Comparing children's self-report instruments for health-related quality of life using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY)

Children with chronic conditions often experience a long treatment which can be complex and negatively impacts the child's well-being. In planning treatment and interventions for children with chronic conditions, it is important to measure health-related quality of life (HrQoL). HrQoL instruments are considered to be a patient-reported outcome measure (PROM) and should be used in routine practice. Purpose: The aim of this study was to compare the content dimensions of HrQoL instruments for children's self-reports using the framework of ICF-CY. Method: The sample consist of six instruments for health-related quality of life for children 5 to 18 years of age, which was used in the Swedish national quality registries for children and adolescents with chronic conditions. The following instruments were included: CHQ-CF, DCGM-37, EQ-5D-Y, KIDSCREEN-52, Kid-KINDL and PedsQL 4.0. The framework of the ICF-CY was used as the basis for the comparison. Results: There were 290 meaningful concepts identified and linked to 88 categories in the classification ICF-CY with 29 categories of the component body functions, 48 categories of the component activities and participation and 11 categories of the component environmental factors. No concept were linked to the component body structures. The comparison revealed that the items in the HrQoL instruments corresponded primarily with the domains of activities and less with environmental factors. Conclusions: In conclusion, the results confirm that ICF-CY provide a good framework for content comparisons that evaluate similarities and differences to ICF-CY categories. The results of this study revealed the need for greater consensus of content across different HrQoL instruments. To obtain a detailed description of children's HrQoL, DCGM-37 and KIDSCREEN-52 may be appropriate instruments to use that can increase the understanding of young patients' needs.

Agenda för samverkan eller verksamhetens agenda? Om professionellas erfarenheter av samverkan enligt samordnad individuell plan (SIP)

Agenda for collaboration or an agency agenda? Professionals’ experiences of colla­boration according to a coordinated individual plan (CIP) An increasing number of children and adolescents develop complex needs that require simultaneous action by different professionals. Several reports state that efforts for these children and adolescents have become increasingly specialized and fragmented. Since 2010, there are statutory requirements for collaboration according to a coordinated individual plan (SIP) between health care and social services. Pre-school and school can after regional agreement be involved in the co-ordination as equal partner. Collaboration in line with CIP is expected to offset the fragmentation for benefit of the service users’ ability to monitor and comprehend interventions. The aim was to investigate professionals’ experiences of CIP. The study consists of qualitative analysis of 12 focus group interviews with a total of 71 staff with different professions in health care, education and social services about their experiences of CIP. The results indicate that the participants act according to their core mission: nurturing, teaching and investigation. Two main categories with four sub-categories each appeared in the analysis. The main category, hindering factors, contains the categories: different mandates and requirements, requirements for presence initiative, questioning and censure, and timelines and prioritization. The main category of facilitating factors contains the categories: similar interpretation of common agreement, mutual respect and shared learning, common terminology and documentation, and willingness to collaborate. The analysis indicate that CIP was perceived as alternating between, on the one hand, a pro-active and service-focused tool, and on the other hand, a competing and compelling professional instrument.