Remote screening protocol for functioning and contextual factors (e-Followkids) in Brazilian children with biological risk in the first 2 years: a longitudinal prospective study

doi:10.21203/rs.3.rs-4613460/v1

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Study protocol

Remote screening protocol for functioning and contextual factors (e-Followkids) in Brazilian children with biological risk in the first 2 years: a longitudinal prospective study

https://doi.org/10.21203/rs.3.rs-4613460/v1

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Background

Children with biological risk may experience developmental delays, even in the absence of brain injury. Identifying warning signs and knowledge of contextual factors are vital to favor intervention. Telehealth can aid in screening by providing access for populations that face physical and social barriers. As such, the aim of this study was to describe the e-Followkids screening protocol and how its feasibility will be assessed.

Methods

A multicentric longitudinal prospective study with 50 caregivers of children born with some form of biological risk: preterm, low birth weight or perinatal complications. Screening will be conducted remotely at 12, 18 and 24 months old, using internationally recognized instruments with valid psychometric properties. Functional skills will be measured via the Pediatric Evaluation of Disability Inventory Computer Adaptive Test and participation by Young Children's Participation and Environment Measure. Contextual factors will be analyzed using the Child’s Context questionnaire, the environment portion of each section of the YC-PEM, Social Support Scale, the physical dimension of the Affordances in the Home Environment for Motor Development scale, sociodemographic data, and the Survey of Well-being of Young Children. The data will be collected by filling out forms, telephone interviews or video calls.

Discussion

The e-Followkids protocol could contribute to identifying possible signs of limitations and guiding referrals to specialized intervention.

Child development

risk factors

follow-up

remote or screening assessment

environment

Functioning is defined as the positive interaction between different health components and contextual factors. Individuals with preserved physiological functions and body structures in facilitating environments are better able to participate in everyday activities. On the other hand, disability can be assessed in terms of deficiencies, activity limitations and restricted participation, especially when children are exposed to environments with physical, social or attitudinal barriers (1). This interaction is dynamic and multidirectional and could affect long-term health (2–5), particularly in children born with biological risks such as prematurity, low birth weight, admission to the Neonatal Intensive Care Unit (NICU), and perinatal complications (6–8).

Although these children have no brain damage, they are susceptible to developmental delays (4, 9, 10). The early stress experienced by these children can cause changes in monoaminergic systems (11), compromising the optimal functioning of the nervous system and, consequently, adaptative behavior (12). Thus, preterm children may exhibit limitations in activities that require adaptations to the environment (13) which, when associated with environmental barriers, may result in restricted participation (14).

Studies have identified motor skill limitations in newborns with biological (15–20, 9) cognitive (21) and social risks (22–25), in addition to restricted participation in daily activites (26, 27, 14). Despite evidence of developmental changes, longitudinal follow-up in the first two years of life is scarce, especially at 12, 18 and 24 months old, when the greatest environmental exploration occurs due to acquiring and refining mobility (28, 11), as well as greater social interaction (29, 30) and increased autonomy (31). This is important because development is a continuous multifactorial process across multiple aspects related to its domains (32).

Developmental changes can be minimized when identified and monitored to enable timely intervention (33, 34). However, factors such as lengthy assessment times (35), lack of space, appropriate materials and qualified professionals (36), difficulty accessing health services (37), and the shortage of validated tools to assess children under three years old (38) are barriers to identifying these changes. Limited access to health services is a major barrier, particularly in large and low or middle-income countries such as Brazil. This became even more evident during the COVID-19 pandemic, when adjustments in healthcare provision were necessary (39, 40).

Telehealth was widely used as a health provision method during the COVID-19 pandemic (41, 42). According to the World Health Organization (WHO), telehealth is the provision of health services using information and communication technology. Telehealth interventions are often more collaborative and accessible and require less time and effort than conventional in-person strategies.

Studies have shown that telehealth is feasible as a home-based intervention for children with biological risk in the first years of life (43, 44). Remote assessment protocols were implemented during this period, including physical, social, cognitive, nutrition, sleep, sensory-motor and communication assessment in children at 12 (45, 46) and 18 months old (46). Additionally, some studies have collected sociodemographic, clinical and environmental data (46).

Although some studies have used telehealth to evaluate children with biological risk, none were found in the literature that assessed the feasibility of a completely remote screening protocol that monitors biopsychosocial factors and the impact of the relationship between them in the first two years of life. This is important because it provides a reliable screening system that monitors child development while considering potential physical and social barriers.

As such, this study aimed to describe the so-called e-Followkids protocol, which includes functional screening in children with biological risk at 12, 18 and 24 months old, identify contextual factors that may impact each age group, and explain how the feasibility of the protocol will be evaluated.

Study Design

The study with the e-Followkids protocol is multicentric, longitudinal and prospective, and will assess the development of functioning in young children remotely, according to the International Classification of Functioning, Disability and Health (ICF) (1). It will be conducted in accordance with the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) (47) guidelines and the Checklist for Reporting Results of Internet E-Surveys (CHERRIES) (48) and has been approved by the Research Ethics Committees XXXX and the XXXX.

Sample size determination

Sample size was calculated a priori using G-Power software version 3.1.9.4 (49), based on the results of Burges et al. (2022), considering statistical power of 80%; effect size of 0.19 (5) and alpha of 0.05. The data were analyzed using the F statistic for repeated measures ANOVA. The calculations indicated a sample size of 46 participants; however, considering an estimated loss of 10% over time, the target sample is 50 children.

Participants

Participants will be parents/guardians and their children. For study inclusion, caregivers must reside in Brazil, be fluent in Portuguese, and have access to a mobile device (smartphone) with internet. The children must exhibit at least one of the following biological risk factors: 1) preterm birth (gestational age ≤ 33 weeks); 2) small for gestational age (SGA) (birth weight below the 10th percentile on the INTERGROWTH-21st curve) (51); 3) 5-minute Apgar score < 7; 4) complication after birth (cardiorespiratory arrest and/or oxygen therapy); and 5) NICU admission. They must also have a chronological or corrected age of 12 to 13 months at the moment of study inclusion. In the event of multiple births (twins, triplets), all the children will be included.

Exclusion criteria for the children will be the presence of only prenatal or social risk factors, any type of disability (orthopedic, visual, hearing, neurological, malformations, or congenital disorders), drug resistant epilepsy, and history of intraventricular hemorrhage and periventricular leukomalacia (grade III or IV), diagnosed by imaging tests (ultrasound or magnetic resonance imaging) and reported by caregivers, who will be required to send the imaging test results by email or WhatsApp.

Children who miss two or more assessments and those clinically diagnosed with neurological damage after the first screening session will be excluded from the study and referred for intervention. Caregivers who do not understand the protocol steps will also be excluded.

Recruitment

Purposive nonprobability cluster sampling will be used. Fifty children with biological risk will be selected via communication media (radio, television and digital platforms), and from hospitals, follow-up services and daycare centers, where posters will be displayed containing information on the protocol and the evaluator’s contact details. Caregivers interested in registering for the e-Followkids protocol will be advised to contact the evaluator via WhatsApp, Facebook, Instagram, telephone, or by scanning the QR code provided on the poster.

General procedures

After the initial contact, when information on the study and its procedures is provided, an informed consent form will be sent via Google Forms, where interested caregivers consent to take part in the protocol by marking “Yes, I agree”. The stages and order of procedures are described in Fig. 1.

After providing written informed consent, caregivers will be questioned regarding their own and their child’s pre and perinatal history for comparison against the inclusion criteria.

This will be followed by screening, performed by a physiotherapist trained to apply and score the instruments. Screening will begin when the child is 12 to 13 months old and be repeated at 18 and 24 months. This is because children typically start to walk from 12 months old onwards, exploring their environment more (16), becoming more expressive and interpersonally engaged (29, 30). The later monitoring stages will show greater autonomy in daily activities and behavior imitation becomes routine (52).

Caregivers will receive information on the stages via audio and written messages on WhatsApp or through telephone calls.

The caregivers and children will be characterized based on sociodemographic and clinical data such as household income, age, mother’s educational level (socioeconomic status based on the Brazilian Economic Classification Criteria [CCEB]) and occupation, kinship relationship between caregiver and child, place of residence, number of people residing in the home, child’s walking ability, and the presence of a diagnosis. These data will be collected using an electronic form.

The e-Followkids protocol will consist of the following steps: a) functional skills screening using an electronic form from the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT); b) assessing child participation and the environment with the Young Children's Participation and Environment Measure (YC-PEM) via a telephone or video calls; c) collecting contextual factors (environmental and personal) by filling out an electronic form. Caregivers will be given 7 days to complete the assessments, conducted when the children are 12, 18 and 24 months old. In the event of questions regarding the forms, participants will be able to contact the researcher while filling them out.

Legend

Pediatric Evaluation of Disability Inventory Computer Adaptive Test = PEDI-CAT; Young Children's Participation and Environment Measure = YC-PEM; Social Support Scale = SSS.

After screening, the feasibility of implementing the e-Followkids protocol will be evaluated.

No monetary incentives will be offered to participants. At the end of each stage, caregivers will receive a report containing the results, as well as suggestions and guidelines on activities to improve performance within the child’s environment. This will also serve as an incentive for caregivers to remain in the study. The data collected will be stored in Google Drive for approximately 10 years under password protection and only available to the study coordinator. Each participant will be assigned a numerical code to preserve their identity.

Outcome measures

The primary outcome measures of the e-Followkids protocol are the functional skills assessed by PEDI-CAT and participation analyzed by the YC-PEM, and the secondary outcomes measures are the contextual factors and feasibility of the protocol. Details and descriptions of the instruments are provided in Table 1.

Table 1

Description of the components, domains and contextual factors that will be assessed in the *e-Followkids* protocol.
Components and domains assessed	Domain description	Instruments	Screening method	Average application time
Activities Functional skills: Daily activities, mobility and social/cognitive	Daily activities: Ability to perform activities such as eating, dressing and basic care, as well as household activities and using electronic equipment. These activities require manual dexterity; Mobility: ability to move around in different environments, at home or in the community. Mobility items are related to gross motor skills such as rolling, jumping, running and carrying; Social/cognitive: ability to interact with others. This domain includes social skills such as communication, interaction, confidence, behavior, playing, attention and problem solving.		Parent-completed form provided by the instrument (speed version)	5–15 minutes
Participation Frequency and involvement in activities at home, daycare and in the community.	Frequency: Related to the presence and time available to the child for a particular activity. Involvement: Related to their engagement in this activity and the extent to which they are involved in it.		Interview conducted by telephone or video call (according to the caregiver’s preference	40–90 minutes
Environmental factors and family aspects Environmental factors and family aspects	SSS: assesses the perceived social support received during adversity. AHEMD (physical space): stimulus opportunities in and outside the home. Environment section of the YC-PEM: environmental aspects that help or hinder participation and available elements that are suitable for participation in each environment. Family aspects: (income, mother’s age and educational level). Parental attitudes: exploration opportunities offered to the child. Family interaction: relationship with mother, father and siblings at home; Social interaction: activities and social relationships with other people; Daycare: presence, attendance frequency and characteristics of the environment. Physical and Occupational Therapy: presence and frequency of these services. Physical resources: use of a walker and/or screens	SSS, AHEMD, YC-PEM (home, daycare and community) sociodemographic data, Child’s Context questionnaire (developed for this study). SSS, AHEMD, YC-PEM (home, daycare and community) sociodemographic data, Child’s Context questionnaire (developed for this study).	Self-completed electronic form Self-completed electronic form	20–30 minutes 20–30 minutes
Personal factors SWYC checklists and motivational aspects	BPSC checklist: behavioral aspects of children under 18 months old. PPSC checklist: behavioral aspects of children between 18 and 65 months and 31 days old. Motivational aspects: characteristics such as children’s enjoyment and persistence in a specific activity.	Child’s Context questionnaire (developed for this study)	Self-completed electronic form	5–15 minutes

Table 1. Description of the components, domains and contextual factors that will be assessed in the e-Followkids protocol.

(INSERT_TABLE_1)

Legend

Pediatric Evaluation of Disability Inventory Computer Adaptive Test = PEDI-CAT; Young Children's Participation and Environment Measure = YC-PEM; Social Support Scale = SSS; Affordances in the Home Environment for Motor Development = AHEMD; Baby Pediatric Symptom Checklist = BPSC; Preschool Pediatric Symptom Checklist = PPSC; Survey of Well-being of Young Children = SWYC.

Pediatric Evaluation of Disability Inventory Computer Adaptive Test

PEDI-CAT is a scale with good validity and reliability (53) that assesses the functional skills of children and young people from birth to 21 years old. It can be applied remotely for different health conditions (54), and covers the following domains: daily activities, mobility, social/cognitive and responsibility, with a total of 276 items. However, the present study will use the rapid version (Speed-CAT), translated and adapted for Brazilian Portuguese (55) and completed by the caregivers, applying 5 to 15 items per domain. All the domains, except responsibility, will be evaluated separately and the normative (T score) and continuous scores used for analyses. The assessments will be conducted at 12, 18 and 24 months old, using the electronic form generated by PEDI-CAT software.

Young Children's Participation and Environment Measure

The YC-PEM assesses the participation of children, from birth to five years old, at home, preschool/daycare and in the community, considering frequency (how often the child participates in the activity) and involvement (child’s engagement with the activity), as well as the environment at these locations (56). The original version exhibits internal consistency for frequency and involvement at home (0.76 and 0.83), daycare (0.76 and 0.81) and in the community (0.66 and 0.97), respectively, as well as test-retest reliability at home (0.61 and 0.79), daycare (0.33 and 0.78) and in the community (0.63 and 0.71) (57). In our protocol, participation will be scored based on the guidelines in the manual, considering the average score for frequency and involvement in each section (home, daycare/preschool and community), obtained by adding all the activities the child participates in and dividing the result by the total number of items per section. Higher scores indicate greater current participation (56). The assessments will be carried out by telephone or video call, at 12, 18 and 24 months old.

Child’s Context questionnaire

This questionnaire was developed by the e-FollowKids research group and aims to identify environmental facilitators or barriers and personal aspects of the child. It contains dichotomous and multiple-choice questions (see table_Suppl_1) in random order, separated by domain. It should be noted that the questionnaire has not yet been tested for construct validity.

Its 26 items are divided into the following domains: socioeconomic data (family income and mother’s educational level), parental attitudes (opportunities provided by the caregivers), family interaction (questions related to relationships with the parents and siblings), social interaction (interaction with people outside the immediate family), daycare (presence and characteristic of the daycare center), physiotherapy (presence and frequency), physical resources (used of a walker and screens) and personal factors involving the child (motivational aspects to perform an activity). The questionnaire will be applied at 12, 18 and 24 months. The answers for each question will be presented in terms of frequency and percentage. For regression analysis, each answer will be categorized and included as a predictor.

Social Support Scale

The SSS measures the perceived availability of social support from others to cope with life’s difficulties. It contains 19 questions related to how often the individual can rely on someone in a specific life event, across 3 domains (emotional, affective and material), and was translated and adapted for Brazilian Portuguese (58). It will be sent to the parents as an electronic form when the children are 12, 18 and 24 months old. The total raw score will be used for analyses.

Affordances in the Home Environment for Motor Development

The AHEMD is a validated instrument that assesses motor development opportunities at home during childhood, with two age-specific questionnaires: 3–18 months (infant scale) and 18–42 months. Both have good intra and interrater reliability (59, 60) and contain 35 and 67 items, respectively, divided into the following dimensions: physical space at home (inside and outside), variety of stimuli and availability of toys for gross and fine motor skills, respectively.

The version for 18 to 42-month-old children has been translated into Portuguese. Both instruments contain dichotomous questions in a Likert scale format.

The total score for the internal and external physical environment on the Affordances in the Home Environment for Motor Development – Infant Scale (AHEMD-IS) and AHEMD and the daily activities domain (AHEMD) for 24-month-old children will be used for analyses.

Environment section of the YC-PEM

The home environment measure is the second part of the YC-PEM and contains 13 questions, with 16 in the daycare-related section and 17 for the community portion. The questions address the physical layout or amount of space and furniture; physical (strength and motor coordination) or mental demands of the environment for activities; interaction with family members and other aspects that help or hinder children’s participation in all their environments (61). The environments will be analyzed via scores for support and barriers in each setting, with assessment conducted at 12, 18 and 24 months old.

Socioeconomic data

In order to assess the impact of family income and mother’s age and educational level on the functioning of the children, the following will be used for analyses: 1) financial data in Brazilian reals and subsequently converted into US dollars, mother’s age in years and her educational level.

Survey of Well-being of Young Children

The SWYC assesses the development and behavior of children under 65 months old. Its psychometric properties demonstrate test-retest reliability (61). The present study will use the Baby Pediatric Symptom Checklist (BPSC) and Preschool Pediatric Symptom Checklist (PPSC), which analyze behavioral and emotional symptoms in children under 18 months and between 18 and 65 months and 31 days old, respectively. The Brazilian Portuguese versions will be applied (62) at 12, 18 and 24 months, and the raw scores will be used for analyses.

Feasibility of the e- Followkids protocol

The feasibility of protocol implementation from the caregivers’ perspective will be analyzed at 12 and 24 months, based on adherence rates and parents’ perception of the protocol.

Adherence rates will be determined based on the following calculations: a) recruitment: number of eligible caregivers divided by the number of caregivers contacted; b) adherence: total number of caregivers at the end of the study divided by the number included; c) loss: total number of withdrawals after starting at least one stage of the protocol divided by the total number of caregivers who completed the study. Recruitment and adherence rates above 80% will be indicative of good feasibility (63).

Caregivers’ perception will be evaluated with a questionnaire (Google Drive), sent via WhatsApp after the 12-month assessment, and at the end of the protocol, at 24 months. The questions will address: 1) caregiver satisfaction with the assessment; 2) identifying barriers; 3) assessment feasibility: protocol duration and caregiver’s understanding. Data on the variables and questions that will be considered are presented in Table 2.

The questionnaire covers all stages of the protocol, from completing the questionnaires to the telephone or video call interviews and assessment of study participation. Issues regarding the longitudinal screening process will also be addressed during a 1-year follow-up. All the responses will be presented using descriptive statistics, as frequencies and percentages.

Table 2

Characterization of the feasibility of the *e-Followkids* protocol.
Variable	Questions for the feasibility questionnaire
Caregiver satisfaction	“Do you think the questions successfully identified factors that help or hinder your child’s routine?” “Did you feel comfortable answering the questions?” “Do you consider completing the 2 forms and telephone/video call interview feasible or not?” “Would you recommend our study to other families?” “Were you satisfied with the report you received?” “Did anything change for you after completing the assessments?” “Are you pleased that you took part in the study?”
Identifying barriers to online assessment	“Did you find it difficult to access or complete the forms provided?” “Did you experience any difficulties with the telephone or video call interviews?”
Duration and understanding of the protocol	“How long did you take to answer the questionnaires?”; “How did you feel about the process of answering the questionnaires?” “How did you feel about the length of the telephone or video call interview?” “How would you classify your understanding of the questions asked?”
Screening execution	“Did you have to ask the researcher for help?” “Did you identify any omissions on the forms?” “Do you prefer the online assessment (the format used) or would you prefer it to be done in person?” “Do you think it’s important to apply the questionnaires when the child is 12, 18 and 24 months old?” “Do you think it was necessary to communicate with the researcher at 12, 18 and 24 months old?”

Potential bias

Sample selection bias may occur during protocol application. This means that caregivers with superior socioeconomic status (mother’s educational level and household income), better internet access and more available time to participate may represent the largest portion of the sample. Thus, families subject to greater physical and social barriers, especially those with low socioeconomic status, will not be representative in the sample, a common feature of remote studies (64).

Missing data and attrition analysis

Information from at least two protocol stages of all the children will be included in analyses. The aim of longitudinal screening will be to achieve the maximum possible number of responses regarding the variables, since the best approach to deal with missing data is ensuring the greatest probability of obtaining complete information for each child (65). For participants who complete two of the three screening processes, missing data will be imputed via multiple imputation.

Statistical analysis

Descriptive analysis will be conducted using frequency, percentages, and measures of central tendency for all the variables in this study. Next, the quantitative data will be analyzed to determine normal distribution and homoscedasticity using the Shapiro-Wilk and Levene’s tests.

The PEDI-CAT and YC-PEM variables at the three screening times (12, 18 and 24 months) will be compared to assess the evolution of functioning in the children studied. To that end, repeated measures ANOVA and the Friedman test will be used for parametric and nonparametric data, respectively.

Multiple linear regression will be performed to analyze the components that affect participation and functional skills in each age group (12, 18 and 24 months), with participation at home, daycare and in the community, and the PEDI-CAT variables (daily activities, mobility and social/cognitive) as dependent variables. The predictors will be the BPSC and PPSC questionnaires of the SWYC-BR, AHEMD-IS and AHEMD, the environment section of the YC-PEM, SSS, and domains of the Child’s Context questionnaire created for this study.

This article describes the e-Followkids protocol, a screening program for functioning in children with biological risk at 12, 18 and 24 months old. After data collection and analysis, if the protocol is deemed feasible and acceptable from the caregivers’ perspective, the evidence may lead to implementation of e-Followkids in primary healthcare services to monitor children at risk.

Biological risk factors for developmental delays may result in disability (66), limitations in motor, cognitive, behavioral, social, and everyday activities (17–19, 21) and restricted participation in different life contexts (26). Thus, the e-Followkids protocol could contribute to identifying possible signs of limitations and guiding referrals to specialized intervention, thus helping families with physical and social barriers to access in-person services and, through online protocols, reaching a larger number of children at risk. Additionally, the protocol can be used as a support tool to enhance therapeutic approaches in children younger than three years old.

NICU = Neonatal Intensive Care

WHO = World Health Organization

CIF = International Classification of Functioning, Disability and Health

SGA = Small for Gestational Age

CCEB = Brazilian Economic Classification Criteria

PEDI-CAT = Pediatric Evaluation of Disability Inventory Computer Adaptive Test

YC-PEM = Young Children`s Participation and Environment Measure

Speed-CAT = rapid version

SSS = Social Support Scale

AHEMD = Affordances in the Home Environment for Motor Development

AHEMD-IS = Affordances in the Home Environment for Motor Development – Infant Scale

SWYC = Survey of Well-being of Young Children

BPSC = Baby Pediatric Symptom Checklist

PPSC = Preschool Pediatric Symptom Checklist.

Ethics approval and consent to participate

The study was conducted according to the guidelines of the Declaration of Helsinki, and approved by the Ethics Committee of Federal University of São Carlos (UFSCar) - Case: 60443522.5.0000.5504 and the University of São Paulo University (USP) – Case: 60443522.5.3001.0076; Brazil. Informed consent was obtained from all subjects involved in the study.

Consent for publication

Not applicable.

Availability of data and materials

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Competing interests

The authors declare that they have no competing interests.

Funding

This work was supported by the Cordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES); Brazil – Finance Code 001.

The financing is directly limited to the financial scholarship that the main author (doctoral student) receives during the elective period of the course. There was no peer review or any help in the technical and conceptual development of the study by the funding agency.

Authors' contributions

Raissa Abreu: Conceptualization; methodology; Project administration; visualization; writing-original draft; writing – review & editing. Camila Lima: formal analysis; methodology; visualization; writing – original draft; writing – review & editing. Adriana dos Santos: Writing – original draft; Writing – review & editing. Nelci Adriana Rocha: Conceptualization; methodology; financing acquisition, Project administration; visualization; Supervision; writing – original draft; writing – review & editing.

Acknowledgements

Not applicable.

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Remote screening protocol for functioning and contextual factors (e-Followkids) in Brazilian children with biological risk in the first 2 years: a longitudinal prospective study

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Abstract

Background

Methods

Discussion

Figures

Background

Methods

Study Design

Sample size determination

Participants

Recruitment

General procedures

Outcome measures

Pediatric Evaluation of Disability Inventory Computer Adaptive Test

Young Children's Participation and Environment Measure

Child’s Context questionnaire

Social Support Scale

Affordances in the Home Environment for Motor Development

Environment section of the YC-PEM

Socioeconomic data

Survey of Well-being of Young Children

Potential bias

Missing data and attrition analysis

Statistical analysis

Discussion

Abbreviations

Declarations

References

Additional Declarations

Supplementary Files

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