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.

Should I stay or should I go – Factors associated with hospitalization risk among older persons in Sweden

An increasingly older population will most likely lead to greater demands on the health care system, as older age is associated with an increased risk of having acute and chronic conditions. The number of diseases or disabilities is not the only marker of the amount of health care utilized, as persons may seek hospitalization without a disease and/or illness that requires hospital healthcare. Hospitalization may pose a severe risk to older persons, as exposure to the hospital environment may lead to increased risks of iatrogenic disorders, confusion, falls and nosocomial infections, i.e., disorders that may involve unnecessary suffering and lead to serious consequences. Aims: The overall aim of this thesis was to describe and explore individual trajectories of cognitive development in relation to hospitalization and risk factors for hospitalization among older persons living in different accommodations in Sweden and to explore older persons' reasons for being transferred to a hospital. Methods: The study designs were longitudinal, prospective and descriptive, and both quantitative and qualitative methods were used. Specifically, latent growth curve modelling was used to assess the association of cognitive development with hospitalization. The Cox proportional hazards regression model was used to analyse factors associated with hospitalization risk overtime. In addition, an explorative descriptive design was used to explore how home health care patients experienced and perceived their decision to seek hospital care. Results: The most common reasons for hospitalization were cardiovascular diseases, which caused more than one-quarter of first hospitalizations among the persons living in ordinary housing and nursing home residents (NHRs). The persons who had been hospitalized had a lower mean level of cognitive performance in general cognition, verbal, spatial/fluid, memory and processing speed abilities compared to those who had not been hospitalized. Significantly steeper declines in general cognition, spatial/fluid and processing speed abilities were observed among the persons who had been hospitalized. Cox proportional hazards regression analysis showed that the number of diseases, number of drugs used, having experienced a fall and being assessed as malnourished according to the Mini Nutritional Assessment scale were related to an increased hospitalization risk among the NHRs. Among the older persons living in ordinary housing, the risk factors for hospitalization were related to marital status, i.e., unmarried persons and widows/widowers had a decreased hospitalization risk. In addition, among social factors, receipt of support from relatives was related to an increased hospitalization risk, while receipt of support from friends was related to a decreased risk. The number of illnesses was not associated with the hospitalization risk for older persons in any age group or for those of either sex, when controlling for other variables. The older persons who received home health care described different reasons for their decisions to seek hospital care. The underlying theme of the home health care patients’ perceptions of their transfer to a hospital involved trust in hospitals. This trust was shared by the home health care patients, their relatives and the home health care staff, according to the patients. Conclusions: This thesis revealed that middle-aged and older persons who had been hospitalized exhibited a steeper decline in cognition. Specifically, spatial/fluid, processing speed, and general cognitive abilities were affected. The steeper decline in cognition among those who had been hospitalized remained even after controlling for comorbidities. The most common causes of hospitalization among the older persons living in ordinary housing and in nursing homes were cardiovascular diseases, tumours and falls. Not only health-related factors, such as the number of diseases, number of drugs used, and being assessed as malnourished, but also social factors and marital status were related to the hospitalization risk among the older persons living in ordinary housing and in nursing homes. Some risk factors associated with hospitalization differed not only between the men and women but also among the different age groups. The information provided in this thesis could be applied in care settings by professionals who interact with older persons before they decide to seek hospital care. To meet the needs of an older population, health care systems need to offer the proper health care at the most appropriate level, and they need to increase integration and coordination among health care delivered by different care services.

Using health-related quality of life instruments for children with long-term conditions : On the basis of a national quality registry system

Introduction: There has been a continuous development of new technologies in healthcare that are derived from national quality registries. However, this innovation needs to be translated into the workflow of healthcare delivery, to enable children with long-term conditions to get the best support possible to manage their health during everyday life. Since children living with long-term conditions experience different interference levels in their lives, healthcare professionals need to assess the impact of care on children’s day-to-day lives, as a complement to biomedical assessments. Aim: The overall aim of this thesis was to explore and describe the use of instruments about health-related quality of life (HRQOL) in outpatient care for children with long-term conditions on the basis of a national quality registry system. Methods: The research was conducted by using comparative, cross-sectional and explorative designs and data collection was performed by using different methods. The questionnaire DISABKIDS Chronic Generic Measure -37 was used as well as semi-structured interviews and video-recordings from consultations. Altogether, 156 children (8–18 years) and nine healthcare professionals participated in the studies. Children with Type 1 Diabetes (T1D) (n 131) answered the questionnaire DISABKIDS and children with rheumatic diseases, kidney diseases and T1D (n 25) were interviewed after their consultation at the outpatient clinic after the web-DISABKIDS had been used. In total, nine healthcare professionals used the HRQOL instrument as an assessment tool during the encounters which was video-recorded (n 21). Quantitative deductive content analysis was used to describe content in different HRQOL instruments. Statistical inference was used to analyse results from DISABKIDS and qualitative content analysis was used to analyse the interviews and video-recordings. Results: The findings showed that based on a biopsychosocial perspective, both generic and disease-specific instruments should be used to gain a comprehensive evaluation of the child’s HRQOL. The DISABKIDS instrument is applicable when describing different aspects of health concerning children with T1D. When DISABKIDS was used in the encounters, children expressed positive experiences about sharing their results with the healthcare professional. It was discovered that different approaches led to different outcomes for the child when the healthcare professionals were using DISABKIDS during the encounter. When an instructing approach is used, the child’s ability to learn more about their health and how to improve their health is limited. When an inviting or engaging approach is used by the professional, the child may become more involved during the conversations. Conclusions: It could be argued that instruments of HRQOL could be used as a complement to biomedical variables, to promote a biopsychosocial perspective on the child’s health. According to the children in this thesis, feedback on their results after answering to web-DISABKIDS is important, which implies that healthcare professionals need to prioritize time for discussions about results from HRQOL instruments in the encounters. If healthcare professionals involve the child in the discussion of the results of the HRQOL, misinterpreted answers could be corrected during the conversation. Concurrently, this claims that healthcare professionals invite and engage the child.