A translation and preliminary validation of the Dutch Wound-QoL questionnaire

Background: Chronic wounds have a major impact on patients' health-related quality of life (HRQoL). Therefore, measuring HRQoL is an indispensable part of the treatment of patients with chronic wounds. The aim of this study was to translate and validate the Wound-QoL, a wound-specific HRQoL questionnaire, in a Dutch population. Methods: The Wound-QoL was translated into Dutch according to the international standards. Patients with chronic wounds were asked to complete questionnaires at baseline (T0) and after six weeks (T1), including Wound-QoL, EQ-5D-3L (a generic questionnaire to measure HRQoL) and a visual analogue scale (VAS) measuring wound pain. If patients were not able to complete the questionnaire by themselves, it was read out to them by a nurse. Further data were obtained from medical records. Results: Of the 120 patients included, 64 (53.3%) completed the questionnaire by themselves. To 55 patients (45.8%), the questionnaire was read out. The internal consistency of the Wound-QoL global score was high at both time points (T0: Cronbach's α = 0.89, T1: Cronbach's α = 0.92). The item selectivity for global score ranged from r = 0.25 to r = 0.77 at T0 and from r = 0.40 to r = 0.79 at T1. Overall, the self-completion and read-out subgroups showed similar internal consistency and item selectivity scores. With regard to convergent validity, significant correlations were found between Wound-QoL and EQ-5D-3L (T0: r = - 0.45, p < 0.001, T1: r = - 0.50, p < 0.001) as well as between Wound-QoL and pain VAS (T0: r = 0.23, p = 0.012, T1: r = 0.37, p = 0.001) at both time points. Responsiveness analyses showed significant correlations between changes in Wound-QoL and changes in EQ-5D-3L (r = - 0.37, p < 0.001), pain VAS (r = 0.24, p = 0.044) and wound size (r = 0.24, p = 0.013). The self-completion and read-out subgroups showed differences in convergent validity and responsiveness. Conclusions: The results indicate that the Dutch version of the Wound-QoL has positive psychometric properties. However, more research is needed to further explore the differences between self-completed and read-out questionnaires

How does a chronic wound change a patient's social life?:A European survey on social support and social participation

Chronic wounds can severely limit patient's social life. This cross-sectional study investigated quantitatively social support of patients with chronic wounds, its association with health-related quality of life as well as qualitatively changes in social participation of these patients. Overall, 263 patients from seven countries participated. The most frequent wound class was leg ulcer (49.2%). Results revealed generally high levels of social support (mean global score: 5.5) as measured with the Multidimensional Scale of Perceived Social Support. However, individuals differed considerably (range 1.0–7.0). All dimensions of social support differed by patients' family and living situations (p &lt; 0.001 to p = 0.040) and were positively correlated with generic health-related quality of life (r = 0.136–0.172). Having children, living with others and being in a relationship were significant predictors of having higher global social support. Patients reported great support from family members. Many participants reported no changes in relationships with friends. Wound care managers took an important role and provided additional emotional support. Patients reported a range of discontinued activities. Despite the high overall level of social support, inter-individual differences should be acknowledged. The importance of family carers should be acknowledged to be able to reduce caregiver burden and to ensure high-qualitative wound care.</p

How does a chronic wound change a patient's social life? A European survey on social support and social participation

Chronic wounds can severely limit patient's social life. This cross-sectional study investigated quantitatively social support of patients with chronic wounds, its association with health-related quality of life as well as qualitatively changes in social participation of these patients. Overall, 263 patients from seven countries participated. The most frequent wound class was leg ulcer (49.2%). Results revealed generally high levels of social support (mean global score: 5.5) as measured with the Multidimensional Scale of Perceived Social Support. However, individuals differed considerably (range 1.0–7.0). All dimensions of social support differed by patients' family and living situations (p &lt; 0.001 to p = 0.040) and were positively correlated with generic health-related quality of life (r = 0.136–0.172). Having children, living with others and being in a relationship were significant predictors of having higher global social support. Patients reported great support from family members. Many participants reported no changes in relationships with friends. Wound care managers took an important role and provided additional emotional support. Patients reported a range of discontinued activities. Despite the high overall level of social support, inter-individual differences should be acknowledged. The importance of family carers should be acknowledged to be able to reduce caregiver burden and to ensure high-qualitative wound care.</p

How do dermatologists’ personal models inform a patient–centred approach to management: a qualitative study using the example of prescribing a new treatment (Apremilast)

Background The quality of dermatology consultations is partly determined by how clinicians approach patient care. The term ‘Personal Models’ describes the explanatory frameworks of thoughts, feelings and experiences that drive behaviour. One study found that clinicians’ personal models, specifically their beliefs about autonomy and patient self-management, influenced the degree to which clinicians engage patients in shared decision-making during consultations. Further research is needed to further explore how clinicians’ personal models inform and affect the quality of patient care. Aims & objectives To explore how clinicians’ personal models inform shared decision-making and consultation style in managing people living with psoriasis in the context of a new treatment, Apremilast. Methods A Framework Analysis of qualitative semi-structured telephone interviews with 13 dermatologists from the UK and Germany who participated in a novel medicine trial for psoriasis called APPRECIATE. Results Two themes were derived from the data. Theme one, personal working models of patient care, comprised of two sub-themes: (1.1) patient-centeredness: a continuum; and (1.2) stereotypes and assumptions. Theme two, impact of personal working models on patient care, included three sub-themes: (2.1) shared decision-making: a continuum; (2.2) consultation skills; and (2.3) impact of concerns about Apremilast on prescribing behaviour. Conclusions Although many dermatologists endorsed a patient-centred approach, not all reported working in this way. Clinicians’ personal models, their beliefs, stereotypes, personal perceptions, and assumptions about patients, are likely to affect their prescribing behaviour and shared decision-making. Additional specialised training and education could increase patient-centeredness and whole person management

Validation of the Wound-QoL-17 and the Wound-QoL-14 in a European sample of 305 patients with chronic wounds

The Wound-QoL assesses the impact of chronic wounds on patients' health-related quality of life (HRQoL). A 17-item and a shortened 14-item version are available. The Wound-QoL-17 has been validated for multiple languages. For the Wound-QoL-14, psychometric properties beyond internal consistency were lacking. We aimed to validate both Wound-QoL versions for international samples representing a broad range of European countries, including countries for which validation data had yet been pending. Patients with chronic wounds of any aetiology or location were recruited in Austria, Lithuania, the Netherlands, Poland, Slovakia, Spain, Switzerland and Ukraine. Psychometric properties were determined for both Wound-QoL versions for the overall sample and, if feasible, country-wise. We included 305 patients (age 68.5 years; 52.8% males). Internal consistency was high in both Wound-QoL-17 (Cronbach's α: 0.820–0.933) and Wound-QoL-14 (0.779–0.925). Test–retest reliability was moderate to good (intraclass correlation coefficient: 0.618–0.808). For Wound-QoL-17 and Wound-QoL-14, convergent validity analyses showed highest correlations with global HRQoL rating (r = 0.765; r = 0.751) and DLQI total score (r = 0.684; r = 0.681). Regarding clinical data, correlations were largest with odour (r = −0.371; r = −0.388) and wound size (r = 0.381; r = 0.383). Country-wise results were similar. Both Wound-QoL versions are valid to assess HRQoL of patients with chronic wounds. Due to its psychometric properties and brevity, the Wound-QoL-14 might be preferrable in clinical practice where time is rare. The availability of various language versions allows for the use of this questionnaire in international studies and in clinical practice when foreign language patients are being treated.</p

Post-traumatic stress disorder and mental health assessment of seafarers working on ocean-going vessels during the COVID-19 pandemic

Background There are increasing concerns about mental health consequences of the COVID-19 pandemic among seafarers. This study aims to assess the effects of the current global health pandemic on life satisfaction and adverse psychological outcomes among seafarers. Methods In this cross-sectional study, 470 multinational seafarers working on board ships of two international shipping companies were assessed. Mental health outcomes were assessed by the general anxiety disorder (GAD-7) questionnaire, post-traumatic stress disorder (PTSD-8) questionnaire, and patient health questionnaire (PHQ-9) depressive severity score. Multivariate logistic regression was used to determine the association of demographic and work-related variables with mental health outcomes. Results Overall, 439 out of 470 invited seafarers with a mean age of 34.5 (SD: 8.05) years participated in this study (participation rate: 93.4%). The prevalence of anxiety, depressive, and post-traumatic stress symptoms was 12.4, 14.1, and 37.3%, respectively. In the multivariate model, the current vessel’s signing duration was directly associated with the odds of depressive and intrusion symptoms. Moreover, the duration of work per week was inversely associated with hyper-vigilance and avoidance. Also, non-officers, compared to officers, experienced significantly lower anxiety and depressive symptoms, hyper-vigilance, and avoidance. Conclusion The present study revealed a high prevalence of mental health problems among seafarers during the COVID-19 pandemic. We recommend that more evidence is generated regarding psychosocial health issues for this vulnerable occupation

Assessing the quality of life of people with chronic wounds by using the cross-culturally valid and revised Wound-QoL questionnaire

The Wound-QoL is an often used reliable and valid measure, originally developed in Germany. It has been sequentially translated and validated for other languages/countries, for the measurement of health-related quality of life (HRQoL) in patients with chronic wounds. However, a study from the United States postulated its benefits from further adaptations. Furthermore, some patients struggled to provide an answer for some of the items. We aimed to test the cross-cultural structure and psychometric performance of the questionnaire to suggest necessary revisions. This cross-sectional analysis of existing data sets included 1185 patients from Germany, the US, the Netherlands, Spain, Sweden, and Israel. Patients in the U.S. Wound Registry completed the Wound-QoL during routine care. Different studies comprised the data collection in the other countries. Almost half of the patients were women (48.4%). Furthermore, 42.6% were diagnosed with leg ulcers. Their average age was 66 years. We used a confirmatory factor analysis and an unconstrained graded response model. We revised and shortened the Wound-QoL from 17 to 14 items. In addition, we supported the cross-cultural metric invariance of the revised Wound-QoL questionnaire. The new version with 14 items and three dimensions revealed good psychometric properties with Cronbach's alpha (α) of 0.913 for the total score, and 0.709–0.907 for different dimensions. Furthermore, we provided strict invariance for different clinical variables. In conclusion, the revised Wound-QoL is a reliable and cross-cultural instrument to measure the HRQoL on patients with chronic wounds. Future studies should analyse the revised Wound-QoL for convergent validity with generic HRQoL questionnaires as well as for determining its sensitivity to clinical change

The Science Performance of JWST as Characterized in Commissioning

This paper characterizes the actual science performance of the James Webb Space Telescope (JWST), as determined from the six month commissioning period. We summarize the performance of the spacecraft, telescope, science instruments, and ground system, with an emphasis on differences from pre-launch expectations. Commissioning has made clear that JWST is fully capable of achieving the discoveries for which it was built. Moreover, almost across the board, the science performance of JWST is better than expected; in most cases, JWST will go deeper faster than expected. The telescope and instrument suite have demonstrated the sensitivity, stability, image quality, and spectral range that are necessary to transform our understanding of the cosmos through observations spanning from near-earth asteroids to the most distant galaxies.Comment: 5th version as accepted to PASP; 31 pages, 18 figures; https://iopscience.iop.org/article/10.1088/1538-3873/acb29

Entwicklungspolitisches bürgerschaftliches Engagement: ein Beitrag zur Schärfung der Definition

Das vorliegende Discussion Paper leistet einen Beitrag zur Schärfung der Definition des entwicklungspolitischen Engagements. Es hat den Anspruch, die Diskussion über eine Definition entwicklungspolitischen bürgerschaftlichen Engagements zu eröffnen. Bislang fehlt es an einer speziell auf diesen Bereich ausgerichteten begrifflichen Abgrenzung. Ausgangspunkt der Betrachtung sind vorhandene Definitionen zur Entwicklungspolitik und zum bürgerschaftlichen Engagement. Außerdem werden exemplarische Themenfelder von entwicklungspolitischem Engagement und in der Praxis vorhandene Engagementformen berücksichtigt. Auf dieser Grundlage wird folgender Definitionsvorschlag entwickelt: Entwicklungspolitisches bürgerschaftliches Engagement ist individuelles Handeln, das sich explizit oder implizit am Leitbild der nachhaltigen Entwicklung orientiert und sich für eine Verbesserung der Situation von Menschen in Entwicklungsländern einsetzt. Als Entwicklungsländer werden hier diejenigen Länder bezeichnet, die in der OECD-DAC-Liste aufgelistet sind, d.h. im engeren Sinne sind auch Schwellenländer mit berücksichtigt. ... (Autorenreferat)The aim of this discussion paper is to contribute to a definition of citizen engagement in the field of development cooperation. A specific definition of this concept has hitherto been lacking. This discussion paper aims at opening the discussion about what citizen engagement in the field of development cooperation is, means and comprises. The starting point for this consideration is represented by the existing definitions of development cooperation and active citizenship, as well as the issues of engagement in the field of development cooperation and the forms of engagement encountered in practice. The following definition is being proposed: Citizen engagement in the field of development cooperation is individual behaviour that explicitly or implicitly supports the concept of sustainable development and seeks to improve the living conditions of people in developing countries, i.e. countries that receive Official Development Assistance (ODA). Citizen engagement in the field of development cooperation is voluntary in nature and is not intended to achieve personal gain. The focus on the community does not preclude individual benefits in the form of the acquisition of knowledge and competence, the forging and cultivation of social relationships or other non-material advantages. Citizen engagement is mostly carried out in the public domain. Active citizenship in the field of development cooperation may manifest itself either at home or abroad and either within or outside organizations. It reflects the donation of time, money and goods. ... (author's abstract