Author and year

Results

Conclusions/Recommendations

Study limitations

Jarvis et al., 2019 [18]

Most caregiver strategies were compensatory, more than half (60%) involving support for relationships. In contrast, strategies that address the child’s natural environment (12%), services (3%), and attitudes of others at home (1%) were described less frequently. Similar issues were identified for caregivers whose children received (versus did not receive) rehabilitation services from the PICU.

The study’s results show that caregivers can identify corrective and compensatory strategies to support their children’s participation at home during the initial phase of recovery from a critical illness, but the compensatory strategies are limited.

The results highlight the importance of educational activities for caregivers and suggest some potential areas for this action during PICU hospitalization for children with critical illnesses and near their discharge from the unit.

Further studies are necessary to determine whether the results in functional recovery differ according to age and subgroups of diseases, e.g., history of prior chronic disease.

Absence of the caregivers’ profile, limiting the results’ generalization.

Absence of information on the use of rehabilitation after discharge from the PICU.

Use of print forms with limited space for detailed description of answers.

Reductionist coding strategy for the environmental dimension, failing to adequately describe the support from caregivers.

McDougall, Bedell, and Wright, 2013 [19]

Strong internal consistency and internal structure validity were demonstrated for the CASP report for patients and parents. The report’s factor structure was similar to that of parents’ report in this and other studies. Children reported slightly higher activity/participation compared to their parents. Significant differences in the CASP scores were found between various groups of conditions and disabilities.

The versions of the CASP for children and parents appear to measure activity and participation similarly enough to guarantee the use of the children’s report alone when their perspectives are of primary interest.

Use of a predominantly English-speaking sample of young people 11 to 17 years of age with chronic diseases and disabilities.

Further studies are necessary to evaluate test-retest reliability, concurrent and convergent validity, and to examine in greater detail the discriminant validity and differences in reliability and mean values for young parents. The response capacity according to the youngsters’ and parents’ reports also needs to be studied.

Gandhi et al., 2014 [20]

The results of HRQoL in CSHN in seven of the eight domains (except personality) were significant compared to children without special health needs (p <0.05). This study shows a useful approach for comparing the concepts in the items of the three instruments and can generate item databases for a pediatric population.

The ICF-CY serves as a useful structure for comparing the concepts of items in the three instruments from pediatric HRQoL and for generating item databases for a pediatric population.

The study’s findings cannot be generalized because it uses a cross-sectional design in a specific population.

In addition, it only includes the researchers’ perspective and does not include the parents’ and children’s perspectives, thus weakening the content validity.

The response rate was only 30% of the interviewees, due mainly to the study’s duration.

McDougall et al., 2014 [21]

The authors identified factors negatively correlated with QoL, including pain and other physical and emotional symptoms, and positively correlated with QoL, such as scholastic performance, spirituality, social support for the family, and school belonging and safety. Family functioning was positively correlated and children’s social anxiety, and environmental barriers were negatively correlated with the parents’ perception of their children’s QoL.

The ICF structure and modified ICF model that was applied to study overall QoL of children with chronic conditions in this study extend far beyond the consideration of physical disabilities and functional limitations of individuals with chronic conditions, although pediatric rehabilitation services tend to focus on these aspects of children’s and adolescents’ life.

The findings help justify the provision of services aimed at improving other dimensions of life, such as the child’s or adolescent’s emotional well-being and the family’s well-being, as well as to provide additional support such as spiritual care for parents and their families and the defense of school and community environments in which the children and adolescents with chronic conditions can flourish and develop all their potential.

The study’s findings cannot be generalized because it uses a cross-sectional design with data from a longitudinal study.

Further studies are needed to unveil the complex interrelations between functioning, contextual factors, and self-rated quality of life over time, for example, relations between activity and participation and self-rated quality of life.

Petersson et al., 2013 [22]

The authors identified 290 significant concepts linked to 88 categories in the ICF-CJ classification with 29 categories for the physical function components, 48 categories of activities and participation components, and 11 categories of environmental factor components. No concept was linked to the physical structure component. The comparison showed that the items in the HRQoL instrument corresponded mainly to the activity domain and less to environmental factors.

The diversity of the various instruments becomes clear when the contents of the HRQoL instruments are coded by ICF.

Comparison of the HRQoL instruments based on ICF-CY provides information that can help health professionals select an adequate instrument for measuring HRQoL.

The study has various limitations. The instruments compared in this study measure health-related quality of life or HRQoL, which makes the comparison complicated. In addition, the instruments assess different dimensions, and the number of items varies between the instruments, from 6 to 87. Linkage revealed that the categories were addressed differently by the instruments, suggesting difficulty in use of the ICF for distinguishing some categories. A final limitation is that the instruments reviewed in this study only refer to the children’s reports.

Rast and Labruyere, 2020 [23]

93 females and 119 males were included in the study (mean age 10 years and 9 months, SD 4 years and 5 months, range 2 years and 1 month to 21 years and 5 months). The five most frequent rehabilitation goals were ICF codes d4500 ‘walking short distances’ (11%), d4200 ‘moving in sitting position’ (9%), d5400 ‘getting dressed’ (7%), d451 ‘climbing up and down stairs’ (6%), and d4153 ‘staying in sitting position (5%). These principal goals varied between subgroups according to the underlying health condition, functional independence, and age.

The study recommends the incorporation of families’ needs when designing future projects and developing new technologies.

The study only evaluated the ICF chapters on mobility and selfcare.

One limitation of this study is that the frequency of rehabilitation goals depends greatly on the specificity of the ICF categories, and the authors attempted to solve the problem by creating two sets of categories to increase the classification’s precision. The linkage of rehabilitation goals to the corresponding ICF category was evaluator- dependent, and no preestablished or published linkage rules were used.

For patients with prolonged hospitalization, the rehabilitation goals were modified over time and included in the analysis, adding more goals to this same category.

The impact of the duration of rehabilitation was not evaluated in the list of priorities.

Fayed et al., 2014 [24]

499 studies met the inclusion criteria, 495 of which had complete information on the hypothetical predictors. Only 36 of 495 studies included a result of activity and participation as part of the study’s evaluation. Univariate and multivariate regression models showed that studies without drugs and the final trial phase (phase IV) had the highest likelihood of including a result of activity and participation. Most of the registered clinical trials for children with chronic medical conditions or trials underway did not include a comprehensive approach for the evaluation of health results, especially drug trials and trials in the initial phase. The measures of results of pediatric clinical trials are delayed in relation to the World Health Organization guidelines for comprehensive health evaluation.

The choice of a drug therapy rather than another therapy generally depends on the consequences for daily functioning, not only the signs and symptoms of the disease or biological outcomes.

The study emphasizes the scarcity of clinical trials in children with chronic conditions that include the results of activity and participation in their evaluation.

Further and more in-depth studies are necessary to understand the reason for not including the results of activity and participation in pediatric clinical trials on chronic conditions.

Leonardi et al., 2012 [25]

A total of 36 children and adolescents (22 in VS, 25 males) were enrolled. The majority developed VS and MCS after a nontraumatic event; mean age was 114.8 months, and mean duration of the disease was 50.1 months. A total of 94 ICF-CJ categories were reported as relevant: 26 were bodily functions, especially mental functioning and mobility structures; nine were physical structures, 32 activities and participation, mainly chapters involving learning, mobility, and selfcare; and 27 environmental factors. Use of the ICF-CY allows obtaining a profile of specific functioning for each child that can be associated with known problems such as loss of brain functions and provision of life support interventions.

Use of the ICF-CY allows obtaining a realistic and specific profile for each child’s functioning.

First report of information based on the ICF on physical disabilities, limitations in activities, and prevalence of environmental facilitators for children and adolescents in VS and MCS.

Application of the ICF in this group may be questionable, since there is no personal involvement of these children in the respective activities. However, the authors contend that this reflects a real-life situation in which these activities cannot be performed, and a complete substitution is necessary.

Another limitation was the use of some categories, especially D550-Eat and D560-Drink to describe eating and hydration. No ICF-CY category focuses clearly on this type of activity as performed by this group.

Two main limitations may have produced a data collection and interpretation bias and need to be acknowledged. The first is associated with the heterogeneous composition of the researchers responsible for the data collection: common training based on ICF with detailed instructions was provided to limit possible differences in the administration of the ICF-CY questionnaires. The second is the sample’s composition, particularly the limited number of cases and the heterogeneity between the two conditions, which does not allow generalization of the results.