Adhesion to Treatment by Children With Congenital Hypothyroidism: Knowledge of Caregivers in Bahia State, Brazil

Abstract

Objective: To investigate knowledge of caregivers of children with congenital hypothyroidism (CH), followed in a public reference service, as well as their associations with treatment adherence. Methods: Exploratory, descriptive, cross-sectional study with convenience sample. Medical records of 158 patients diagnosed with congenital hypothyroidism were analyzed, and data were evaluated by applying a previously prepared questionnaire to caregivers from 2014 to 2016. Statistical analysis used the chi-square and the Spearman’s correlation tests, being significant p-value ≤0.05. Results: Females were predominant among caregivers (94.3%), with a mean age of 31 years, from inland cities (77.8%). There was a predominance of socioeconomic class C (59.5%) and incomplete primary education (35.7%). More than half of patients (53.2%) with CH had an adequate hormonal control. Approximately one third of caregivers had poor knowledge (37.3%) or was unaware (24.1%) about the meaning of congenital hypothyroidism. The low knowledge level of the disease was observed to be related to caregivers’ educational level (p=0.004). Conclusions: Lack of education of caregivers was a barrier to be faced when monitoring children with CH. This reality requires greater attention from health professionals to ensure that they use clear language when giving instructions to caregivers, and that caregivers have adequately understood the proposed recommendations.

An Overview on Different L-Thyroxine (l-T4) Formulations and Factors Potentially Influencing the Treatment of Congenital Hypothyroidism During the First 3 Years of Life

“…Good therapeutic management practices appear to be of particular importance to ensure optimal results in terms of neuromotor and mental development, due to the THs-dependent processes of brain development in the first years of life. Professionals should provide clear explanations and instructions to caregivers to improve adherence to treatment ( 9 , 34 , 35 ). It is critical that families comprehend that treatment is essential for the best patient outcomes.…”

“…Screening programs for CH are in place in many countries, allowing for the prompt initiation of treatment during the first months of life, frequently before clinical signs and symptoms appear ( 1 ). Generally, the recommended period for collecting blood samples for thyroid screening is between the 3 rd and 5 th day of life ( 9 ). The detection of a suspected thyroid dysfunction should be confirmed with secondary tests, which should be carried out promptly, ideally within the second week of life.…”

Neuropsychological Alterations in Patients with Congenital Hypothyroidism Treated with Levothyroxine: Linked Factors and Thyroid Hormone Hyposensitivity

“…There is a positive correlation between the socioeconomic conditions of the family and the educational level of the mother with the development of the children’s language and executive functions. As the family’s income and the mother’s education level increase, the child obtains higher IQ scores [ 70 , 71 , 101 ]. Adolescents with a diagnosis of agenesis and low socioeconomic status have a higher risk of suffering an adverse outcome, showing a difference of up to 10 points in the IQ score [ 30 ].…”

“…Over a third of the caregivers had little knowledge of the disease (37.3%), and approximately a quarter were unaware of the meaning of CH (24.1%). More than half of the study group (59.5%) was classified as working class, while 35.7% had not completed elementary school [ 101 ]. These data suggest that a high proportion of patients with CH live in disadvantaged environments with caregivers who have little knowledge of the disease, increasing the risk of neuropsychological sequelae, especially in IQ.…”

Congenital hypothyroidism: A theoretical approach

“…Treatment involves hormone replacement with levothyroxine, usually for life. It is important to start treatment as early as possible to prevent possible development and growth problems (BRITO, 2021), preferably within the first 15 days of life.…”