likely due to a lack of focus on behavioural evidence and theory alongside input from people with CF. This intervention is based on a digital platform that collects and displays objective nebuliser adherence data. The purpose of this paper is to identify the specific components of an intervention to increase and maintain adherence to nebuliser treatments in adults with CF with a focus on reducing effort and treatment burden. Methods Intervention development was informed by the Behaviour Change Wheel (BCW) and person-based approach (PBA). A multidisciplinary team conducted qualitative research to inform a needs analysis, selected, and refined intervention components and methods of delivery, mapped adherence-related barriers and facilitators, associated intervention functions and behaviour change techniques, and utilised iterative feedback to develop and refine content and processes. Results Results indicated that people with CF need to understand their treatment, be able to monitor adherence, have treatment goals and feedback and confidence in their ability to adhere, have a treatment plan to develop habits for treatment, and be able to solve problems around treatment adherence. Behaviour change techniques were selected to address each of these needs and were incorporated into the digital intervention developed iteratively, alongside a manual and training for health professionals. Feedback from people with CF and clinicians helped to refine the intervention which could be tailored to individual patient needs. Conclusions The intervention development process is underpinned by a strong theoretical framework and evidence base and was developed by a multidisciplinary team with a range of skills and expertise integrated with substantial input from patients and clinicians. This multifaceted development strategy has ensured that the intervention is usable and acceptable to people with CF and clinicians, providing the best chance of success in supporting people with CF with different needs to increase and maintain their adherence. The intervention is being tested in a randomised controlled trial across 19 UK sites.


2010 ◽  
Vol 18 (1) ◽  
pp. 139-142 ◽  
Author(s):  
Tainá Maues Peluci Pizzignacco ◽  
Débora Falleiros de Mello ◽  
Regina Aparecida Garcia de Lima

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.


2004 ◽  
Vol 18 (6) ◽  
pp. 445-462 ◽  
Author(s):  
Jüri Allik ◽  
Kaia Laidra ◽  
Anu Realo ◽  
Helle Pullmann

The Estonian NEO‐FFI was administered to 2650 Estonian adolescents (1420 girls and 1230 boys) aged from 12 to 18 years and attending 6th, 8th, 10th, or 12th grade at secondary schools all over Estonia. Although the mean levels of personality traits of Estonian adolescents were quite similar to the respective scores of Estonian adults, there was a developmental gap in Agreeableness and Conscientiousness. Three of the five personality dispositions demonstrated a modest cross‐sectional change in the mean level of the trait scores: the level of Openness increased and the levels of Agreeableness and Conscientiousness decreased between 12 and 18 years of age. Although the five‐factor structure of personality was already recognizable in the sample of 12‐year‐old children, it demonstrated only an approximate congruence with the adult structure, suggesting that not all children of that age have developed abilities required for observing one's own personality dispositions and for giving reliable self‐reports on the basis of these observations. The self‐reported personality trait structure matures and becomes sufficiently differentiated around age 14–15 and grows to be practically indistinguishable from adult personality by the age of 16. Personality of adolescents becomes more differentiated with age: along with the growth of mental capacities the correlations among the personality traits and intelligence become smaller. Copyright © 2004 John Wiley & Sons, Ltd.


2019 ◽  
Vol 41 (2) ◽  
pp. 193-199
Author(s):  
Luciana Satiko Sawamura ◽  
Gabrielle Gomes de Souza ◽  
Juliana Dias Gonçalves dos Santos ◽  
Fabíola Isabel Suano-Souza ◽  
Anelise Del Vecchio Gessullo ◽  
...  

Abstract Objective: To describe the frequency of albuminuria in overweight and obese children and adolescents and to relate it to the severity of obesity, pubertal staging, associated morbidities and the glomerular filtration rate. Method: Cross-sectional study including 64 overweight and obese children and adolescents between 5 and 19 years of age. Data collected: weight, height, waist circumference and systemic arterial pressure. Laboratory tests: lipid profile; glycemia and insulin, used to calculate the Homeostasis Model Assessment (HOMA-IR); C-reactive protein; glutamic-pyruvic transaminase and albuminuria in an isolated urine sample (cutoff <30 mg/g). Creatinine was used to calculate the estimated glomerular filtration rate (eGFR, mL/min/1.73 m2). Results: The mean age was 11.6 ± 3.4 years, 32 (50%) and 29 (45.3%) were male and prepubertal. Forty-six (71.9%) had severe obesity. The frequency and median (min/max) of the observed values for albuminuria (> 30 mg/g) were 14 (21.9%) and 9.4 mg/g (0.70, -300.7 mg/g). The mean eGFR was 122.9 ± 24.7 mL/min/1.73 m2. There was no significant correlation between body mass index, pubertal staging, insulin and HOMA-IR with albuminuria values and neither with eGFR. Children with albuminuria tended to have higher values of diastolic blood pressure (75.0 ± 12.2 vs. 68.1 ± 12.4, p = 0.071). Conclusion: Albuminuria, although frequent in children and adolescents with obesity, was not associated with other morbidities and the glomerular filtration rate in these patients.


2019 ◽  
Vol 37 (4) ◽  
pp. 435-441
Author(s):  
Amanda Oliva Gobato ◽  
Ana Carolina Junqueira Vasques ◽  
Antonio Fernando Ribeiro ◽  
Roberto Massao Yamada ◽  
Gabriel Hessel

ABSTRACT Objective: To determine the prevalence of hepatic steatosis (HS) in children and adolescents with cystic fibrosis (CF) and associate it with nutritional status. Methods: Cross-sectional study with children and adolescents with CF diagnosis. Weight and height were used to calculate the body mass index (BMI) and subsequent classification of the nutritional status. The midarm circumference (MAC), triceps skinfold thickness (TSF) and midarm muscle circumference (MAMC) were used to evaluate body composition. Abdominal ultrasonography was performed for diagnosis of HS. The statistical tests used were Student’s t test, Mann-Whitney test and chi-square test with significance level of 5%. Results: 50 patients with CF were evaluated, 18 (36%) were diagnosed with HS (Group A) and 32 (64%) without HS (Group B). The mean age of Group A was 13,2±4,9 years old and Group B 11,7±4,9; for BMI, the value for Group A was 18,0±4,1 and Group B was 15,7±3,8; the TSF of Group A was 8,4±3,5 mm and Group B was 7,0±2,5 mm. For these variables, there was no significant difference between the groups. The mean of MAC and MAMC differed significantly between the groups, being higher in the HS group, with p values of 0,047 and 0,043. Conclusions: The frequency of HS in patients with CF is high and it is not related to malnutrition, according to the parameters of BMI, TSF and MAMC. The values of MAC and MAMC indicated a greater reserve of muscle mass in patients with HS.


2020 ◽  
Vol 10 (3) ◽  
pp. 25-28
Author(s):  
Ashish Kumar Bhattarai ◽  
Prabin Kumar Karki

Background: Medical education is one of the toughest education systems where the stu­dents are under intense physical and mental pressure especially during the exam time. They have information of different drugs that can cope with their medical conditions and also aware of different cognitive enhancers. Self-medication results in wastage of resource, ad­verse effects, drug dependence and increase chances of resistance of pathogens. Hence, this study was undertaken to determine the knowledge, attitude and practice of irrational drug use among the medical students during the exam time. Methods: This was descriptive cross-sectional using semi-structured questionnaire in the one of the medical school located inside Kathmandu Valley. A total of 90 students participated in the study. The data was analyzed with SPSS version 20, by using descriptive statistics. Results: Among the total respondents,20 (17.7%) were practicing self-medication during the exam time. Of the participants who practiced the self-medication, most common drug used was NDAIDs. Most of the respondents 87(96.7%) were aware of the possible adverse consequences. About 75(83.3%) participants thought the self-medication practice during the exam time is acceptable while 15(16.7%) regarded this as unacceptable. Conclusions: Although low incidence of self-medication was found among students during exam time, the false prerogative of being medical students can lead to meager practice and awful con­sequences.


2017 ◽  
Vol 41 (S1) ◽  
pp. s305-s306
Author(s):  
C. Sukasem

BackgroundAtypical anti-psychotics have been found to be associated with hyperuricemia. The aims of this study were to determine the prevalence of hyperuricemia and metabolic adverse events in children and adolescents with ASD treated with risperidone.MethodsIn this cross-sectional study, we recruited 127 Thai ASD children and adolescents aged 3–20 years receiving risperidone for more than 4 weeks. The clinical data and laboratory data were obtained and analyzed. Hyperuricemia was defined as serum uric acid > 5.5 mg/dL.ResultsHyperuricemia was present in 57.48% of total ASD patients treated with risperidone. Uric acid levels were significantly higher in adolescents as compared to children. Uric acid levels correlated with risperidone dose (P = 0.01), duration of treatment (P < 0.0001), BMI (P < 0.0001), waist circumference (P = 0.003), triglyceride (TG; P < 0.0001), triglycerides/high-density lipoprotein cholesterol ratio (TG/HDL-C; P < 0.0001), insulin (P = 0.04), homeostatic model assessment index (HOMA-IR; P = 0.03), high-sensitivity CRP (hs-CRP; P < 0.0001), and leptin levels (P < 0.0001). HDL-C and adiponectin levels were negatively correlated with uric acid levels (P < 0.0001). In multiple regressions analysis, age, BMI, TG/HDL-C, and adiponectin level remained significantly associated with uric acid levels (P < 0.0001).ConclusionHyperuricemia may play a role in metabolic adverse effects in children and adolescents with ASD receiving high dose and/or long-term treatment with risperidone.Disclosure of interestThe author has not supplied his/her declaration of competing interest.


2021 ◽  
pp. 146531252110075
Author(s):  
Asma Keshtgar ◽  
Susan J Cunningham ◽  
Elinor Jones ◽  
Fiona S Ryan

Objectives: To investigate and compare the extent of shared decision making (SDM) in orthodontics from the perspective of patients, clinicians and independent observers. Design: A cross-sectional, observational study. Setting: NHS teaching hospital. Participants: A total of 31 adult patients and their treating clinicians were included in the study. Methods: The extent of SDM in new patient orthodontic consultations was measured using three versions of a validated instrument: the self-administered patient dyadic-OPTION scale; the self-administered clinician dyadic-OPTION scale; and an independent observer-rated OPTION12 scale. Patients and clinicians completed the 12-item dyadic-OPTION questionnaire independently at the end of the consultation to rate their perceived levels of SDM. The consultations were also audio-recorded and two calibrated raters independently rated the extent of SDM in these consultations using the OPTION12 scale. Results: There was excellent inter-rater reliability between the two independent raters using the OPTION12 scale (intraclass correlation coefficient (ICC) = 0.909). The mean patient, clinician and independent observer OPTION scores for SDM were 90.4% (SD 9.1%, range 70.8% to 100%), 76.2% (SD 8.95%, range 62.5% to 95.8%) and 42.6% (SD 17.4%, range 13.5% to 68.8%), respectively. There was no significant correlation between the OPTION scores for the three groups (ICC = −0.323). Conclusions: The results showed that generally high levels of SDM were perceived by patients and clinicians but lower levels of SDM were scored by the independent observers. However, it could be argued that the patient’s perception of SDM is the most important measure as it is their care that is affected by their involvement.


2020 ◽  
Vol 9 (2) ◽  
Author(s):  
Fereidoun Jahangir ◽  
Esmaeil Kavi ◽  
Behnam Masmouei ◽  
Mohammad-Rafi Bazrafshan ◽  
Hamed Delam ◽  
...  

Background: Diabetes is a global epidemic with serious complication and there is a clear need for paying special attention to self-management as the cornerstone to optimal control of the disease. Objectives: This study aimed to assess the self-management status and its correlation to disease control indicators in people with diabetes. Methods: In a descriptive cross-sectional study, 220 patients were selected from the list of the referred patients available in Lamerd public health network from December 2014 to June 2015. In the first step, data about demographic information and disease control were collected from the patients’ records. In the second step, the self-management status of each patient was assessed by the Diabetes Self-Management Questionnaire developed by Schmitt et al. To analyze the data, independent sample t-test and Pearson correlation coefficient were used. Results: The mean age of the male and female participants was 56.43 ± 13.50 and 56.46 ± 10.49 years old, respectively. The mean duration of the disease was 6.67 ± 4.72 years for men and 7.07 ± 5.30 years for women. Twenty-one (25.9%) men and 60 (43.7%) women had a history of smoking. The results of the Pearson correlation coefficient showed that there was an inverse and statistically significant relationship between diabetes self-management status and weight, body mass index (BMI), waist circumference, glucose tolerance test (GTT), LDL, and cholesterol. The results of the t-test did not show significant differences between the level of HbA1C (HbA1C7) and self-management scores of the patients (P > 0.05). Conclusions: Patients with better self-management status were in a better disease control condition with respect to weight, BMI, waist circumference, GTT, LDL, and cholesterol levels. Special attention to the control and management of LDL, cholesterol, HbA1C, BMI, and blood pressure levels is recommended in planning for these patients.


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