Transition competence as an indicator of health outcomes related to transition.

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.

Measuring context that matters: validation of the modular Tele-QoL patient-reported outcome and experience measure.

PURPOSE: A setting-sensitive instrument for assessing Quality of Life (QoL) in Telemedicine (TM) was unavailable. To close this gap, a content-valid "add-on" measure was developed. In parallel, a brief index was derived featuring six items that summarise the main content of the multidimensional assessment. After pre- and pilot-testing, the psychometric performance of the final measures was investigated in an independent validation study. METHODS: The questionnaires were applied along with other standardised instruments of similar concepts as well as associated, yet disparate concepts for validation purposes. The sample consisted of patients with depression or heart failure, with or without TM (n = 200). Data analyses were aimed at calculating descriptive statistics and testing the psychometric performance on item, scale, and instrument level, including different types of validity and reliability. RESULTS: The proposed factor structure of the multidimensional Tele-QoL measure has been confirmed. Reliability coefficients for internal consistency, split-half, and test-retest reliability of the subscales and index reached sufficient values. The Tele-QoL subscales and the index demonstrated Rasch scalability. Validity of both instruments can be assumed. Evidence for discriminant construct validity was provided. Known-groups validity was indicated by respective score differences for various classes of disease severity. CONCLUSION: Both measures show convincing psychometric properties. The final multidimensional Tele-QoL assessment consists of six outcome scales and two impact scales assessing (un-)intended effects of TM on QoL. In addition, the Tele-QoL index provides a short alternative for outcome assessment. The Tele-QoL measures can be used as complementary modules to existing QoL instruments capturing healthcare-related aspects of QoL from the patients' perspective.

The Seeking Mental Health Care model: prediction of help-seeking for depressive symptoms by stigma and mental illness representations.

BACKGROUND: Only about half the people with depression seek professional health care services. To constitute the different predictors and associating variables of health care utilisation, we model the process and aim to test our hypothesised Seeking Mental Health Care Model. The model includes empirical influences on the help-seeking process to predict actual behaviour and incorporates superordinate (stigma, treatment experiences) as well as intermediate attitudinal variables (continuum and causal beliefs, depression literacy and self-efficacy). METHOD: All variables are examined in an online study (baseline, three- and six-month follow-up). The sample consisted of adults with depressive symptoms (PHQ-9 sum score ≥ 8), currently not receiving mental health care treatment. To examine the prediction of variables explaining help-seeking behaviour, a path model analysis was carried out (lavaan package, software R). RESULTS: Altogether, 1368 participants (Mage = 42.38, SDage = 15.22, 65.6% female) were included, 983 participating in at least one follow-up. Model fit was excellent (i.e., RMSEA = 0.059, CFI = 0.989), and the model confirmed most of the hypothesised predictions. Intermediary variables were significantly associated with stigma and experiences. Depression literacy (ß = .28), continuum beliefs (ß = .11) and openness to a balanced biopsychosocial causal model (ß = .21) significantly influenced self-identification (R2 = .35), which among the causal beliefs and self-efficacy influenced help-seeking intention (R2 = .10). Intention (ß = .40) prospectively predicted help-seeking behaviour (R2 = .16). CONCLUSION: The Seeking Mental Health Care Model provides an empirically validated conceptualisation of the help-seeking process of people with untreated depressive symptoms as a comprehensive approach considering internal influences. Implications and open questions are discussed, e.g., regarding differentiated assessment of self-efficacy, usefulness of continuum beliefs and causal beliefs in anti-stigma work, and replication of the model for other mental illnesses. TRIAL REGISTRATION: German Clinical Trials Register: DRKS00023557. Registered 11 December 2020. World Health Organization, Universal Trial Number: U1111-1264-9954. Registered 16 February 2021.

[Life events related to the German reunification and their associations with psychosocial health in a sample of northeast Germany]. / Nach-Wende-Ereignisse und deren Assoziation mit psychosozialer Gesundheit in einer nordostdeutschen Stichprobe.

Objectives: The aim of the present study was to investigate (1) the type and frequency of reported life events of the East German population related to the German reunification and (2) their associations with psychosocial health. Methods: Data of 2247 participants of the Study of Health in Pomerania was used.These qualitative responses were analysed using quantitative content analysis. Their associations with subjective physical and mental health, optimism, social support, depressive symptoms, and chronic stress were examined. Results: Eight life event categories were identified (education, employment-related changes, material changes, new opportunities, personal life events, politics, separations, reunifications). Especially, experiencing new opportunities was associated with a higher level of optimism as well as a lower level of depressive symptoms and chronic stress. Conclusions: In this study, events frequently described in the literature (e.g., employment-related and social changes) were confirmed and systematized.The observed associations of these events with psychosocial factors should be examined further in future studies.

Quality of life and mental health in emerging adults with cerebral palsy compared to the general population.

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.

Continuum beliefs and mental illness stigma: a systematic review and meta-analysis of correlation and intervention studies.

BACKGROUND: Promulgating a continuum model of mental health and mental illness has been proposed as a way to reduce stigma by decreasing notions of differentness. This systematic review and meta-analysis examines whether continuum beliefs are associated with lower stigma, and whether continuum interventions reduce stigma. METHODS: Following a pre-defined protocol (PROSPERO: CRD42019123606), we searched three electronic databases (PubMed, Web of Science, and PsycINFO) yielding 6726 studies. After screening, we included 33 studies covering continuum beliefs, mental illness, and stigma. Of these, 13 studies were included in meta-analysis. RESULTS: Continuum beliefs are consistently associated with lower stigma. Interventions were effective at manipulating continuum beliefs but differ in their effects on stigmatising attitudes. CONCLUSIONS: We discuss whether and to what extent attitudes towards people with mental illness can be improved by providing information on a mental health-mental illness continuum. It appeared to be relevant whether interventions promoted a feeling of 'us' and a process of identification with the person with mental illness. We discuss implications for the design of future interventions.

Same same-but different: using qualitative studies to inform concept elicitation for quality of life assessment in telemedical care: a request for an extended working model.

BACKGROUND: Although telemedical applications are increasingly used in the area of both mental and physical illness, there is no quality of life (QoL) instrument that takes into account the specific context of the healthcare setting. Therefore, the aim of this study was to determine a concept of quality of life in telemedical care to inform the development of a setting-sensitive patient-reported outcome measure. METHODS: Overall, 63 semi-structured single interviews and 15 focus groups with 68 participants have been conducted to determine the impact of telemedical care on QoL. Participants were patients with chronic physical or mental illnesses, with or without telemedicine supported healthcare as well as telemedical professionals. Mayring's content analysis approach was used to encode the qualitative data using MAXQDA software. RESULTS: The majority of aspects that influence the QoL of patients dealing with chronic conditions or mental illnesses could be assigned to an established working model of QoL. However, some aspects that were considered important (e. g. perceived safety) were not covered by the pre-existing domains. For that reason, we re-conceptualized the working model of QoL and added a sixth domain, referred to as healthcare-related domain. CONCLUSION: Interviewing patients and healthcare professionals brought forth specific aspects of QoL evolving in telemedical contexts. These results reinforce the assumption that existing QoL measurements lack sensitivity to assess the intended outcomes of telemedical applications. We will address this deficiency by a telemedicine-related re-conceptualization of the assessment of QoL and the development of a suitable add-on instrument based on the resulting category system of this study.

How can the utilisation of help for mental disorders be improved? A quasi-experimental online study on the changeability of stigmatising attitudes and intermediate variables in the process of utilisation.

BACKGROUND: Epidemiological studies show that even in highly developed countries many people with depression do not seek help for their mental health issues, despite promising prevention approaches encouraging people to seek help and reduce self-stigma. Therefore, an anti-stigma intervention study to support help-seeking behaviour will be developed on the basis of the newly explicated "Seeking Mental Health Care Model". METHODS: A quasi-experimental online study will be carried out to assess the effect of different intervention variables relevant for the help-seeking process. The study is conceived as a fractional factorial design. Participants will be screened for depressive complaints (PHQ-9 sum score ≥ 8) and current psychiatric/psychotherapeutic treatment. After baseline assessment the participants will be randomly allocated into one of the 24 study groups receiving different combinations of the vignette-based intervention aiming to reduce stigma and support help-seeking. Next, relevant outcome measures will be administered a second time. In a 3- and 6-month follow-up help-seeking behaviour will be measured. Gamified elements and avatar-choice techniques will be used to heighten study immersion and adherence. DISCUSSION: On the basis of the project results, promising research and intervention perspectives can be developed. Results, firstly, allow for a more detailed empirical investigation and conceptualisation of the stages of mental health care utilisation, as well as an examination of theoretical approaches to stigmatisation. Secondly, our online study could provide insights for an evidence-based design and evaluation of online interventions for people with a mental illness. TRIAL REGISTRATION: German Clinical Trials Register: DRKS00023557 . Registered 11 December 2020. World Health Organization, Universal Trial Number: U1111-1264-9954. Registered 16 February 2021.

The interplay of gender, social context, and long-term unemployment effects on subjective health trajectories.

BACKGROUND: While a strong negative impact of unemployment on health has been established, the present research examined the lesser studied interplay of gender, social context and job loss on health trajectories. METHODS: Data from the German Socio-Economic Panel was used, which provided a representative sample of 6838 participants. Using latent growth modelling the effects of gender, social context (East vs. West Germans), unemployment (none, short-term or long-term), and their interactions were examined on health (single item measures of self-rated health and life satisfaction respectively). RESULTS: Social context in general significantly predicted the trajectories of self-rated health and life satisfaction. Most notably, data analysis revealed that West German women reported significantly lower baseline values of self-rated health following unemployment and did not recover to the levels of their East German counterparts. Only long-term, not short-term unemployment was related to lower baseline values of self-rated health, whereas, in relation to baseline values of life satisfaction, both types of unemployment had a similar negative effect. CONCLUSIONS: In an economic crisis, individuals who already carry a higher burden, and not only those most directly affected economically, may show the greatest health effects.

Utilizing Health Behavior Change and Technology Acceptance Models to Predict the Adoption of COVID-19 Contact Tracing Apps: Cross-sectional Survey Study.

BACKGROUND: To combat the global COVID-19 pandemic, contact tracing apps have been discussed as digital health solutions to track infection chains and provide appropriate information. However, observational studies point to low acceptance in most countries, and few studies have yet examined theory-based predictors of app use in the general population to guide health communication efforts. OBJECTIVE: This study utilizes established health behavior change and technology acceptance models to predict adoption intentions and frequency of current app use. METHODS: We conducted a cross-sectional online survey between May and July 2020 in a German convenience sample (N=349; mean age 35.62 years; n=226, 65.3% female). To inspect the incremental validity of model constructs as well as additional variables (privacy concerns, personalization), hierarchical regression models were applied, controlling for covariates. RESULTS: The theory of planned behavior and the unified theory of acceptance and use of technology predicted adoption intentions (R2=56%-63%) and frequency of current app use (R2=33%-37%). A combined model only marginally increased the predictive value by about 5%, but lower privacy concerns and higher threat appraisals (ie, anticipatory anxiety) significantly predicted app use when included as additional variables. Moreover, the impact of perceived usefulness was positive for adoption intentions but negative for frequency of current app use. CONCLUSIONS: This study identified several theory-based predictors of contact tracing app use. However, few constructs, such as social norms, have a consistent positive effect across models and outcomes. Further research is required to replicate these observations, and to examine the interconnectedness of these constructs and their impact throughout the pandemic. Nevertheless, the findings suggest that promulgating affirmative social norms and positive emotional effects of app use, as well as addressing health concerns, might be promising strategies to foster adoption intentions and app use in the general population.

In the Mood for a Blood Donation? Pilot Study about Momentary Mood, Satisfaction, and Return Behavior in Deferred First-Time Donors.

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.

Self-labeling as having a mental or physical illness: the effects of stigma and implications for help-seeking.

PURPOSE: Personal and perceived stigma can hinder persons in appraising their symptoms as constituting part of a mental illness (self-labeling), an important early step in the help-seeking process. This study examines the impact of personal and perceived stigma on self-labeling and provides prospective data on the possible connections between self-labeling and help-seeking behavior. METHODS: Personal stigmatizing attitudes, perceived stigma and self-labeling behavior as well as their statistical connections were cross-sectionally investigated in a community sample of 207 participants with a present untreated mental health problem. We further conducted prospective analyses to investigate possible associations between self-labeling and help-seeking behavior at 3 and 6 month follow-ups. Socio-demographics, previous treatment and depression symptoms were also measured as potential confounders. RESULTS: Personal stigmatizing attitudes were significantly more pronounced in respondents who self-labeled as physically compared to mentally ill, while group differences in levels of perceived stigma were not. Self-labeling as physically or mentally ill increased the likelihood of seeking help from the health service provider deemed most suitable for that label (physical: GP, p <0.05; mental: MHP, p < 0.1) compared to persons who applied no self-label. CONCLUSIONS: The findings suggest that personal stigmatizing attitudes-rather than perceived stigma-impact on self-labeling, and highlight the need for interventions that assist persons with mental illness in overcoming those attitudes. They also underscore the possible impact of self-labeling in the help-seeking process and underline the important role of GPs in mental health care. Further, preferably epidemiological research into the matter would be desirable.

Stigma as a barrier to recognizing personal mental illness and seeking help: a prospective study among untreated persons with mental illness.

It is unclear to what extent failure to recognize symptoms as potential sign of a mental illness is impeding service use, and how stigmatizing attitudes interfere with this process. In a prospective study, we followed a community sample of 188 currently untreated persons with mental illness (predominantly depression) over 6 months. We examined how lack of knowledge, prejudice and discrimination impacted on self-identification as having a mental illness, perceived need, intention to seek help, and help-seeking, both with respect to primary care (visiting a general practitioner, GP) and specialist care (seeing a mental health professional, MHP). 67% sought professional help within 6 months. Fully saturated path models accounting for baseline depressive symptoms, previous treatment experience, age and gender showed that self-identification predicted need (beta 0.32, p < 0.001), and need predicted intention (GP: beta 0.45, p < 0.001; MHP: beta 0.38, p < 0.001). Intention predicted service use with a MHP after 6 months (beta 0.31, p < 0.01; GP: beta 0.17, p = 0.093). More knowledge was associated with more self-identification (beta 0.21, p < 0.01), while support for discrimination was associated with lower self-identification (beta - 0.14, p < 0.05). Blaming persons with mental illness for their problem was associated with lower perceived need (beta - 0.16, p < 0.05). Our models explained 37% of the variance of seeking help with a MHP, and 33% of help-seeking with a GP. Recognizing one's own mental illness and perceiving a need for help are impaired by lack of knowledge, prejudice, and discrimination. Self-identification is a relevant first step when seeking help for mental disorders.

Differential effect of a patient-education transition intervention in adolescents with IBD vs. diabetes.

Patient education programs (PEPs) to improve disease management are part of standard and regular treatment in adolescents with diabetes. In Germany, youth with inflammatory bowel disease (IBD) receive individual counseling but not PEPs in group settings. Generic PEPs have been developed in order to improve transition from child-centered to adolescent health services. The aim of the study was to investigate the effects of a transition-oriented PEP on quality of life (QoL) and self-management in young patients with IBD (PEP naive), compared to patients with diabetes (familiar with PEPs). A 2-day transition workshop was oriented at improving psychosocial skills and addressed both generic as well as specific aspects of the condition. A controlled trial on the outcomes of a generic transition-oriented PEP was conducted in 14- to 20-year-old patients with IBD (n = 99) and diabetes (n = 153). Transition competence and QoL were assessed at baseline and 6-month follow-up. Results show that the intervention lead to a significant increase in QoL only in patients with IBD. The PEP significantly improved transition competence in both groups, however to a higher extent in subjects with IBD. CONCLUSION: Transition-oriented PEPs can have differential effects in different patient groups. However, this needs further longitudinal investigations. What is Known: • To date, evidence has accumulated concerning the effectiveness of patient education programs (PEPs) in pediatric health care for chronic conditions such as type 1 diabetes, asthma, atopic dermatitis, or obesity but is less documented in inflammatory bowel disease (IBD). In particular, PEPs in the transition period have not been investigated in youth with IBD. • The current study focuses on evaluating a PEP for transition preparation and management designed to be generically used across different chronic conditions since many aspects of managing chronic conditions share commonalities across conditions. The 2-day workshop included condition-specific modules adapted to the specific medical needs but was otherwise similar in quality and organization among different conditions. What is New: • The transition-oriented PEP was effective in enhancing self-management and transition management skills in both patients with IBD and diabetes; however, effects were higher in youth with IBD. A significant impact of the intervention on patients' QoL compared to the control group was only identified in youth with IBD. • We recommend that patients with IBD have access to PEP as a standard treatment as well as to a transition program during the course of illness.

Quality of health care in adolescents and adults with disorders/differences of sex development (DSD) in six European countries (dsd-LIFE).

BACKGROUND: To investigate the association between the structural quality of care and patient satisfaction with care in individuals with disorders/ differences of sex development (DSD). METHODS: A multicenter cross-sectional comparative study was conducted in 14 clinics in six European countries. We assessed the level of structural quality of care in each center using a self-constructed measure (Center Score) and the level of participant satisfaction with care using the customer satisfaction questionnaire (CSQ-4) and an adopted version of the Youth Health Care - Satisfaction, Utilization & Needs (YHC-SUN-SF). Data were obtained from individuals with Turner Syndrome (261), Klinefelter Syndrome (173), 46, XX congenital adrenal hyperplasia (190) and XY-DSD (257). RESULTS: We found large variations between the scores for structural quality of care both within a diagnostic group and within a country; the overall association between participant satisfaction with the center score was significant. CONCLUSIONS: Comparative effectiveness research across Europe can lead to more insight on beneficial structures and processes and the overall strategy to care for people with rare diseases in general and specific conditions such as disorders/ differences of sex development. Appreciation of higher levels of structural quality of the centers in this study supports the concept of comprehensive care. TRIAL REGISTRATION: German Clinical Trials Register: Registration identification number: DRKS00006072 , date of registration April 17th, 2014. DRKS00006072 (German Clinical Trials Register).

The Stigma of Mental Illness as a Barrier to Self Labeling as Having a Mental Illness.

The aim of this study was to investigate whether personal stigma decreases self-identification as having a mental illness in individuals with untreated mental health problems. We interviewed 207 persons with a currently untreated mental health problem as confirmed by a structured diagnostic interview. Measures included symptom appraisal, self-identification as having a mental illness (SELFI), self-labeling (open-ended question on the nature of their problem) stigma-related variables (explicit and implicit), as well as sociodemographics, current symptom severity, and previous treatment. Support for discrimination and implicit stigmatizing attitude were both associated with lower likelihood of self-identification. More social distance and support for discrimination were associated with less self-labeling. Previous treatment was the strongest predictor of symptom appraisal, SELFI, and self-labeling. Destigmatizing mental illness could increase awareness of personal mental health problems, potentially leading to lower rates of untreated mental illness.

Psychological, situational and application-related determinants of the intention to self-test: a factorial survey among students.

BACKGROUND: The Internet enables an unprecedented opportunity to access a broad range of self-tests (e.g. testing for HIV, cancer, hepatitis B/C), which can be conducted by lay consumers without the help of a health professional. However, there is only little knowledge about the determinants of the use of self-tests. Thus, the aims of this study were (1) to experimentally investigate the impact of situational and application-related characteristics on the intention to use a self-test (ST), compared to being tested by a health professional at home (HPH) or at a doctor's office (HPD), (2) to examine the applicability of social-cognitive health behaviour theories on self-testing, and (3) to explore the advantages of integrating technological affinity into social-cognitive health behaviour models to predict self-testing. METHODS: In a factorial survey, 1248 vignettes were rated by 208 students. The core concepts of social-cognitive health behaviour theories, technological affinity, and different situational and application-related characteristics were investigated. RESULTS: Intention to ST was only predicted by the medical expertise of the tested person, while HPH and HPD were also associated with the application purpose of the test and the presence of an emotionally supporting person. Perceived severity and outcome-expectancy significantly predicted intention to self-test. Technological enthusiastic people had a higher intention to use a self-test. CONCLUSIONS: Intention to ST, HPH and HPD were predicted by different situational and application-related characteristics. Social-cognitive health behaviour theories can be applied to predict self-testing and do not need to be extended by technological affinity.

The Youth Health Care measure-satisfaction, utilization, and needs (YHC-SUN)-development of a self-report version of the Child Health Care (CHC-SUN) proxy-measure.

BACKGROUND: The transition of health care of youth (age 15-25) with chronic conditions requires the assessment of adolescents' access, use and needs as well as satisfaction with the health services they use. The aim of this study was to test the adolescent adaptation of the parent version "Child Health Care Questionnaire - Satisfaction, Utilization and Needs" (CHC-SUN) concerning its psychometric performance and appropriateness for adolescents and young adults. METHODS: The Youth Health Care Measure (YHC-SUN) was designed to allow self-report of youth and it was pilot-tested in a small sample using cognitive debriefing. A cross-sectional survey in a sample of youth with chronic conditions in the transition period was carried out. RESULTS: One hundred eighty-two ambulatory care patients with three conditions participated in the survey. The subscales of the section on satisfaction with care showed excellent internal consistencies, uni-dimensionality and fit to the model of the parent version. There was no impact of gender and education on satisfaction with care. Associations with age, diagnosis, experiences with care and health literacy affecting the satisfaction with care indicate discriminatory and content validity. CONCLUSIONS: Potential applications of the new instrument are evaluations of health care services for adolescents and young adults using self-reports and evaluations of transition programs and interventions such as patient education.