Kathrin I. Fischer

Social anxiety disorder (SAD) affects up to 1 in 8 individuals over their lifetime and is characterized by an intense fear of social situations where there may be exposure to unfamiliar people or possible scrutiny. The analysis of social media data rather than traditional methods (interviews or focus groups) can provide a unique opportunity to understand the lived experience of individuals with SAD, for whom interacting with strangers is challenging. This retrospective observational study reviewed published literature from PubMed and data from Reddit using social media listening (SML). A stepwise analysis in line with US Food and Drug Administration Patient-Focused Drug Development guidelines was performed to develop a conceptual model for SAD. Natural language processing techniques and machine learning approaches were employed to extract symptoms and impacts described by individuals with SAD. Eleven publications from the literature and 535,544 posts from 118,040 Reddit users were included. Clinical and patient experts then refined the conceptual model covering three key symptom domains (physical, negative automatic thoughts, and emotions) and two impact domains (social functioning and occupational/educational functioning). This study provides insights into the lived experience of individuals with SAD and confirms the value of SML when traditional methods are inappropriate.

Key Points: Health-related quality of life in dialysis depends on many nonclinical factors. Psychosocial determinants contribute to explaining variance in health-related quality-of-life domains better than demographic and medical variables alone. In comparison with past small-scale studies, self-efficacy showed significant associations with all aspects of health-related quality of life. Background: We investigated whether psychosocial determinants self-efficacy and social support are associated with health-related quality of life in patients on hemodialysis enrolled in the CONVINCE trial. Methods: We used baseline data from the cohort of patients involved in the CONVINCE randomized trial of hemodiafiltration versus hemodialysis. Measures included age, sex, relationship status, children, housing, education, employment, comorbidities, dialysis schedules, time of first dialysis, residual kidney function, general self-efficacy and social support scores, and Patient-Reported Outcomes Measurement Information System measurements for health-related quality of life. Associations were analyzed using hierarchical regression. Results: One thousand three hundred sixty patients from the CONVINCE trial were the cohort of interest. The mean age was 62±13.5 years (range, 20–92), and 66.9% were male. Self-efficacy was a significant predictor for all health-related quality-of-life domains: depression (β=−0.36, P < 0.001), anxiety (β=−0.35, P < 0.001), social participation (β=0.32, P < 0.001), cognition (β=0.29, P < 0.001), fatigue (β=−0.29, P < 0.001), physical function (β=0.27, P < 0.001), sleep disturbance (β=−0.23, P < 0.001), pain interference (β=0.21, P < 0.001), pain intensity (β=−0.17, P < 0.001), interdialytic symptoms (β=−0.14, P = 0.002), and intradialytic symptoms (β=−0.14, P = 0.002). Social support was a significant predictor for cognition (β=0.21, P < 0.001), sleep disturbance (β=−0.11, P = 0.017), and intradialytic symptoms (β=−0.11, P = 0.02). Conclusions: Higher general self-efficacy scale scores are associated with improvements in cognition, depression, anxiety, social participation, fatigue, physical function, sleep disturbance, pain interference, interdialytic symptoms, pain intensity, and intradialytic symptoms. Associations for self-efficacy are larger than those for social support and stronger than previously reported. It is plausible that targeted psychosocial interventions may improve health outcomes in people on hemodialysis. Podcast: This article contains a podcast at https://dts.podtrac.com/redirect.mp3/www.asn-online.org/media/podcast/K360/2025_01_30_KID0000000599.mp3

Background: Technical innovation to assess patient-reported outcomes (PROs) facilitates their implementation in clinical practice. In particular, mobile applications (apps) allow PROs to be assessed outside of the clinical setting. A patient’s health status can be remotely monitored and evaluated after discharge, and their recovery process tracked. This is of particular interest for patients after knee arthroplasty, as the recovery phase after surgery usually takes place in an outpatient setting and requires a high level of patient engagement. Providing results of PRO assessments to patients in the form of a feedback report could increase patient engagement and may improve communication between health care professionals and patients. The aim of the study is to develop a PRO feedback report for mobile devices that is comprehensible and provides valuable information for patients after knee arthroplasty. Results: In an iterative development process, our expert group developed two preliminary feedback reports (a text-based version and a graphical display) based on previous research results and practical experience. In a second step, we discussed these reports with orthopedic patients (n = 8) in terms of comprehensibility and value using semi-structured interviews and cognitive debriefing methods. Participants assessed the reports as informative, but had some difficulties in fully comprehending all of the information provided. Based on the feedback from patients, we modified both versions and reduced complexity to increase comprehensibility. Conclusions: A PRO feedback report for patients for mobile app use has to take account of the heterogeneous user group, particularly demographics such as age and experience with mobile devices. Information should be presented in a simple way to be comprehensible and of value to patients. Technological advancements allow a simple default report to be set, something which enables patients interested in additional information to make customizations.

Introduction: To achieve optimized blood glucose concentrations (assessed by HbA1c) and high health-related quality of life (HRQL), children and adolescents with diabetes mellitus type 1 (T1DM) must follow strict disease management strategies. This study aims to investigate HRQL of children and adolescents with T1DM and its association with HbA1c values over the course of 6 months. Methods: Patients aged 7–17 years (n = 203) with T1DM provided HRQL data on a monthly basis. HRQL was measured using the Kids-CAT, a computer-adaptive test (CAT) comprising five generic HRQL domains. HbA1c concentrations were assessed at baseline, at 3 and 6 months. We explored the trajectory of HRQL at the domain level using linear mixed effects models. Further, we investigated the association between HRQL and HbA1c concentrations over time using path analysis models. Results: Children and adolescents with T1DM reported high scores across all HRQL domains over time. However, those with an HbA1c concentrations of >9.0% reported significantly lower scores in physical well-being and parent relations compared with those with an HbA1c concentration of 9.0% reported lower scores in selected HRQL domains. Thus, special attention should be drawn to HRQL of children and adolescents with higher HbA1c concentrations. The minimal relationship between HbA1c and HRQL indicates that the two therapy goals, i.e., achievement and maintenance of glycemic targets and high HRQL, should be considered and evaluated independently in clinical routine. Trial Registration: DRKS00006326 (German Clinical Trial Register), date of registration: August 1st, 2014.

Introduction: The improvement—or at least maintenance—of health-related quality of life (HRQoL) in children and adolescents is one of the main aims of chronic disease care. This study examines HRQoL of children and adolescents with three different chronic conditions (i.e., diabetes mellitus, asthma, juvenile arthritis) using the computer-adaptive test Kids-CAT, comprising five HRQoL domains: physical well-being, psychological well-being, parent relations, social support and peers, and school well-being. Further, associations between HRQoL and distinct clinical data and medical assessments are investigated to explore how much variability of the five domains can be explained by these variables. Methods: Cross-sectional data of the Kids-CAT study was analyzed. The Kids-CAT was used in two outpatient clinics in northern Germany gathering data on self-reported HRQoL in n = 309 children and adolescents aged 7–17 years. Additionally, general patient information, clinical data, and pediatrician-reported medical assessments were measured. Multiple regression analyses were conducted to explore associations between HRQoL and selected variables (i.e., disease duration, co-morbidity, disease control, overall health status). Results: Overall, self-reported HRQoL in all five domains were comparable to data of an age- and sex-matched reference population. Results of regression analyses indicated that the investigated variables only minimally explain variance in the five Kids-CAT domains. Sociodemographic, clinical data, and medical assessments explained 18.4% of the variance in physical well-being, 10.7% in psychological well-being, and < 10% of the variance in parent relations, social support and peers, and school well-being. Conclusion: Sociodemographic data, disease duration, co-morbidity, and medical assessments, such as disease control or pediatrician-assessed overall health status show low association with HRQoL of children and adolescents with chronic conditions. Data on self-reported HRQoL delivers valuable information on children's well-being and can improve healthcare professionals' understanding of the subjective well-being of their young patients. The implementation of tools like the Kids-CAT can facilitate the identification of potential problem areas, which should enable healthcare professionals to better address specific healthcare needs. Clinical Trial Registration: identifier: DRKS00006326 (retrospectively registered); Date of registry: August 1st, 2014.

Gesundheitsbezogene Lebensqualität gewinnt als Zielparameter für verschiedene Akteure des Gesundheitswesens an Bedeutung, z. B. bei der Therapieevaluation von chronisch kranken Patienten. In diesem Artikel beschreiben wir die unterschiedlichen Ebenen der „gesundheitsbezogenen Lebensqualität“, aktuelle Methoden zur Erfassung patientenberichteter Gesundheitsmerkmale sowie moderne testtheoretische Ansätze und deren Anwendungsmöglichkeiten. Health-related quality of life (HRQoL) acquires increased importance as a target parameter for different stakeholders in healthcare, e. g. to assess treatment outcome in chronically ill patients. In this educational article, we explain the levels of the health-related quality of life construct and associated main dimensions including physical, mental and social health. State-of-the-art approaches for assessment of patient-reported outcomes (PROs) are introduced on the basis of the HRQoL model. Furthermore, modern test-theoretical approaches and their applications are presented, which are aimed at standardizing and improving the assessment of PROs (e. g., computer-adaptive testing). Finally, we present 2 major international PRO initiatives (PROMIS^® and EORTC Quality of Life Group) that have been influential in advancing the assessment of patient outcomes over the last few years.

Recently, we developed a computer-adaptive test (CAT) for assessing health-related quality of life (HRQoL) in children and adolescents: the Kids-CAT. It measures five generic HRQoL dimensions. The aims of this article were (1) to present the study design and (2) to investigate its psychometric properties in a clinical setting.

To describe the implementation process of a computer-adaptive test (CAT) for measuring health-related quality of life (HRQoL) of children and adolescents in two pediatric clinics in Germany. The study focuses on the feasibility and user experience with the Kids-CAT, particularly the patients’ experience with the tool and the pediatricians’ experience with the Kids-CAT Report. The Kids-CAT was completed by 312 children and adolescents with asthma, diabetes or rheumatoid arthritis. The test was applied during four clinical visits over a 1-year period. A feedback report with the test results was made available to the pediatricians. To assess both feasibility and acceptability, a multimethod research design was used. To assess the patients’ experience with the tool, the children and adolescents completed a questionnaire. To assess the clinicians’ experience, two focus groups were conducted with eight pediatricians. The children and adolescents indicated that the Kids-CAT was easy to complete. All pediatricians reported that the Kids-CAT was straightforward and easy to understand and integrate into clinical practice; they also expressed that routine implementation of the tool would be desirable and that the report was a valuable source of information, facilitating the assessment of self-reported HRQoL of their patients. The Kids-CAT was considered an efficient and valuable tool for assessing HRQoL in children and adolescents. The Kids-CAT Report promises to be a useful adjunct to standard clinical care with the potential to improve patient–physician communication, enabling pediatricians to evaluate and monitor their young patients’ self-reported HRQoL.