Post-COVID-19 condition in children: epidemiological evidence stratified by acute disease severity.

BACKGROUND: To determine the prevalence of pediatric Post-COVID-19 condition (PPCC), identify risk factors, and assess the quality of life in children with differing severities of acute COVID-19. METHODS: During a prospective longitudinal study with a 1-year follow-up, we compared non-hospitalized (mild) and hospitalized (severe) COVID-19 cases to a negatively tested control group. RESULTS: 579 children were included in this study. Of these, 260 had mild acute disease (median age:8, IQR:6-10), 60 had severe acute disease (median age:1, IQR:0.1-4.0), and 259 tested negative for SARS-CoV-2 (NT) (median age:8, IQR:5-10). At three months, 14.6% of the SARS-CoV-2 positive mild group (RR:6.31 (CI 95%: 2.71-14.67)) and 29.2% of the severe group (RR:12.95 (CI 95%: 5.37-31.23)) reported sequelae, versus 2.3% of the NT group. PPCC prevalence in the mild group decreased from 16.1% at one month to 4.4% at one year. Children with PPCC exhibited lower physical health-related quality of life scores and higher fatigue scores than the NT children. CONCLUSIONS: Severe acute COVID-19 in children leads to a higher PPCC prevalence than in mild cases. PPCC prevalence decreases over time. Risk factors at three months include prior medical history, hospital admission, and persistent fatigue one month after a positive test. IMPACT: We demonstrate children with severe COVID-19 are more likely to develop Post-COVID-19 condition than those with mild or no infections, and highlights the risk factors. Here we have stratified by acute disease severity, prospectively included a negative control group, and have demonstrated the heterogeneity in prevalence when utilizing various recent definitions of post-COVID. Identifying risk factors for pediatric post-COVID and highlighting the heterogeneity in prevalence based on various current definitions for post-COVID should aid in correctly identifying potential pediatric post-COVID cases, aiding in early intervention.

A Multidisciplinary Approach: Management and Rehabilitation of Children With Pediatric Post-COVID-19 Condition.

Post-COVID-19 condition in children is a still largely unknown syndrome with a diverse pattern of symptoms, which can have a major impact on daily life. Currently, there are no evidence-based proven treatments, and the focus is on symptom management and recovery of daily functioning. A multidisciplinary, tailored approach is recommended, with attention to energy management and activity building, where the main goal should be a return to baseline levels of cognitive, physical and social activity.

Designing eHealth interventions for children with complex care needs requires continuous stakeholder collaboration and co-creation.

Objective: Hospital-to-home (H2H) transitions challenge families of children with medical complexity (CMC) and healthcare professionals (HCP). This study aimed to gain deeper insights into the H2H transition process and to work towards eHealth interventions for its improvement, by applying an iterative methodology involving both CMC families and HCP as end-users. Methods: For 20-weeks, the Dutch Transitional Care Unit consortium collaborated with the Amsterdam University of Applied Sciences, HCP, and CMC families. The agile SCREAM approach was used, merging Design Thinking methods into five iterative sprints to stimulate creativity, ideation, and design. Continuous communication allowed rapid adaptation to new information and the refinement of solutions for subsequent sprints. Results: This iterative process revealed three domains of care - care coordination, social wellbeing, and emotional support - that were important to all stakeholders. These domains informed the development of our final prototype, 'Our Care Team', an application tailored to meet the H2H transition needs for CMC families and HCP. Conclusion: Complex processes like the H2H transition for CMC families require adaptive interventions that empower all stakeholders in their respective roles, to promote transitional care that is anticipatory, rather than reactive. Innovation: A collaborative methodology is needed, that optimizes existing resources and knowledge, fosters innovation through collaboration while using creative digital design principles. This way, we might be able to design eHealth solutions with end-users, not just for them.

The Intrarater and Interrater Reliability of the OMT Classification Among Physicians With a Different Background.

BACKGROUND: The Oberg-Manske-Tonkin (OMT) classification established excellent reliability scores in several validation studies. However, one study published in 2022 found much lower scores in a subanalysis of their sample when very simple anomalies were excluded. Our study assessed the reliability of the OMT among physicians with a different background, all involved in congenital hand anomaly care, and analyzed codes with less agreement. Time required for classification was recorded to give an indication on its usability. METHODS: One hundred digital cases were classified twice with a minimal 1-month time interval, with the use of the 2020 version of the OMT. Two pediatric hand surgeons, 2 rehabilitation specialists, and 2 plastic surgery residents participated in this reliability analysis. The use of multiple codes was allowed. The intra- and interrater reliability was assessed for all 15 possible rater couples by calculating percentage of agreement. Cohen's kappa was calculated along with a 95% confidence interval. For the analysis of individual codes with less agreement, we calculated positive agreement with the use of a summed agreement table. Time necessary for classification was documented in seconds. RESULTS: The inter- and intrarater agreement was moderate with a mean Cohen's kappa of 0.45 and 0.60 retrospectively. On average, 39 seconds per case were necessary for the first and 24 seconds for the second rating. Background did not influence the level of agreement. Lowest agreement levels (ie, lowest positive agreement) were observed with all the arthrogryposis multiplex congenita subgroups, the "other" subgroups of isolated congenital contractures, syndromic syndactyly, and synpolydactyly. Codes commonly used interchangeably were symbrachydactyly and transverse deficiency and the distinction between these anomalies of only the hand or the entire upper limb; symbrachydactyly and brachydactyly; and camptodactyly and distal arthrogryposis. CONCLUSIONS: Our study showed a moderate reliability, emphasizing the complexity of this heterogeneous patient population. Despite its imperfections, the OMT remains the best and most versatile classification tool at hand. Its main purpose may lie in contributing to a universal language for research. LEVEL OF EVIDENCE: I.

Clinical-based phenotypes in children with pediatric post-COVID-19 condition.

BACKGROUND: Pediatric post coronavirus disease 2019 (COVID-19) condition (PPCC) is a heterogeneous syndrome, which can significantly affect the daily lives of children. This study aimed to identify clinically meaningful phenotypes in children with PPCC, to better characterize and treat this condition. METHODS: Participants were children with physician-diagnosed PPCC, referred to the academic hospital Amsterdam UMC in the Netherlands between November 2021 and March 2023. Demographic factors and information on post-COVID symptoms, comorbidities, and impact on daily life were collected. Clinical clusters were identified using an unsupervised and unbiased approach for mixed data types. RESULTS: Analysis of 111 patients (aged 3-18 years) revealed three distinct clusters within PPCC. Cluster 1 (n = 62, median age = 15 years) predominantly consisted of girls (74.2%). These patients suffered relatively more from exercise intolerance, dyspnea, and smell disorders. Cluster 2 (n = 33, median age = 13 years) contained patients with an even gender distribution (51.5% girls). They suffered from relatively more sleep problems, memory loss, gastrointestinal symptoms, and arthralgia. Cluster 3 (n = 16, median age = 11 years) had a higher proportion of boys (75.0%), suffered relatively more from fever, had significantly fewer symptoms (median of 5 symptoms compared to 8 and 10 for clusters 1 and 2 respectively), and experienced a lower impact on daily life. CONCLUSIONS: This study identified three distinct clinical PPCC phenotypes, with variations in sex, age, symptom patterns, and impact on daily life. These findings highlight the need for further research to understand the potentially diverse underlying mechanisms contributing to post-COVID symptoms in children.

The development and validation of the S-scan-parental self-management support (S-scan - PS): A self-reflection tool for child healthcare professionals.

BACKGROUND: Professionals providing self-management support to parents regarding the care for their child with a chronic condition nowadays is an important aspect of child healthcare. This requires professionals to orient themselves towards partnership and collaboration with parents. The aims of the current study were the development and validation of the S-Scan-Parental self-management Support (S-scan - PS) as a tool for healthcare professionals to reflect on their attitude and practices regarding the support for parental self-management. METHODS: An existing instrument was adapted together with field experts for professionals to self-evaluate their support for self-management of parents. The resulting 36-item self-report questionnaire was filled in by healthcare professionals in the Netherlands working with children and their parents. Cognitive interviews, exploratory and confirmatory factor analysis (CFA), and test-retest reliability analysis were part of the development and validation process. RESULTS: In total, 434 professionals, including physicians, physiotherapists, occupational therapists, and nurses, from 13 rehabilitation institutes and 5 medical centres participated. The cognitive interviews with child healthcare professionals indicated adequate face and content validity. The S-scan - PS scale had acceptable internal consistency (0.71 ≤ α ≤ 0.91) for the total score as well as the domain scores. CFA showed acceptable root mean square error of approximation (RMSEA) model fit (0.066), though not on other tested goodness-of-fit indices. Test-retest reliability of the instrument was moderate with an average intraclass correlation coefficient (ICC) = 0.61. CONCLUSIONS: The S-scan - PS fulfils important psychometric criteria for use by child healthcare professionals to reflect on parental self-management support. Such self-reflection might help to improve their approach towards supporting self-management of parents in the care for their child with a chronic condition. Further research is needed into the construct validity and test-retest reliability of the instrument.

Hospital-to-home transitions for children with medical complexity: part 2-a core outcome set.

Appropriate outcome measures as part of high-quality intervention trials are critical to advancing hospital-to-home transitions for Children with Medical Complexity (CMC). Our aim was to conduct a Delphi study and focus groups to identify a Core Outcome Set (COS) that healthcare professionals and parents consider essential outcomes for future intervention research. The development process consisted of two phases: (1) a three-round Delphi study in which different professionals rated outcomes, previously described in a systematic review, for inclusion in the COS and (2) focus groups with parents of CMC to validate the results of the Delphi study. Forty-five professionals participated in the Delphi study. The response rates were 55%, 57%, and 58% in the three rounds, respectively. In addition to the 24 outcomes from the literature, the participants suggested 12 additional outcomes. The Delphi rounds resulted in the following core outcomes: (1) disease management, (2) child's quality of life, and (3) impact on the life of families. Two focus groups with seven parents highlighted another core outcome: (4) self-efficacy of parents.   Conclusion: An evidence-informed COS has been developed based on consensus among healthcare professionals and parents. These core outcomes could facilitate standard reporting in future CMC hospital to home transition research. This study facilitated the next step of COS development: selecting the appropriate measurement instruments for every outcome. What is Known: • Hospital-to-home transition for Children with Medical Complexity is a challenging process. • The use of core outcome sets could improve the quality and consistency of research reporting, ultimately leading to better outcomes for children and families. What is New: • The Core Outcome Set for transitional care for Children with Medical Complexity includes four outcomes: disease management, children's quality of life, impact on the life of families, and self-efficacy of parents.

Hospital-to-home transitions for children with medical complexity: part 1, a systematic review of reported outcomes.

Outcome selection to evaluate interventions to support a successful transition from hospital to home of children with medical complexity (CMC) may be difficult due to the variety in available outcomes. To support researchers in outcome selection, this systematic review aimed to summarize and categorize outcomes currently reported in publications evaluating the effectiveness of hospital-to-home transitional care interventions for CMC. We searched the following databases: Medline, Embase, Cochrane library, CINAHL, PsychInfo, and Web of Science for studies published between 1 January 2010 and 15 March 2023. Two reviewers independently screened the articles and extracted the data with a focus on the outcomes. Our research group extensively discussed the outcome list to identify those with similar definitions, wording or meaning. Consensus meetings were organized to discuss disagreements, and to summarize and categorize the data. We identified 50 studies that reported in total 172 outcomes. Consensus was reached on 25 unique outcomes that were assigned to six outcome domains: mortality and survival, physical health, life impact (the impact on functioning, quality of life, delivery of care and personal circumstances), resource use, adverse events, and others. Most frequently studied outcomes reflected life impact and resource use. Apart from the heterogeneity in outcomes, we also found heterogeneity in designs, data sources, and measurement tools used to evaluate the outcomes.     Conclusion: This systematic review provides a categorized overview of outcomes that may be used to evaluate interventions to improve hospital-to-home transition for CMC. The results can be used in the development of a core outcome set transitional care for CMC.

Instructions for Administering the Canadian Occupational Performance Measure with Children Themselves.

AIMS: The Canadian Occupational Performance Measure (COPM) can be used to support children to clarify their needs themselves. However, for pediatric occupational therapists it is not sufficiently clear how to effectively use the COPM with children from 8 years of age.This study aimed to formulate specific instructions for using the COPM with children themselves, based on the experience of children, parents, and occupational therapists. In addition, professional consensus on the instructions was reached. METHODS: A multi-stage approach was used to develop the instructions. Triangulation of methods was used to gather knowledge of how the COPM with children themselves is performed in daily practice: interviews with 23 children, questionnaires completed by 30 parents, interviews with 13 therapists, and 10 video recordings of COPM administration. Specific instructions were derived from this knowledge and consensus for these instructions was reached by Delphi method. RESULTS: The data were analyzed and resulted in 40 specific instructions. Consensus of at least 80% amongst 10 occupational therapists, who regularly use the COPM with children, was achieved on each instruction. CONCLUSION: There is consensus on 40 specific instructions for administering the COPM with children. Following these instructions might help children to formulate their own goals for intervention.

Prognostic factors influencing parental empowerment after discharge of their hospitalized child: A cross-sectional study.

PURPOSE: There is a growing number of children with medical complexity (CMC). After hospitalization, care often has to be continued at home, making transitional care very important. However, many parents do not feel empowered in their role as caregiver for the child. To move forward in this field, we explored prognostic factors associated with parental empowerment after discharge of hospitalized children. DESIGN AND METHODS: In a cross-sectional study, we collected data on potential prognostic factors found in the literature and on parental empowerment by means of the Family Empowerment Scale (FES). Linear regression analyses were performed to explore the associations between the prognostic factors and the FES. RESULTS: Data from 228 patients and their parents were analyzed. Out of twelve factors included in the study, three showed significant associations with parental empowerment. Parents of CMC felt more empowered compared to parents of children with less complex conditions (ß = 0.20, p = 0.00). We found a positive association between the age of the child and parental empowerment (ß = 0.01, p = 0.00). Employed couples felt more empowered compared to unemployed couples (ß = 0.30, p = 0.00). These three variables explained 11% of variance in the FES scores. CONCLUSIONS: Parental empowerment is associated with the patient's age, child's medical complexity, and parental employment status. PRACTICE IMPLICATIONS: Attention should be paid to the discharge preparation of parents of children with less medical complexity. Awareness is required for parents of younger children and parental employment status, because they are at risk for lower parental empowerment.

Heritable connective tissue disorders in childhood: Decreased health-related quality of life and mental health.

The psychosocial consequences of growing up with Heritable Connective Tissue Disorders (HCTD) are largely unknown. We aimed to assess Health-Related Quality of Life (HRQoL) and mental health of children and adolescents with HCTD. This observational multicenter study included 126 children, aged 4-18 years, with Marfan syndrome (MFS, n = 74), Loeys-Dietz syndrome (n = 8), molecular confirmed Ehlers-Danlos syndromes (n = 15), and hypermobile Ehlers-Danlos syndrome (hEDS, n = 29). HRQoL and mental health were assessed through the parent and child-reported Child Health Questionnaires (CHQ-PF50 and CHQ-CF45, respectively) and the parent-reported Strengths and Difficulties Questionnaire. Compared with a representative general population sample, parent-reported HRQoL of the HCTD-group showed significantly decreased Physical sum scores (p < 0.001, d = 0.9) and Psychosocial sum scores (p = 0.024, d = 0.2), indicating decreased HRQoL. Similar findings were obtained for child-reported HRQoL. The parent-reported mental health of the HCTD-group showed significantly increased Total difficulties sum scores (p = 0.01, d = 0.3), indicating decreased mental health. While the male and female MFS- and hEDS-subgroups both reported decreased HRQoL, only the hEDS-subgroup reported decreased mental health. In conclusion, children and adolescents with HCTD report decreased HRQoL and mental health, with most adverse outcomes reported in children with hEDS and least in those with MFS. These findings call for systematic monitoring and tailored interventions.

Physical Functioning After Admission to the PICU: A Scoping Review.

OBJECTIVES: To conduct a scoping review to 1) describe findings and determinants of physical functioning in children during and/or after PICU stay, 2) identify which domains of physical functioning are measured, 3) and synthesize the clinical and research knowledge gaps. DATA SOURCES: A systematic search was conducted in PubMed, Embase, Cumulative Index to Nursing and Allied Health Literature, and Cochrane Library databases following the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews guidelines. STUDY SELECTION: Two investigators independently screened and included studies against predetermined criteria. DATA EXTRACTION: One investigator extracted data with review by a second investigator. A narrative analyses approach was used. DATA SYNTHESIS: A total of 2,610 articles were identified, leaving 68 studies for inclusion. Post-PICU/hospital discharge scores show that PICU survivors report difficulties in physical functioning during and years after PICU stay. Although sustained improvements in the long-term have been reported, most of the reported levels were lower compared with the reference and baseline values. Decreased physical functioning was associated with longer hospital stay and presence of comorbidities. A diversity of instruments was used in which mobility and self-care were mostly addressed. CONCLUSIONS: The results show that children perceive moderate to severe difficulties in physical functioning during and years after PICU stay. Longitudinal assessments during and after PICU stay should be incorporated, especially for children with a higher risk for poor functional outcomes. There is need for consensus on the most suitable methods to assess physical functioning in children admitted to the PICU.

Heritable Connective Tissue Disorders in Childhood: Increased Fatigue, Pain, Disability and Decreased General Health.

Heritable Connective Tissue Disorders (HCTD) show an overlap in the physical features that can evolve in childhood. It is unclear to what extent children with HCTD experience burden of disease. This study aims to quantify fatigue, pain, disability and general health with standardized validated questionnaires. METHODS: This observational, multicenter study included 107 children, aged 4-18 years, with Marfan syndrome (MFS), 58%; Loeys-Dietz syndrome (LDS), 7%; Ehlers-Danlos syndromes (EDS), 8%; and hypermobile Ehlers-Danlos syndrome (hEDS), 27%. The assessments included PROMIS Fatigue Parent-Proxy and Pediatric self-report, pain and general health Visual-Analogue-Scales (VAS) and a Childhood Health Assessment Questionnaire (CHAQ). RESULTS: Compared to normative data, the total HCTD-group showed significantly higher parent-rated fatigue T-scores (M = 53 (SD = 12), p = 0.004, d = 0.3), pain VAS scores (M = 2.8 (SD = 3.1), p < 0.001, d = 1.27), general health VAS scores (M = 2.5 (SD = 1.8), p < 0.001, d = 2.04) and CHAQ disability index scores (M = 0.9 (SD = 0.7), p < 0.001, d = 1.23). HCTD-subgroups showed similar results. The most adverse sequels were reported in children with hEDS, whereas the least were reported in those with MFS. Disability showed significant relationships with fatigue (p < 0.001, rs = 0.68), pain (p < 0.001, rs = 0.64) and general health (p < 0.001, rs = 0.59). CONCLUSIONS: Compared to normative data, children and adolescents with HCTD reported increased fatigue, pain, disability and decreased general health, with most differences translating into very large-sized effects. This new knowledge calls for systematic monitoring with standardized validated questionnaires, physical assessments and tailored interventions in clinical care.

How children and their parents value using the Canadian Occupational Performance Measure (COPM) with children themselves.

PURPOSE: Although the Canadian Occupational Performance Measure (COPM) is used with children, it is unclear how they and their parents experience this. This study aims to investigate the opinions of children and their parents about the COPM when it is used with children. METHODS: Semi-structured interviews were performed with 23 children varying in age between 8 and 18 years. The transcripts of the interviews were analysed using MAXQDA software to discover overarching themes. Parents' responses to an eight-item multiple-choice questionnaire were analysed using SPSS software. RESULTS: Five themes extracted from the interviews with the children show: My way of doing the COPM; The COPM shows my own problems and wishes for change; The COPM is important for identifying the support I need; The influence of my parents and my therapist; and The COPM is suitable for me. The children experienced the COPM as a valuable tool for determining and measuring the impact of an intervention. The parents experienced the COPM as suitable for their child and judged that the child's scores were useful for showing the outcome of an intervention. CONCLUSION: Both the children and their parents valued the COPM as an outcome measure for intervention.

Parenting a child with Marfan syndrome: Distress and everyday problems.

Marfan syndrome (MFS) is a multisystemic, autosomal dominant connective tissue disorder that occurs de novo in 25%. In many families, parent and child(ren) are affected, which may increase distress in parents. To assess distress, 42 mothers (29% MFS) and 25 fathers (60% MFS) of 43 affected children, completed the validated screening-questionnaire Distress thermometer for parents of a chronically ill child, including questions on overall distress (score 0-10; ≥4 denoting "clinical distress") and everyday problems (score 0-36). Data were compared to 1,134 control-group-parents of healthy children. Mothers reported significantly less overall distress (2, 1-4 vs. 3, 1-6; p = .049; r = -.07) and total everyday problems (3, 0-6 vs. 4, 1-8; p = .03; r = -.08) compared to control-group-mothers. Mothers without MFS reported significantly less overall distress compared to mothers with MFS, both of a child with MFS (1, 0-4 vs. 3.5, 2-5; p = .039; r = -.17). No significant differences were found between the father-groups, nor between the group of healthy parents of an affected child living together with an affected partner compared to control-group-parents. No differences in percentages of clinical distress were reported between mothers and control-group-mothers (33 vs. 42%); fathers and control-group-fathers (28 vs. 32%); nor between the other groups. Distress was not associated with the children's MFS characteristics. Concluding, parents of a child with MFS did not show more clinical distress compared to parents of healthy children. However, clinical distress was reported in approximately one-third and may increase in case of acute medical complications. We advise monitoring distress in parents of a child with MFS to provide targeted support.

Designing a tool to support patient and public involvement in research projects: the Involvement Matrix.

BACKGROUND: Interest in patient involvement in research is growing. Research should rather be 'with' or 'by' patients, and not only be 'about' or 'for' patients. Patients' active involvement in research is not self-evident and special efforts have to be made. If we make efforts towards patient involvement, it could contribute to even more relevant projects with an even greater impact. In this paper we describe the process of development of a tool to support patient involvement in research projects. METHODS: The tool development was done in a co-creation of experience experts (patients and their parents/relatives) together with researchers. We used a participatory method in an iterative process comprising three consecutive stages. First, the purpose for the tool was explored, using focus groups. Second, the main ingredients and conceptualization for the tool were determined, using a narrative review. Third, the so-called Involvement Matrix was formalized and finalized using various expert panels. RESULTS: A conversation tool was developed, through which researchers and patients could discuss and explain their roles of involvement in a research project. This tool was formalized and visualized as a 'matrix'. The so-called Involvement Matrix describes five roles (i.e., Listener, Co-thinker, Advisor, Partner, and Decision-maker) and three phases (i.e., Preparation, Execution, and Implementation) and includes a user's guide. CONCLUSION: The Involvement Matrix can be used prospectively to discuss about possible roles of patients in different phases of projects, and retrospectively to discuss whether roles were carried out satisfactorily. Sharing experiences with the Involvement Matrix and evaluating its impact are the next steps in supporting patient involvement in research.

Marfan syndrome in adolescence: adolescents' perspectives on (physical) functioning, disability, contextual factors and support needs.

Although essential for providing optimal adolescent patient support, knowledge of the impact of Marfan syndrome in adolescence is limited. To explore adolescents' perceived impact of Marfan syndrome on (physical) functioning (activities, participation), disability (limitations, restrictions), contextual factors and support needs, we interviewed 19 adolescents with Marfan syndrome. Audio-recordings were transcribed, coded and analysed using thematic analysis. Identified themes were "difficulties in keeping up with peers" and "being and feeling different from peers". Furthermore, an adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and its contextual factors. Adolescents perceived problems in keeping up with peers in school, sports, leisure and friendships/relationships, and they could not meet work requirements. Moreover, participants perceived to differ from peers due to their appearance and disability. Contextual factors: coping with Marfan syndrome, self-esteem/image, knowledge about Marfan syndrome, support from family/friends/teachers, ability to express needs and peer-group acceptation acted individually as barrier or facilitator for identified themes.Conclusion: Adolescents with Marfan syndrome perceived limitations and restrictions in (physical) functioning. They perceived problems in keeping up with peers and perceived to differ from peers due to their appearance and disability. This warrants awareness and tailored physical, psychosocial, educational and environmental support programmes to improve (physical) functioning and empowerment of adolescents with Marfan syndrome.What is known:• Marfan syndrome is a hereditary connective tissue disorder.• Marfan syndrome affects multiple systems.What is new:• Adolescents with Marfan syndrome perceive (1) problems in keeping up with peers in school, sports, leisure, friendships/relationships and work (2) to differ from peers due to their appearance and disability.• An adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and contextual factors.

Parental empowerment in paediatric rehabilitation: Exploring the role of a digital tool to help parents prepare for consultation with a physician.

BACKGROUND: To explore experiences of parents of children with disabilities using the WWW, roadmap, a tool to support them in exploring needs, finding information, and asking questions of professionals and to explore differences between parents who had used the WWW-roadmap to prepare for consultation with their rehabilitation physician and parents who had not. METHODS: In a sequential cohort study, we included 128 parents; 54 used the WWW-roadmap prior to consultation and 74 received care-as-usual. Both groups completed questionnaires after consultation, assessing empowerment, self-efficacy, parent and physician satisfaction, family centredness of care, and experiences using the tool. Additionally, 13 parents were interviewed. RESULTS: Parents who used the WWW-roadmap looked up more information on the Internet. No other differences between parents and physicians were found. In the interviews, parents said that the WWW-roadmap was a useful tool for looking up information, exploring and asking questions, and maintaining a comprehensive picture. CONCLUSION: Using the WWW-roadmap prior to consultation did not improve self-efficacy, satisfaction, or family centredness of care. Findings suggest positive experiences regarding factors determining empowerment, creating conditions for a more equal parent-physician relationship. The WWW-roadmap is useful for parents to explore their needs and find information, but more is needed to support empowerment in consultations.