Treatment Adherence Among Children and Adolescents in a Cystic Fibrosis Reference Center

Abstract

<jats:p>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.</jats:p>

Telerehabilitation in Children and Adolescents with Cystic Fibrosis: A Scoping Review

“…The good adherence of children and adolescents to these programmes demonstrates their acceptability and allows us to predict the potential of e-health interventions for solving problems present in these chronically ill patients. Some studies have observed that adherence is unsatisfactory, especially in certain therapeutic modalities, such as nutritional guidelines, inhalation therapy, and respiratory physical therapy [1,7,9,33].…”

Telefisioterapia durante a COVID-19: Dificuldades e barreiras de familiares e indivíduos com fibrose cística

“…Sendo assim, a presente pesquisa justificou-se pela demanda de pacientes que necessitavam desse modelo assistencial, visto a urgência em manter o tratamento fisioterapêutico aos indivíduos com FC, uma vez que a não adesão ao manejo nessa doença contribui para o prolongamento do tempo de internação, maior ocorrência de exacerbações pulmonares e perda da função pulmonar, sendo esta sua principal causa de óbito. 12,13,14 Desse modo, buscou-se colher informações e feedback de pacientes e seus responsáveis quanto a esta nova modalidade da fisioterapia, visando melhorar as principais insatisfações e adequar o programa ao perfil de cada indivíduo, no intuito de facilitar a adesão e contribuir na manutenção da QV. 13,14 No entanto, conforme resultado apresentado, poucos participantes retornaram com as respostas, o que comprometeu, inclusive, a condução do método proposto e a captação dos resultados da investigação.…”

“…12,13,14 Desse modo, buscou-se colher informações e feedback de pacientes e seus responsáveis quanto a esta nova modalidade da fisioterapia, visando melhorar as principais insatisfações e adequar o programa ao perfil de cada indivíduo, no intuito de facilitar a adesão e contribuir na manutenção da QV. 13,14 No entanto, conforme resultado apresentado, poucos participantes retornaram com as respostas, o que comprometeu, inclusive, a condução do método proposto e a captação dos resultados da investigação.…”

Adherence to the treatment regimen and causes of its violation in children with cystic fibrosis

“…Водночас показники прихильності щодо рекомендацій МДТ серед педіатрич-ного населення досить низькі, незважаючи на несприятливі наслідки недотримання приписаної дієти. Але дослідженнями різних хронічних захворювань у дітей, які потребують суворого дотримання рекомендацій МДТ, встановлено, що зміна харчування є однією з найтяжчих змін поведінки [1,4,5,7,8,12,17,19,[20][21][22][23]. Ці труднощі обумовлюють необхідність додаткового консультування поведінковими педіатрами та психологами.…”

“…Незважаючи на важливість високої прихильності до приписаної дієти, кількість досліджень щодо дотримання специфічних дієтичних рекомендацій дітьми з МВ обмежена [4,6,7,17,20,21].…”