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.

Concurrent validity of the Swedish version of the life-space assessment questionnaire

BACKGROUND: The Life-Space Assessment (LSA), developed in the USA, is an instrument focusing on mobility with respect to reaching different areas defined as life-spaces, extending from the room where the person sleeps to mobility outside one's hometown. A newly translated Swedish version of the LSA (LSA-S) has been tested for test-retest reliability, but the validity remains to be tested. The purpose of the present study was to examine the concurrent validity of the LSA-S, by comparing and correlating the LSA scores to other measures of mobility. METHOD: The LSA was included in a population-based study of health, functioning and mobility among older persons in Sweden, and the present analysis comprised 312 community-dwelling participants. To test the concurrent validity, the LSA scores were compared to a number of other mobility-related variables, including the Short Physical Performance Battery (SPPB) as well as "stair climbing", "transfers", "transportation", "food shopping", "travel for pleasure" and "community activities". The LSA total mean scores for different levels of the other mobility-related variables, and measures of correlation were calculated. RESULTS: Higher LSA total mean scores were observed with higher levels of all the other mobility related variables. Most of the correlations between the LSA and the other mobility variables were large (r = 0.5-1.0) and significant at the 0.01 level. The LSA total score, as well as independent life-space and assistive life-space correlated with transportation (0.63, 0.66, 0.64) and food shopping (0.55, 0.58, 0.55). Assistive life-space also correlated with SPPB (0.47). With respect to maximal life-space, the correlations with the mobility-related variables were generally lower (below 0.5), probably since this aspect of life-space mobility is highly influenced by social support and is not so dependent on the individual's own physical function. CONCLUSION: LSA was shown to be a valid measure of mobility when using the LSA total, independent LS or assistive LSA.

The effect of a Computerised Decision Support System (CDSS) on compliance with the prehospital assessment process: results of an interrupted time-series study

BACKGROUND: Errors in the decision-making process are probably the main threat to patient safety in the prehospital setting. The reason can be the change of focus in prehospital care from the traditional "scoop and run" practice to a more complex assessment and this new focus imposes real demands on clinical judgment. The use of Clinical Guidelines (CG) is a common strategy for cognitively supporting the prehospital providers. However, there are studies that suggest that the compliance with CG in some cases is low in the prehospital setting. One possible way to increase compliance with guidelines could be to introduce guidelines in a Computerized Decision Support System (CDSS). There is limited evidence relating to the effect of CDSS in a prehospital setting. The present study aimed to evaluate the effect of CDSS on compliance with the basic assessment process described in the prehospital CG and the effect of On Scene Time (OST). METHODS: In this time-series study, data from prehospital medical records were collected on a weekly basis during the study period. Medical records were rated with the guidance of a rating protocol and data on OST were collected. The difference between baseline and the intervention period was assessed by a segmented regression. RESULTS: In this study, 371 patients were included. Compliance with the assessment process described in the prehospital CG was stable during the baseline period. Following the introduction of the CDSS, compliance rose significantly. The post-intervention slope was stable. The CDSS had no significant effect on OST. CONCLUSIONS: The use of CDSS in prehospital care has the ability to increase compliance with the assessment process of patients with a medical emergency. This study was unable to demonstrate any effects of OST.