Background Within the Dutch Child Health Care (CHC), an online tool (360° CHILD-profile) is designed to enhance prevention and transformation toward personalized health care. From a personalized preventive perspective, it is of fundamental importance to timely identify children with emerging health problems interrelated to multiple health determinants. While digitalization of children’s health data is now realized, the accessibility of data remains a major challenge for CHC professionals, let alone for parents/youth. Therefore, the idea was initiated from CHC practice to develop a novel approach to make relevant information accessible at a glance. Objective This paper describes the stepwise development of a dashboard, as an example of using a design model to achieve visualization of a comprehensive overview of theoretically structured health data. Methods Developmental process is based on the nested design model with involvement of relevant stakeholders in a real-life context. This model considers immediate upstream validation within 4 cascading design levels: Domain Problem and Data Characterization, Operation and Data Type Abstraction, Visual Encoding and Interaction Design, and Algorithm Design. This model also includes impact-oriented downstream validation, which can be initiated after delivering the prototype. Results A comprehensible 360° CHILD-profile is developed: an online accessible visualization of CHC data based on the theoretical concept of the International Classification of Functioning, Disability and Health. This dashboard provides caregivers and parents/youth with a holistic view on children’s health and “entry points” for preventive, individualized health plans. Conclusions Describing this developmental process offers guidance on how to utilize the nested design model within a health care context.
Background A new dashboard, the 360ºCHILD-profile, was developed to adopt personalized health care within preventive child health care. On this profile, holistic health data are visualized in a single image to provide parents, adolescents, and caregivers direct access to a manageable résumé of a child’s medical record. Theoretical ordering, conforming to “International Classification of Functioning, Disability and Health for Children and Youth”, guides clinical reasoning toward the biopsychosocial concept of health. It is yet unknown if and how this promising tool functions in practice, and a variety of feasibility questions must be addressed. Objective This paper describes the design and methods of a feasibility randomized controlled trial (RCT), with the aim of evaluating the RCT’s feasibility (recruitment, response, measure completion, and intervention allocation) and 360ºCHILD-profile’s feasibility (usability and potential effectiveness). Methods A pragmatic mixed methods study design was chosen, starting with an RCT to measure feasibility and health literacy in 2 parallel groups (1:1). Qualitative research will then be used to understand and explain quantitative findings and to explore the stakeholders' perspectives on the potential of the 360ºCHILD-profile. Participants will include child health care professionals (n≥30), parents (n≥30), and caregivers (n≥10) of children who experience developmental problems (age 0-16 years). Children will only be able to participate if they are older than 11 years (adolescents, n≥10). The 2 groups included in the study will receive standard care. The experimental group will additionally receive personalized 360ºCHILD-profiles. Results After an intervention period of 6 months, quantitative outcomes will be measured, analyzed (descriptive feasibility statistics and preliminary between-group differences) and used to purposively sample for semistructured interviews. Conclusions Study results will provide knowledge for building theory on the 360ºCHILD-profile and designing future (effect) studies. Trial Registration Netherlands Trial Register NTR6909; https://www.trialregister.nl/trial/6731 International Registered Report Identifier (IRRID) DERR1-10.2196/21942
A 3600Child-profile, with theoretically ordered, integral child-information visualized in one image, is designed by the Dutch preventive Child and Youth Health Care (CYHC). The introduction of this new data/information carrier gives an important incentive to enhance a transformation towards personalized health care for children and adolescents by supporting the complex medical thought process of CYHCmedical doctors (MD's). This information tool aims to effectively estimate child's functioning, detect emerging health problems and inform parents and caregivers.This pilot study evaluated aspects of inter- and intra-rater reliability and concurrent validity of the 3600Child-profile when used by MD's to estimate functioning and needed intervention of 4-year-old children. After the development process, in January 2015, 3600Child-profiles (n = 26) were assessed by MD's, in the Netherlands. Each MD assessed two Childprofiles twice and was matched to another MD receiving exactly the same two profiles. The paired scores and rater's scores of both time-points were compared. Rater's scores also were compared with the 26 reference tests scores.Reliability results showed Intraclass correlation coefficients between 0.71 and 0.82 (overall functioning), Cohen's kappa's between 0.61 and 0.80 (psychosocial functioning) and 0.46–0.47 (needed intervention). Validity results showed a Spearman's correlation coefficient of 0.78 (overall functioning), Cohen's kappa's of 0.43 and 0.77 (psychosocial functioning) and 0.52 (needed intervention).In conclusion, in some domains, acceptable results regarding reliability and validity are found for the visualization of integral childinformation used by CYHC-MD's to assess child-functioning after only a short training. The 3600Child-profile's value on tracking change in functioning and decision-making on intervention needs further exploration.
To adopt Personalized Health Care within preventive Child Health Care, a 360⁰CHILD-profile is developed. On this dashboard, holistic health data are visualized in one image to provide parents/youth and caregivers direct access to a manageable résumé of child’s medical record. Theoretical ordering, conform “International Classification of Functioning, Disability and Health (Children and Youth version)”, guides thought processes within the relevant context.
It is yet unknown if and how this promising tool functions in practice and a variety of feasibility questions must be addressed. This paper describes design and methods of a Feasibility RCT, to be performed in the Netherlands (January 2019 - September 2020). RCT’s feasibility (recruitment, response, measure completion, intervention allocation) and 360⁰CHILD-profile’s feasibility (usability, potential effectiveness) will be evaluated. A pragmatic Mixed Methods design is chosen, starting with an RCT to measure feasibility and health literacy in two parallel groups (1:1). Then, qualitative research will be performed to understand/explain quantitative findings and explore stakeholder’s perspectives on 360⁰CHILD-profile’s potential. Participating CHC-professionals (n≥30) will recruit parents (n≥30) and caregivers (n=±10) of children, who experience problems (age 0-16). Children will only participate if age is above 11 (youth, n=±10). Both groups receive care as usual. Experimental group, additionally, gets access to personalized 360⁰CHILD-profiles. Six months after baseline, quantitative outcomes will be measured, analysed (descriptive feasibility statistics and preliminary between group difference) and used to purposively sample for semi-structured interviews. Study results will provide knowledge for building theory on the CHILD-profile and designing future (effect) studies. Trial registration: NTR 6909; https://www.trialregister.nl/trial/6731
Background Within preventive Child Health Care (CHC), the 360°CHILD-profile has been developed. This digital tool visualises and theoretically orders holistic health data in line with the International Classification of Functioning, Disability and Health. It is anticipated that evaluating the effectiveness of the multifunctional 360°CHILD-profile within the preventive CHC-context is complex. Therefore, this study aimed at investigating the feasibility of RCT procedures and the applicability of potential outcome measures for assessing the accessibility and transfer of health information. Methods During the first introduction of the 360°CHILD-profile in CHC practice, a feasibility RCT with an explanatory-sequential mixed methods design was executed. CHC professionals (n=38) recruited parents (n=30) who visited the CHC for their child (age 0–16). Parents were randomised to “care as usual” (n=15) or “care as usual with, in addition, the availability of a personalised 360°CHILD-profile during 6 months” (n=15). Quantitative data on RCT feasibility were collected on recruitment, retention, response, compliance rates and outcome data on accessibility and transfer of health information (n=26). Subsequently, thirteen semi-structured interviews (5 parents, 8 CHC professionals) and a member check focus group (6 CHC professionals) were performed to further explore and gain a deeper understanding of quantitative findings. Results Integration of qualitative and quantitative data revealed that the recruitment of parents by CHC professionals was problematic and influenced by organisational factors. The used randomisation strategy, interventions and measurements were executable within the setting of this specific study. The outcome measures showed skewed outcome data in both groups and a low applicability to measure accessibility and transfer of health information. The study revealed points to reconsider regarding the randomisation and recruitment strategy and measures in the next steps. Conclusions This mixed methods feasibility study enabled us to gain a broad insight into the feasibility of executing an RCT within the CHC context. Trained research staff should recruit parents instead of CHC professionals. Measures, potentially for evaluating 360°CHILD-profile’s effectiveness, need further exploration and thorough piloting before proceeding with the evaluation process. Overall findings revealed that executing an RCT within the context of evaluating 360°CHILD-profile’s effectiveness in the CHC setting will be much more complex, time-consuming and costly than expected. Thereby, the CHC context requires a more complex randomisation strategy than executed during this feasibility study. Alternative designs including mixed methods research must be considered for the next phases of the downstream validation process. Trial registration NTR6909; https://trialsearch.who.int/.
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