TY - JOUR AB - Purpose: The Pulmonary Embolism Quality of Life (PEmb-QoL) questionnaire is the only existing disease-specific instrument for measuring quality of life after pulmonary embolism (PE). It includes six dimensions: frequency of complaints, limitations in activities of daily living, work-related problems, social limitations, intensity of complaints and emotional complaints. The present study aimed to determine the psychometric properties including responsiveness and structural validity of the German version. Methods: The analysis used data from participants of the LEA cohort study at University Hospital Augsburg. The PEmb-QoL was administered via postal surveys 3, 6 and 12 months post-PE. Internal consistency and test–retest reliability were evaluated by calculating Cronbach’s alpha and intra-class correlation coefficients (ICC). Standardized response means (SRM) were calculated for investigating responsiveness. For evaluating the fit of the factor structure, confirmatory factor analysis (CFA) was conducted. Results: Overall, we used data from 299 patients 3 months after PE. Cronbach’s alpha (0.87–0.97) and ICC (0.53–0.90) were in an acceptable to good range. SRM scores showed good responsiveness of all dimensions. CFA revealed the four-factor model including one general factor to have a good model fit. Conclusion: Despite existing floor effect, most standard criteria of reliability and validity were met and indications for appropriateness of the PEmb-QoL summary score could be found. Apart from some restrictions concerning the factor structure and the dimension of social limitations, our results support the use of the PEmb-QoL questionnaire for evaluating PE-specific quality of life. Future studies should seek replication in different samples to ensure generalizability of the findings. AU - Fischer, S.* AU - Meisinger, C. AU - Linseisen, J. AU - von Scheidt, W.* AU - Berghaus, T.M.* AU - Kirchberger, I. C1 - 64604 C2 - 52340 SP - 2235-2245 TI - The German version of the Pulmonary Embolism Quality of Life (PEmb-QoL) questionnaire: Reliability, responsiveness and structural validity. JO - Qual. Life Res. VL - 31 IS - 7 PY - 2022 SN - 0962-9343 ER - TY - JOUR AB - PURPOSE: This study aimed to investigate inequality and heterogeneity in health-related quality of life (HRQoL) and to provide EQ-5D-5L population reference data for Sweden. METHODS: Based on a large Swedish population-based survey, 25,867 respondents aged 30‒104 years, HRQoL is described by sex, age, education, income, economic activity, health-related behaviours, self-reported diseases and conditions. Results are presented by EQ-5D-5L dimensions, respondents rating of their overall health on the EQ visual analogue scale (EQ VAS), VAS index value and TTO (time trade-off) index value allowing for calculation of quality-adjusted life years (QALYs). Ordinary Least Squares and multivariable logistic regression analyses were used to study inequalities in observed EQ VAS score between socioeconomic groups and the likelihood to report problems on the dimensions, respectively, adjusted for confounders. RESULTS: In total, 896 different health states were reported; 24.1% did not report any problems. Most problems were reported with pain/discomfort. Women reported worse HRQoL than men, and health deteriorated with age. The strongest association between diseases and conditions and EQ VAS score was seen for depression and mental health problems. There was a socioeconomic gradient in HRQoL; adjusting for health-related behaviours, diseases and conditions slightly reduced the differences between educational groups and income groups, but socioeconomic inequalities largely remained. CONCLUSION: EQ-5D-5L population reference (norms) data are now available for Sweden, including socioeconomic differentials. Results may be used for comparisons with disease-specific populations and in health economic evaluations. The observed socioeconomic inequality in HRQoL should be of great importance for policy makers concerned with equity aspects. AU - Teni, F.S.* AU - Gerdtham, U.G.* AU - Leidl, R. AU - Henriksson, M.* AU - Åström, M.* AU - Sun, S.* AU - Burström, K.* C1 - 63290 C2 - 51458 CY - Van Godewijckstraat 30, 3311 Gz Dordrecht, Netherlands TI - Inequality and heterogeneity in health-related quality of life: Findings based on a large sample of cross-sectional EQ-5D-5L data from the Swedish general population. JO - Qual. Life Res. PB - Springer PY - 2021 SN - 0962-9343 ER - TY - JOUR AB - Purpose Resilience may facilitate the adaptation after experiencing a severe disease such as acute myocardial infarction (AMI) and attenuate the negative effects of stress on health-related quality of life (HRQOL). However, it is unclear so far whether resilience moderates a negative association between work-related stress and HRQOL in employed patients after AMI. Methods Patients with confirmed AMI and regular paid employment admitted to a hospital in the study region of the MONICA/KORA Myocardial Infarction Registry, Germany (04/2014-06/2017) were included and completed questionnaires during their hospital stay and 6 and 12 months after discharge. The Resilience Questionnaire (RS-11) and the Effort-Reward Imbalance (ERI) Questionnaire were used to assess trait resilience and ERI, respectively. HRQOL was measured by the Short Form 36 Health Survey (SF-36) mental and physical component summary scales. Generalized estimating equations (GEE) adjusted for relevant potential confounding variables (demographic, social, stress-related, and clinical) were used to determine the association between resilience and HRQOL in the study course. Results From the 346 patients enrolled in the study, 270 patients (78.0%) had completed all surveys. High baseline trait resilience was significantly and independently associated with high physical HRQOL (ss = 0.15, p < 0.0001) and high mental HRQOL (ss = 0.37, p < 0.0001) 1 year post AMI. No significant interaction effects between trait resilience and ERI were found in the physical HRQOL GEE model (ss = 0.05, p = 0.7241) and in the mental HRQOL model (ss = 0.05, p = 0.3478). Conclusions The results demonstrated that trait resilience is independently and strongly related with post-AMI HRQOL but does not moderate the association between ERI and HRQOL. AU - Kirchberger, I.* AU - Burkhardt, K.* AU - Heier, M. AU - Thilo, C.* AU - Meisinger, C.* C1 - 56946 C2 - 47377 CY - Van Godewijckstraat 30, 3311 Gz Dordrecht, Netherlands SP - 391-401 TI - Resilience is strongly associated with health-related quality of life but does not buffer work-related stress in employed persons 1 year after acute myocardial infarction. JO - Qual. Life Res. VL - 29 IS - 2 PB - Springer PY - 2020 SN - 0962-9343 ER - TY - JOUR AB - PurposeTo analyse the association of area-level deprivation (German Index of Multiple Deprivation, GIMD 2010) with health- and disease-related quality of life (QoL) and glycaemic control (HbA1c) jointly with individual-level socioeconomic status (SES) in young patients with preschool-onset type 1 diabetes.MethodsA total of 425 male and 414 female patients aged 11-21years from a Germany-wide population-based survey completed the generic KINDL-R, the DISABKIDS chronic-generic module (DCGM-12), and the DISABKIDS diabetes-specific module with impact and treatment scales (QoL indicators; range 0-100 with higher scores representing better QoL). To analyse the association of area-level deprivation and SES with QoL and HbA1c, multiple linear regression models were applied adjusting for sociodemographic and health-related variables.ResultsMean QoL scores (SD) were 73.2 (12.2) for the KINDL-R, 76.1 (16.1) for the DCGM-12, 66.2 (19.9) for diabetes impact, and 56.4 (27.3) for diabetes treatment (DISABKIDS). Mean HbA1c was 8.3 (1.4)%. While both QoL outcomes and HbA1c level improved with increasing individual SES, no association was observed between area-level deprivation (GIMD 2010) and either outcome.ConclusionsCompared with individual SES, area-level deprivation seems to be of minor importance for QoL and glycaemic control in young people with early-onset type 1 diabetes. AU - Bächle, C.* AU - Peneva, A.* AU - Maier, W. AU - Castillo, K.* AU - Stahl-Pehe, A.* AU - Kuß, O.* AU - Holle, R. AU - Hermann, J.M.* AU - Holl, R.W.* AU - Rosenbauer, J.* C1 - 54187 C2 - 45434 CY - Van Godewijckstraat 30, 3311 Gz Dordrecht, Netherlands SP - 3131-3136 TI - Association of individual and area-level socioeconomic conditions with quality of life and glycaemic control in 11-to 21-year-old adolescents with early-onset type 1 diabetes: A cross-sectional study. JO - Qual. Life Res. VL - 27 IS - 12 PB - Springer PY - 2018 SN - 0962-9343 ER - TY - JOUR AB - Among patients with lung disease, decreased lung function is associated with lower health-related quality of life. However, whether this association is detectable within the physiological variability of respiratory function in lung-healthy populations is unknown. We analyzed the association of each EQ-5D-3L dimension (mobility, self-care, usual activities, pain/discomfort, anxiety/depression) and self-reported physical inactivity with spirometric indices in lung-healthy adults. Modulating effects between inactivity and EQ-5D dimensions were considered. 1132 non-smoking, apparently lung-healthy participants (48% male, aged 64 +/- 12 years) from the population-based KORA F4L and Age surveys in Southern Germany were analyzed. Associations of each EQ-5D dimension and inactivity with spirometric indices serving as outcomes (forced expiratory volume in 1 s (FEV1), forced vital capacity (FVC), FEV1/FVC, and mid-expiratory flow) were examined by linear regression, considering possible confounders. Interactions between EQ-5D dimensions (no problems/any problems) and inactivity (four categories of time spent engaging in exercise: inactive to most active) were assessed. Among all participants 42% reported no problems in any EQ-5D dimension, 24% were inactive and 32% exercised > 2 h/week. After adjustment, FEV1 was - 99 ml (95% CI - 166; - 32) and FVC was - 109 ml (95% CI - 195; - 24) lower among subjects with mobility problems. Comparable estimates were observed for usual activities. Inactivity was negatively associated with FVC (beta-coefficient: - 83 ml, 95% CI - 166; 0), but showed no interactions with EQ-5D. Problems with mobility or usual activities, and inactivity were associated with slightly lower spirometric parameters in lung-healthy adults, suggesting a relationship between perceived physical functioning and volumetric lung function. AU - Luzak, A. AU - Karrasch, S. AU - Wacker, M. AU - Thorand, B. AU - Nowak, D.* AU - Peters, A. AU - Schulz, H. C1 - 52910 C2 - 44404 CY - Dordrecht SP - 735-745 TI - Association of generic health-related quality of life (EQ-5D dimensions) and inactivity with lung function in lung-healthy German adults: Results from the KORA studies F4L and Age. JO - Qual. Life Res. VL - 27 IS - 3 PB - Springer PY - 2018 SN - 0962-9343 ER - TY - JOUR AB - PURPOSE: Community and neighbourhood structures contribute not only to the health and well-being, but also to the participation of older adults. The degree of participation depends on both the living environment and the individual's personal characteristics, preferences and perception. However, there is still limited empirical evidence on how community and neighbourhood structures are linked to participation and health in the aged population. METHODS: A qualitative exploratory approach was chosen with a series of problem-centred, semi-structured focus group discussions. Study participants were selected from within the city of Augsburg, Southern Germany, and from two municipalities in surrounding rural districts. The interviews took place in 2013. Structuring content analysis was used to identify key concepts. RESULTS: We conducted 11 focus group discussions with a total of 78 different study participants. The study participants (33 men and 45 women) had a mean age of 74 years (range 65-92 years). Only two study participants lived in an assisted living facility. Of all study participants, 77 % lived in urban and 23 % in rural areas. We extracted four metacodes ('Usual activities', 'Requirements for participation', 'Barriers to participation' and 'Facilitators for participation') and 15 subcodes. Health and poorly designed infrastructure were mentioned as important barriers to participation, and friendship and neighbourhood cohesion as important facilitators. CONCLUSIONS: This qualitative study revealed that poor design and accessibility of municipal infrastructure are major barriers to participation in old age in Germany. Community and neighbourhood structures can be part of the problem but also part of the solution when accessibility and social networks are taken into account. AU - Strobl, R.* AU - Maier, W. AU - Ludyga, A.* AU - Mielck, A. AU - Grill, E.* C1 - 45380 C2 - 37311 SP - 143-152 TI - Relevance of community structures and neighbourhood characteristics for participation of older adults: A qualitative study. JO - Qual. Life Res. VL - 25 IS - 1 PY - 2015 SN - 0962-9343 ER - TY - JOUR AB - PURPOSE: We compare pre- and post-operative health-related quality of life (HRQoL) and length of stay after total hip replacement (THR) in matched German and English patient cohorts to test for differences in admission thresholds, clinical effectiveness and resource utilisation between the healthcare systems. METHODS: German data (n = 271) were collected in a large orthopaedic hospital in Munich, Germany; English data (n = 26,254) were collected as part of the national patient-reported outcome measures programme. HRQoL was measured using the EuroQoL-5D instrument. Propensity score matching was used to construct two patient cohorts that are comparable in terms of preoperative patient characteristics. RESULTS: Before matching, patients in England showed lower preoperative EQ-5D scores (0.35 vs 0.52, p < 0.001) and experienced a larger improvement in HRQoL (0.43 vs 0.33, p < 0.001) than German patients. Patients in the German cohort were more likely to report no or only moderate problems with mobility and pain preoperatively than their English counterparts. After matching, improvements in HRQoL were comparable (0.32 vs 0.33, p = 0.638); post-operative scores were slightly higher in the German cohort (0.82 vs 0.85, p = 0.585). Length of stay was substantially lower in England than in Germany (4.5 vs 9.0 days, p < 0.001). CONCLUSIONS: Our results highlight differences in preoperative health status between countries, which may arise due to different admission thresholds and access to surgery. In terms of quality of life, THR surgery is equally effective in both countries when performed on similar patients, but hospital stay is shorter in England. AU - Vogl, M. AU - Leidl, R. AU - Plötz, W.* AU - Gutacker, N.* C1 - 31937 C2 - 34887 CY - Dordrecht SP - 513-520 TI - Comparison of pre- and post-operative health-related quality of life and length of stay after primary total hip replacement in matched English and German patient cohorts. JO - Qual. Life Res. VL - 24 IS - 2 PB - Springer PY - 2015 SN - 0962-9343 ER - TY - JOUR AB - PURPOSE: The aim of this study was to examine how transition between normal glucose tolerance, prediabetes and diabetes over a 7 year period is associated with change in health-related quality of life (HRQL) in an elder German population-based cohort. METHODS: We used data from 1,046 participants of the KORA S4/F4 cohort study aged 55-74 years at baseline. Based on an oral glucose tolerance test, prediabetes was defined as impaired fasting glucose and/or impaired glucose tolerance. HRQL was assessed with the SF-12 questionnaire. Using linear regression, we estimated mean change in HRQL over time, depending on glucose status at baseline and follow-up, adjusted by demographic and lifestyle variables. RESULTS: Individuals progressing to prediabetes or diabetes experienced a greater loss in the physical component score than patients with persistent normal glucose tolerance (-2.31 and -7.44 vs. -1.08), but the difference was only significant for subjects converting to diabetes. Subjects with prediabetes at baseline and diabetes at follow-up had a significant loss in mental health compared to subjects with persistent prediabetes. CONCLUSIONS: There is first evidence that worsening of glucose metabolism over time is associated with deteriorating HRQL, however, further and larger longitudinal studies are needed to confirm these findings. AU - Hunger, M. AU - Holle, R. AU - Meisinger, C. AU - Rathmann, W.* AU - Peters, A. AU - Schunk, M. C1 - 31065 C2 - 33222 CY - Dordrecht SP - 2515-2520 TI - Longitudinal changes in health-related quality of life in normal glucose tolerance, prediabetes and type 2 diabetes: Results from the KORA S4/F4 cohort study. JO - Qual. Life Res. VL - 23 IS - 9 PB - Springer PY - 2014 SN - 0962-9343 ER - TY - JOUR AB - The impact of vertigo and dizziness on healthy ageing, and especially on participation, is not fully understood. The objective of this study was to investigate the association of vertigo and dizziness with self-perceived participation and autonomy in older non-institutionalised individuals, adjusted for the presence of other health conditions. Specifically, we wanted to investigate the different effects of vertigo and dizziness on specific components of participation, i.e. restrictions in indoor and outdoor autonomy, family role, social life and relationships, and work and education. Data originate from the second wave of the German KORA-Age cohort study collected in 2012. Participation and autonomy was investigated with the Impact on Participation and Autonomy Questionnaire. We used robust regression to analyse the association of vertigo and dizziness with self-perceived participation and autonomy adjusted for covariates. A total of 822 participants (49.6 % female) had a mean age of 78.1 years (SD 6.39). Participation and autonomy were significantly lower in participants with vertigo and dizziness across all domains. Adjusted for age, sex, and chronic conditions, vertigo and dizziness were significantly associated with participation restrictions in all domains except social life and relationships. The results of our study indicate that vertigo and dizziness contribute to restrictions in participation and autonomy in individuals of older age. Recognising vertigo and dizziness as independent contributors to loss of autonomy and decreased chances for independent living may create new options for patient care and population health, such as the designing of complex interventions to maintain participation and autonomy. AU - Mueller, M.* AU - Strobl, R.* AU - Jahn, K.* AU - Linkohr, B. AU - Ladwig, K.-H. AU - Mielck, A. AU - Grill, E.* C1 - 32524 C2 - 35124 CY - Dordrecht SP - 2301-2308 TI - Impact of vertigo and dizziness on self-perceived participation and autonomy in older adults: Results from the KORA-Age study. JO - Qual. Life Res. VL - 23 IS - 8 PB - Springer PY - 2014 SN - 0962-9343 ER - TY - JOUR AB - PURPOSE: To analyse the psychometric properties of the EQ-5D in German stroke survivors undergoing neurological rehabilitation. METHODS: The EQ-5D, the Hospital Anxiety and Depression Scale (HADS) and the Stroke Impact Scale (SIS) were completed before (210 subjects) and after (183 subjects) a patient education programme in seven rehabilitation clinics in Bavaria, Germany. A postal follow-up was conducted after 6 months. Acceptance, validity, reliability and responsiveness of the EQ-5D were tested. The SIS subscales were used as external anchors to classify the patients into change groups between the measurements. RESULTS: The proportion of missing answers ranged from 4.7 to 8.6%. Between 16 and 19% reported no problems in any EQ-5D dimension. At baseline, correlations between EQ-5D index and the SIS subscales ranged from 0.15 (communication) to 0.60 (mobility). Correlations with the EQ VAS were slightly smaller. All scores were reliable in test-retest with intraclass correlations ranging from 0.67 to 0.81. EQ-5D index and EQ VAS were consistently responsive only to improvements in health, showing small- to medium effect sizes (0.27-0.42). CONCLUSIONS: The EQ-5D has shown reasonable validity, reliability and, more limited, responsiveness in stroke patients with mild to moderate limitations of functional status, allowing it to be used in clinical trials in rehabilitation. AU - Hunger, M. AU - Sabariego, C.* AU - Stollenwerk, B. AU - Cieza, A.* AU - Leidl, R. C1 - 6871 C2 - 29374 SP - 1205-1216 TI - Validity, reliability and responsiveness of the EQ-5D in German stroke patients undergoing rehabilitation. JO - Qual. Life Res. VL - 21 IS - 7 PB - Springer PY - 2012 SN - 0962-9343 ER - TY - JOUR AB - PURPOSE: Due to their cognitive impairment, the health-related quality of life (HRQoL) of patients with dementia is often rated by proxies. This study aims to analyse the psychometric properties of the EQ-5D applied to patients with mild to moderate dementia and their family caregivers. METHODS: Three hundred and ninety patients and their caregivers were asked to assess the patients' HRQoL using the EQ-5D. The German population-based time trade-off values were used to calculate utility weights. Acceptance, discriminative ability, construct validity, inter-rater agreement and responsiveness were tested. Factors that could have an impact on inter-rater agreement were analysed using a multivariate regression. RESULTS: Five per cent of patients did not fill out the EQ-5D. The response rate of caregivers and of patients with mild dementia was higher than that of patients with moderate dementia. There were no floor or ceiling effects. The test results of the caregivers concerning construct validity and responsiveness were better than those of the patients. The inter-rater reliability was not satisfactory either on the dimension level or on the utility score level. Caregivers gave the patients' HRQoL significantly lower ratings than did the patients themselves. Better abilities of the patient to perform activities of daily living and a lower subjective burden of the caregiver were associated with a higher inter-rater agreement. CONCLUSIONS: The study showed that the EQ-5D is especially applicable to patients with mild dementia and their caregivers as proxies. However, there are important differences between patient and proxy ratings, even in cases of mild dementia, at the dimension level as well as utility score level, which should be considered in the interpretation of quality of life scores AU - Kunz, S. C1 - 1256 C2 - 27320 SP - 425-434 TI - Psychometric properties of the EQ-5D in a study of people with mild to moderate dementia. JO - Qual. Life Res. VL - 19 IS - 3 PB - Springer PY - 2010 SN - 0962-9343 ER - TY - JOUR AU - Engelbrecht, R. AU - Demski, H. AU - Hildebrand, C. AU - Zahlmann, G. C1 - 3981 C2 - 23258 SP - 243-247 TI - From health telematics to telehealth - experiences from projects. JO - Qual. Life Res. VL - 3 PY - 2005 SN - 0962-9343 ER - TY - JOUR AU - Engelbrecht, R. C1 - 5062 C2 - 21867 SP - 38-40 TI - Interoperability and Cards in Health Care. JO - Qual. Life Res. VL - 2 PY - 2004 SN - 0962-9343 ER -