Refine
Document Type
- Article (5)
- Doctoral Thesis (1)
Has Fulltext
- yes (6)
Is part of the Bibliography
- no (6)
Keywords
- - (2)
- chronic condition (2)
- transition (2)
- Cerebral palsy (1)
- Emerging adults (1)
- Gesundheitspsychologie (1)
- Lebensqualität (1)
- Mental health (1)
- Psychometrie (1)
- Quality of Life (1)
Institute
Publisher
- MDPI (2)
- BioMed Central (BMC) (1)
- Frontiers Media S.A. (1)
- Wiley (1)
Transition wird bezeichnet als zielgerichteter, geplanter Wechsel der Kinder und Jugendlichen mit chronischen Erkrankungen von dem kindzentrierten zum erwachsenenzentrierten Gesundheitssystem (Blum et al., 1993). Transition soll ein strukturierter, gut implementierter, geplanter und absichtsvoller Prozess sein, welcher die Jugendlichen mit chronischen Erkrankungen, ihre Eltern und die involvierten Gesundheitsexpert*innen befähigt, den Wechsel von der Pädiatrie zur Erwach¬senen¬medizin erfolgreich abzuschließen (Blum et al., 1993; Huang et al., 2014; Kennedy et al., 2007).
Es ist notwendig den Prozess der Transition an die individuellen Bedürfnisse der Jugendlichen anzupassen und somit deren Unterstützung flexibler zu gestalten zu können, um dies zu erreichen, werden entsprechende Instrumente zur Erfassung von Konstrukten in der Transition benötigt. Von besonderem Interesse ist die Transitionsbereitschaft von Jugendlichen mit chronischen Erkrankungen.
Um die individuelle Bereitschaft zur Transition eines Jugendlichen mit chronischer Erkrankung feststellen zu können, fehlen zudem änderungssensitive Instrumente, die zugleich auch allgemein anwendbar sind, sodass eine Vergleichbarkeit zwischen verschiedenen Erkrankungen bzw. Versorgungsbereichen ermöglicht wird. Von diesem methodischen Defizit der Transitionsforschung ausgehend werden in der vorliegenden Arbeit folgende Konstrukte sowie deren Operationalisierung und Erfassung im Kontext der Transition psychometrisch genauer analysiert: gesundheitsbezogene und krankheitsspezifische Lebensqualität, Versorgungszufriedenheit, Transitionskompetenz, Patientenaktivierung und Patienten-empowerment.
Zusammenfassend zeigt sich, dass die Konstrukte krankheitsspezifische Lebens-qualität, Versorgungszufriedenheit, Transitionskompetenz, Patientenaktivierung und Patienten¬empowerment zur Erfassung von transitionsbezogenen Veränderungen bei Jugendlichen mit chronischen Erkrankungen geeignet sind. Lediglich die Erfassung die gesundheitsbezogene Lebensqualität sollte für zukünftige Studien geprüft werden.
We decided to develop a short-form of the CHC-SUN/YHC-SUN, a questionnaire aiming at assessing health care satisfaction of children and adolescents with chronic health conditions. Data analysis was based on samples from three different studies. Item selection involved statistical analysis and expert consensus. For independent validation purposes, we calculated descriptive statistics on single-item and composite-scale levels and applied classic test theory, confirmatory factor analyses, and correlation analysis to investigate the psychometric properties of the final short-form by different types of reliability and validity. Internal consistency (Cronbach’s Alpha) reached values of a = 0.89 (self-report) and a = 0.92 (parents report), split-half reliability values reached 0.85 (self-report) and 0.91 (parents report). Confirmatory factor analysis indicated no sufficient fit for the single factor solution, whereas the solution with three factors and one higher order factor indicated the best overall fit amongst three competing models. Validity of the short-form measure can be assumed, e.g., as indicated by its association with a single-item measure on general health care satisfaction. The short-form measures of the CHC-SUN for parents (CHC-SUN-SF) and the YHC-SUN self-report version for adolescents (YHC-SUN-SF) feature excellent psychometric performances, provide economical assessments, and are easy-to-administer questionnaires. They should be used whenever brief measures are needed for economic reasons.
Background
Adolescents and young adults (AYAs) with chronic conditions face a transfer, defined as an actual shift from paediatric to adult-oriented health care. Transition competence as the self-perceived knowledge, skills and abilities regarding the transition process was considered extremely useful.
Aim
This study was designed to investigate the impact of transition competence before and after the transfer on disease-specific quality of life (QoL) and health care satisfaction of AYAs with diabetes.
Results
In total, a sample of N = 90 AYAs with diabetes self-reported their transition competence, diabetes-specific QoL and satisfaction with care. Multiple linear regressions were used to analyse the impact of transition competence on satisfaction with care and QoL. Transition competence positively influenced the outcomes of satisfaction with care and QoL.
Conclusion
Young adults with diabetes showed higher transition competence scores than adolescents with diabetes.
Background
While evidence concerning Quality of Life (QoL) in youth with cerebral palsy (CP) in comparison to the general population has been accumulating, there is a lack of studies exploring differences on a wider range of positive and negative mental health outcomes in emerging adults.
Methods
This binational case control study is part of the SPARCLE cohort study on QoL and participation of youth with CP. QoL (WHOQOL-BREF), depression (PHQ-9), anxiety (GAD-7) and self-efficacy (GSE) were assessed in 198 emerging adults with CP and 593 emerging adults from the general population, matched for country of residence, age and gender. ANCOVAs with impairment and pain as covariates were run.
Results
Similar levels of QoL were found in both samples, except for the environmental domain, with better QoL for emerging adults with CP compared to the general population. There were significant descriptive differences regarding depression with worse levels in the CP sample, however, also worse levels of self-efficacy. Pain as a covariate had a significant negative impact on all measures, leading to poorer self-efficacy while worsening depression and anxiety; impairment had a significant worsening impact on physical QoL and self-efficacy only.
Conclusion
Similar expressions of mental health outcomes in emerging adults with CP and the general population indicate the high adaptive capability of emerging adults with CP.
Background: Young people with chronic health conditions and disabilities rely on the healthcare system to maintain their best possible health. The appropriate delivery and utilization of healthcare services are key to improve their autonomy, self-efficacy and employment outcomes. The research question of our study is directed toward investigating if poor availability and accessibility of healthcare services in general, as identified by unmet needs in healthcare, are associated with dissatisfaction with healthcare.
Methods: Within a European multicenter observational study, 357 young adults with cerebral palsy aged 19–28 were included. We assessed special healthcare needs, utilization of healthcare services, and satisfaction with healthcare applying the short-form of the YHC-SUN-SF, environmental and social variables (EAEQ) as well as indicators for severity of condition and functionality (e.g., GMFCS) of these participants based on a self-, assisted self- or proxy-reports. We used correlation analyses to explore associations between satisfaction with healthcare and respective indicators related to availability and accessibility of healthcare services as well as severity of the condition. In addition, we included reference values for satisfaction with heath care from young adults with various chronic conditions assessed within population-based surveys from some of the European countries included in the study.
Results: We identified several unmet healthcare needs, especially for widely used and established services (e.g., physical therapy). Satisfaction with healthcare (YHC-SUN-SF general and subscale scores) was moderate to high and almost consistently better for the sample of young adults with cerebral palsy as compared to reference values for young adults with various chronic conditions assessed within general population surveys). Correlation coefficients between satisfaction with healthcare and utilization of services and (unmet) healthcare needs were low, also with different indicators for severity of the condition or functionality.
Conclusion: Young adults with cerebral palsy reports of unmet healthcare needs varied largely but showed substantial deficits in some aspects. This seems to have no impact on the satisfaction with healthcare those patients currently receive. We conclude that these are two different constructs and somewhat independent indicators to evaluate the quality of healthcare. Clinicians and other practitioners should consider this distinction when monitoring patient needs in their daily practice.