Study design:
An observational cross-sectional study was conducted in the city of Juiz de Fora, Minas Gerais, Brazil.
Participants:
All children and adolescents between the ages of 2 and 18 years who had a diagnosis of cancer were invited to participate. They could be or not in the medical treatment phase between August 2018 and May 2019. Contact was made with the local children and adolescent cancer treatment institution, where a list with the data of all assisted patients was obtained. This study was approved by the Committee on Ethics in Research with Human Beings of the Federal University of Juiz de Fora (CAAE: 82561518.6.0000.5147) and all participants and their guardians signed the free and informed consent form. All methods were performed in accordance with the relevant guidelines and regulations (e.g. Declaration of Helsinki).
Those that had a non-cancer-related neurological syndrome, a diagnosis of depression and any psychological diagnosis, who refused to answer the questionnaires and those patients who did not know of the presence of the cancer, were excluded.
Setting and control variables:
Telephone contact was made with all the possible participants and an interview date was scheduled in the place of best convenience for the family. The participant and their caregiver who agreed to participate in the survey filled out a personal and environmental factsheet with the following control variables, stratified for analysis in the following categories:
Sex: female or male;
Age: below 8 years, or above 8 years old - The age of 8 years old was used as a cut-off age to stratify the participants because this age was close to the mean age of the participants and provided a more equal distribution between ages of the participants;
Ethnicity: white or non-white;
Type of cancer: solid (osteosarcomas, wilms sarcoma, neuroblastomas, cerebral tumors, liver tumor, mediastinal tumor) or non-solid (leukemias and lymphomas;
Current treatment time: ≤ 1 year or > 1 year
Treatment phase: treatment or non-treatment phase – Treatment phase: the child or adolescent had to receive one or more types of treatments (chemotherapy, radiotherapy, surgery); and Non-treatment phase: to be assigned to the non-treatment phase the participant should not be receiving any venous chemotherapy, radiotherapy, or surgery; and children and adolescents that had finished treatment, but continued to do the control through exams and were constantly evaluated by the medical team for up to 5 years after treatment were also assigned to this group. .
Type of treatment: chemotherapy, radiotherapy, surgery (yes or no);
Physical therapy: yes or no; and
Type of assistance: public health system, or no public health system.
Dependent Variable:
To evaluate the functional ability of the participants, the Pediatric Evaluation of Disability Inventory - Computer Adaptive Test (PEDI-CAT) questionnaire was performed [22]. This questionnaire is translated and validated into the Portuguese language [23].
The PEDI-CAT is composed of four domains: daily activities, mobility, social/cognitive and responsibility [22]. This instrument aims to provide a detailed description of the individual's performance and to document individual changes and the progress of the functional skills acquired after an intervention. PEDI-CAT is not a performance-based "test," but rather a large bank of 276 functional activities acquired during childhood and adolescence. The application requires a computer with the instrument software installed and can be self-administered by the parents or caregivers, or through an interview conducted by a professional with the parents to ensure understanding of the information for each item [22].
Four domains are displayed, where each domain is autonomous and can be administered alone or with the other domains. Scaled scores in points are a way of looking at the difficulties the child has and progressing in skills over time. In the domains of daily activities, mobility and social/cognitive, the score is based on an ordinal scale of four points with different levels of difficulty. The responsibility domain classifies items on a five-point scale, describing the sharing of responsibility between the caregiver and the child or adolescent in the completion of each item. For the four domains, the respondent should choose the option that best describes the child's role for each item. If the respondent is not sure, there is an option to respond, "I do not know" [22].
Normative scores based on the chronological age of the child were used in this study. Scores between 30 and 70 are considered adequate according to the age range of the child and/or adolescent [22]: the scores were categorized into normal (score ≥30) and inferior performance (score <30).
Statistical analysis
Descriptive analyses of the sample regarding the control variables were presented. Normality data was checked with Kolmogorov-Smirnov analysis and not confirmed. In addition, the mean, standard deviation, confidence interval and standard error of measurement of the PEDI-CAT normative score of each domain was calculated.
A logistic regression analysis was used to verify the association of functional ability with socioeconomic, demographic, type of cancer, type and stages of treatment, physical therapy and type of health care factors. The univariate logistic regression analysis was performed for each functional domain of the PEDICAT, and all variables with a p-value inferior to 0.20 were eligible for multivariable analysis. For the final model of logistic regression, the variable was considered significant when it reached the level of significance below 0.05. Statistical Package for Social Sciences (SPSS, v. 23, 2018) was used for all analysis.