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“Blood for Blood”? Personal Motives and Deterrents for Blood Donation in the German Population
(2021)
Quality of life (QoL) is a core patient-reported outcome in healthcare research, alongside primary clinical outcomes. A conceptual, operational, and psychometric elaboration of QoL in the context of TM is needed, because standardized instruments to assess QoL do not sufficiently represent essential aspects of intended outcomes of telemedical applications (TM). The overall aim is to develop an instrument that can adequately capture QoL in TM. For that purpose, an extended working model of QoL will be derived. Subsequently, an instrument will be developed and validated that captures those aspects of QoL that are influenced by TM. The initial exploratory study section includes (a) a systematic literature review, (b) a qualitative survey for concept elicitation, and (c) pre-testings using cognitive debriefings with patients and an expert workshop. The second quantitative section consists of an online expert survey and two patient surveys for piloting and validation of the newly developed instrument. The resulting questionnaire will assess central experiences of patients regarding telemedical applications and its impact on QoL more sensitively. Its use as adjunct instrument will lead to a more appropriate evaluation of TM and contribute to the improvement of care tailored to patients’ individual needs.
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.
This study explored the evidence of validity of internal structure of the 12-item Functional Assessment of Chronic Illness Therapy—Spiritual Wellbeing Scale (FACIT-Sp-12) in Brazilian adolescents with chronic health conditions. The study involved 301 Brazilian adolescents with cancer, type 1 diabetes mellitus, or cystic fibrosis. Exploratory Factor Analysis (EFA), Confirmatory Factor Analysis (CFA), and Item Response Theory (IRT) were used to test the internal structure. Reliability was determined with Cronbach’s Alpha and McDonald’s Omega. The EFA suggested a one-dimensional scale structure in contrast to the original 2-factor model or the 3-factor model which were not reproduced in the current CFA. All quality indicators for the EFA one-factor exceeded the required criteria (FDI = 0.97, EAP = 0.97, SR = 3.96 and EPTD = 0.96, latent GH = 0.90. and the observed GH = 0.85). The FACIT-Sp-12 for adolescents yielded strong evidence for a 1-factor model and with good reliability.
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.
Introduction: To maintain a sufficient donor pool, deferred first-time donors (FTD) should be motivated to return for blood donation. This pilot study investigates how deferral affects momentary mood, satisfaction with the donation process, and subsequent return behavior to examine their potential for motivating (deferred) FTD. Methods: All of the subjects (n = 96) completed a first questionnaire (A1) before pre-donation assessment. Deferred FTD (n = 22) were asked to complete a second questionnaire (A2) immediately after deferral, while non-deferred FTD (n = 74) filled in the second questionnaire (A3) after blood donation. The impact of deferral, momentary mood, and satisfaction with the donation process on return behavior within 12 months was tested by calculating two path analyses, controlling for sex and age. Results: Mood (p < 0.001) and satisfaction with social aspects of the donation process (p = 0.01) were decreased after deferral. Deferred FTD were less likely than non-deferred FTD to return to the blood donation center within 12 months (60.8 vs. 36.4%; p = 0.043). However, path analyses revealed that deferral effects on mood and satisfaction were not connected to return behavior. Instead, age had a significant influence on return behavior (p < 0.05) such that, overall, non-returning FTD were older than returning FTD, regardless of their deferral status. Conclusion: Our findings suggest that mood and satisfaction with the donation process are directly affected by deferral but not clearly responsible for low return rates. It seems promising to embed these variables in established health behavior models in further studies to increase the return rates of deferred FTD.
Purpose
The continuum of mental health/illness has been subject to scientific debate for decades. While current research indicates that continuum belief interventions can reduce mental health stigma and improve treatment seeking in affected populations, no study has yet systematically examined measures of continuum beliefs.
Methods
This preregistered systematic review summarizes measures of continuum beliefs. Following the PRISMA statement, three scientific databases (PubMed, PsycInfo and PsycArticles via EBSCOhost, Web of Science) are searched, instruments are described and discussed regarding their scope, and methodological quality.
Results
Overall, 7351 records were identified, with 35 studies reporting relevant findings on 11 measures. Most studies examined general population samples and used vignette-based measures. Schizophrenia and depression were most commonly examined, few studies focused on dementia, ADHD, OCD, eating disorders, and problematic alcohol use, or compared continuum beliefs across disorders. Validity was very good for most measures, but reliability was rarely tested. Measures mostly assessed beliefs in the normality of mental health symptoms or the normality of persons with such symptoms but rarely nosological aspects (i.e., categorical v continuous conceptualization of mental disorders).
Conclusions
Current research provides psychometrically sound instruments to examine continuum beliefs for a variety of mental disorders. While studies suggest utility for general population samples and mental health professionals, more research is necessary to corroborate findings, for instance, regarding age (e.g., in adolescents), gender, or type of mental disorder. Future research should also compare self-report ratings, and vignette-based measures, include measures of nosological concepts to fully grasp the continuum concept of mental illness.
Preregistration
PROSPERO: CRD42019123606.
To a large extent health-related quality of life (HRQoL) is a product of life-course experiences. Therefore, we examined employment, marital, and reproductive life-course typologies as predictors of HRQoL in women and men. To determine life course clusters, sequence and cluster analysis were performed on the annual (waves 1990–2019) employment, marital, and children in household states of the German Socio-Economic Panel data (N = 8,998; age = 53.57, 52.52% female); separately for men and women. Using hierarchical linear regression analyses, and Tukey HSD post-hoc tests, associations between clusters and change in life satisfaction, subjective mental, and physical health were examined. Five life-course clusters were identified in the female and six in the male sample. Life courses differed greatly across gender regarding employment aspects (e.g., men generally work full-time vs. women underwent frequent transitions). The family aspects appeared similar – e.g., ‘starting a family’ or ‘marital separation’ clusters – but still differed in the particulars. Life course typologies were related to distinct patterns of HRQoL. For instance, both for men and women the ‘separated’ clusters, as well as the male ‘entering non-employment’ cluster were associated with a steeper decline in HRQoL. However, change in subjective mental health showed few associations. Distinct types of life courses and differential associations with sociodemographic background and HRQoL emerged for women and men. The analyses reveal a burden on individuals who experienced marital separation, and non-employment and thus present important target groups for health prevention, e.g., for physical health problems.
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.