BACKGROUND: Health-related quality of life (HRQoL) is an important patient-reported outcome for all cancer patients, including adult patients with rare solid cancers. However, current knowledge of HRQoL in this population is limited, which hinders the delivery of personalized care. This review aimed to explore the heterogeneity of HRQoL among adult patients with a solid rare cancer across the ten European Reference Network for Rare Adult Solid Cancers (EURACAN) domains and to summarize the HRQoL measures used in clinical research. METHODS: A systematic literature search was conducted to identify all clinical studies assessing HRQoL in adult patients with a solid rare cancer. Four databases (MEDLINE, PubMed, PsycINFO, and Web of Science/Scopus) were searched (February 2023). RESULTS: The search yielded 18,704 articles, of which 1416 articles were fully screened and 463 were eligible for analysis. Of these, 397 studies used generic tools to assess HRQoL, while 270 used tumor-specific instruments. Three EURACAN domains (sarcoma, endocrine tumors, and thoracic tumors) primarily assessed HRQoL using generic questionnaires. Additionally, the rare gynecological tumor, rare male genitourinary, and sarcoma EURACAN domains lacked specific HRQoL measures. Brain, head and neck, and uveal melanoma EURACAN domains used tumor- or domain-specific questionnaires in more than half of the studies. CONCLUSIONS: This state-of-the-art literature review shows that HRQoL assessment is gradually becoming more prevalent in adult solid rare cancer research. A combination of generic, tumor-specific, and domain-specific questionnaires across various rare cancer domains has proven effective in capturing a broad range of HRQoL issues. However, many EURACAN domains still lack specific strategies for assessing HRQoL, which limits the ability to fully understand and address patients' experiences. Future research should prioritize developing comprehensive and robust HRQoL measurement strategies and tools to enable meaningful clinical research and to ensure that the patient voice is incorporated in their clinical care.

• Klíčová slova
• EURACAN, adult rare solid cancers, health-related quality of life, systematic review,
• Publikační typ
• časopisecké články MeSH
• přehledy MeSH

BACKGROUND: Elderly patients with aortic stenosis (AS) not only have a reduced life expectancy but also a reduced quality of life (QoL). The benefits of an AS intervention may be considered a balance between a good QoL and a reasonably extended life. However, the different questionnaires being used to determine the QoL were generally not developed for the specific situation of patients with AS and come with strengths and considerable weaknesses. The objective of this article was to provide an overview of the available QoL instruments in AS research, describe their strengths and weaknesses, and provide our assessment of the utility of the available scoring instruments for QoL measurements in AS. SUMMARY: We identified and reviewed the following instruments that are used in AS research: Short Form Health Survey (SF-36/SF-12), EuroQol-5D (EQ-5D), the Illness Intrusiveness Rating Scale (IIRS), the HeartQoL, the Kansas City Cardiomyopathy Questionnaire (KCCQ), the Minnesota Living with Heart Failure Questionnaire (MLHF), the MacNew Questionnaire, and the Toronto Aortic Stenosis Quality of Life Questionnaire (TASQ). KEY MESSAGES: There is no standardized assessment of QoL in patients with AS. Many different questionnaires are being used, but they are rarely specific for AS. There is a need for AS-specific research into the QoL of patients as life prolongation may compete for an improved QoL in this elderly patient group.

• Klíčová slova
• Aortic stenosis, Quality of life, Quality of life measures, Review,
• MeSH
• aortální stenóza * MeSH
• kvalita života MeSH
• lidé MeSH
• průzkumy a dotazníky MeSH
• senioři MeSH
• srdeční selhání * MeSH
• Check Tag
• lidé MeSH
• senioři MeSH
• Publikační typ
• časopisecké články MeSH
• přehledy MeSH

Psychological burden, such as depression and anxiety, may be associated with axial spondyloarthritis (axSpA) and poor prognosis of nonspecific low back pain (NSLBP). Non-pharmacological therapy is a substantial part of the management of both illnesses. Our study describes the psychological outcomes in patients with axSpA and NSLBP who were actively looking for non-pharmacological therapy. A total of 60 participants (34 with axSpA and 26 with NSLBP) were included in this cross-sectional study. Anxiety and depression were examined using the Beck Anxiety Inventory (BAI) and Beck Depression Inventory (BDI-II), respectively. The relationships between BAI and BDI-II and quality of life (EQ-5D), pain intensity (NRS pain), disease activity (AS disease activity score, ASDAS-CRP), and function (Bath AS Functional Index, BASFI) were determined. The intensity of anxiety and depression did not differ between patients with and without axSpA. In both, axSpA and NSLBP, BAI, and BDI-II scores were inversely correlated with EQ-5D, R = -0.268 (P ˂ .05) and R = -0.486 (P ˂ .0001), respectively. We found a variation in the relationship between pain intensity and psychological outcomes in NSLBP and axSpA. The pain intensity score was correlated with the BDI-II (R = 0.542, P = .001) and BAI (R = 0.489, P = .003) scores only in patients with axSpA. In patients with axSpA, BAI was inversely correlated with disease duration (R = -0.356, P = .039) and positively correlated with increased disease activity and poor function, ASDAS-CRP (R = 0.431, P = .012) and BASFI (R = 0.621, P ˂ .0001) scores. The ASDAS-CRP score was positively correlated with BDI-II (R = 0.562, P = .001), and both disease activity and female sex were identified as risk factors for poor BDI-II outcomes in axSpA patients according to multiple regression analysis. Experiences of anxiety and depression seem to be similar for patients with axSpA and NSLBP in this selected group of participants. However, pain intensity may influence psychological outcomes, mainly in patients with axSpA. Disease activity, impaired function, and female sex were risk factors for anxiety and depression in patients with axSpA.

• MeSH
• ankylózující spondylitida * MeSH
• axiální spondyloartritida * MeSH
• bolesti zad MeSH
• deprese etiologie   psychologie   terapie   MeSH
• kvalita života MeSH
• lidé MeSH
• lumbalgie * terapie   MeSH
• průřezové studie MeSH
• spondylartritida * farmakoterapie   MeSH
• stupeň závažnosti nemoci MeSH
• úzkost psychologie   terapie   MeSH
• Check Tag
• lidé MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH

Effective preventive care programs are urgently needed during humanitarian crises, as has been especially obvious during the COVID-19 pandemic. A pragmatic trial was designed: hybridized intervention (Diabetes Prevention Program [DPP] + medical nutrition therapy + liquid diet [LD]; LD group) vs. DPP only (DPP group). The participants were adults who were overweight/obese and at high risk of type 2 diabetes mellitus (T2DM). The LD consisted of a “homemade” milk- and fruit-juice-based beverage. Pandemic restrictions delayed the program by nine months, tripled the amount of time required for screening, and reduced the total sample to 60%. Eventually, 127 participants were randomized, and 94/127 participants (74.0%) completed the first phase. Participant dropout was influenced by migration, COVID-19 symptoms, education level, and socioeconomic status. In two months, the LD group lost 2.9 kg (p < 0.001) and the DPP group, 2.2 kg (p < 0.001) (between-group p = 0.170), with improvements in their cardiometabolic risk factors. At this stage, the DPP was shown to be feasible and effective, demonstrating weight loss with the improvement of cardiometabolic risk factors in a primary setting in Venezuela, a middle-income country with a chronic humanitarian crisis, during the COVID-19 pandemic.

• Klíčová slova
• COVID-19, humanitarian crisis, primary prevention, type 2 diabetes mellitus,
• MeSH
• COVID-19 * epidemiologie   prevence a kontrola   MeSH
• diabetes mellitus 2. typu * epidemiologie   etiologie   prevence a kontrola   MeSH
• dospělí MeSH
• lidé MeSH
• pandemie prevence a kontrola   MeSH
• SARS-CoV-2 MeSH
• studie proveditelnosti MeSH
• Check Tag
• dospělí MeSH
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• randomizované kontrolované studie MeSH
• Geografické názvy
• Venezuela epidemiologie   MeSH

Local inflammation in axial spondyloarthritis (axSpA) leads to the release of collagen metabolites from the disease-affected tissue. We investigated whether collagen metabolites were associated with disease activity and could distinguish non-radiographic(nr)-axSpA from ankylosing spondylitis (AS). A total of 193 axSpA patients (nr-axSpA, n = 121 and AS, n = 72) and asymptomatic controls (n = 100) were included. Serum levels of metalloproteinase (MMP)-degraded collagen type I (C1M), type II (C2M), type III (C3M) and type IV (C4M2) were quantified by enzyme-linked immunosorbent assay (ELISA). All metabolites were higher in axSpA than in controls (all p < 0.001). Serum levels of C1M, C3M, and C4M2 were increased in AS compared to nr-axSpA (43.4 ng/mL vs. 34.6; p < 0.001, 15.4 vs. 12.8; p = 0.001, and 27.8 vs. 22.4; p < 0.001). The best metabolite to differentiate between axSpA and controls was C3M (AUC 0.95; specificity 92.0, sensitivity 83.4). C1M correlated with ASDAS-CRP in nr-axSpA (ρ = 0.37; p < 0.001) and AS (ρ = 0.57; p < 0.001). C1M, C3M, and C4M2 were associated with ASDAS-CRP in AS and nr-axSpA after adjustment for age, gender, and disease duration. Serum levels of collagen metabolites were significantly higher in AS and nr-axSpA than in controls. Moreover, the present study indicates that collagen metabolites reflect disease activity and are useful biomarkers of axSpA.

• MeSH
• ankylózující spondylitida krev   diagnóza   MeSH
• biologické markery krev   MeSH
• diferenciální diagnóza MeSH
• dospělí MeSH
• fibrilární kolageny metabolismus   MeSH
• kolagen typ II metabolismus   MeSH
• kolagen typ III metabolismus   MeSH
• kolagen typu I metabolismus   MeSH
• kolagen typu IV metabolismus   MeSH
• lidé MeSH
• spondylartritida krev   diagnóza   MeSH
• Check Tag
• dospělí MeSH
• lidé MeSH
• mužské pohlaví MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH
• Názvy látek
• biologické markery MeSH
• fibrilární kolageny MeSH
• kolagen typ II MeSH
• kolagen typ III MeSH
• kolagen typu I MeSH
• kolagen typu IV MeSH

PURPOSE: The investigation aimed to explore the association between personality traits, stressful life events, quality of life on anthropometric characteristics (waist/height ratio and percentage of visceral fat). METHOD: A total of 227 participants took part in this cross-sectional study. Participants completed the Social Readjustment Rating Scale (SRRS), Temperament and Character Inventory-Revised, Type-D Scale (DS-14), EuroQol Group 5-Dimension Self-Report Questionnaire (EQ-5D), and demographic questionnaire. Two anthropometric parameters were measured: Waist/height ratio and Percentage of the visceral fat. RESULTS: The average age of participants was 39.6±12.9 years, 60.4% women. The 41.8% of participants were overweight or obese. Regression analysis found a significant link between Harm-avoidance and EQ-5D visual analog scale (VAS) with Waist/height ratio in women and Reward dependence and Cooperativeness with Waist/height ratio in men. In regression analysis, the score of life events (SRRS) has statistically significant linked to Percentage of the visceral fat in women. The regression analysis also found a significant link between Novelty seeking, DS14, Negative affectivity, and EQ-5D VAS with Percentage of the visceral fat in women. CONCLUSION: Significant associations between live events, personality traits, and body anthropometric measures were recognized. The differences were recognized between women and men. Outcomes propose some promising tools by which personality factors may influence overweight and obesity.

• Klíčová slova
• anthropometric characteristics, life events, negative affectivity, overweight, personality traits, quality of life, sex differences,
• Publikační typ
• časopisecké články MeSH

BACKROUND: Guidelines for economic analyses of health care technologies require local input data for reimbursement decisions in the countries of Central and Eastern Europe (CEE). The aim of this study was to systematically review and analyse the available empirical studies using the EQ-5D instrument as a measure of the health-related quality of life (HRQoL) in patients with neurological diseases. METHODS: A systematic literature search was performed up to 1st April 2018 to identify relevant studies in eight selected CEE countries. Original articles reporting on studies of neurological diseases using the EQ-5D instrument were analysed. RESULTS: Thirty-six articles, describing the results of 38 samples of patients and a total of 13,005 patients were included in the review. Most studies were from Hungary (44.4%) and none from Romania or Slovakia. EQ-5D utility scores were reported in 33 (91.7%) articles. In multiple sclerosis (MS) being the most represented disease, the average utility scores ranged from 0.49 in Austria to 0.80 in Poland with a weighted average of 0.69. EQ VAS scores for MS ranged from 39 in Czech Republic to 72.0 in Poland, with weighted average of 59.1. MS patients, together with epilepsy and essential tremor patients, estimated their HRQoL among the highest. CONCLUSIONS: EQ-5D research activity in neurology has been increasing through the years in studied CEE countries. There are clinical areas with the significant social burden, such as a migraine or meningitis, that are completely lacking data, other areas, such as stroke or epilepsy, with very scarce data.

• Klíčová slova
• Central and Eastern European countries, EQ-5D, Health-related quality of life, Neurological diseases,
• MeSH
• bolest epidemiologie   MeSH
• činnosti denního života MeSH
• duševní zdraví MeSH
• kvalita života psychologie   MeSH
• lidé MeSH
• nemoci nervového systému epidemiologie   psychologie   MeSH
• péče o sebe MeSH
• stupeň závažnosti nemoci MeSH
• tělesná a funkční výkonnost MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• systematický přehled MeSH
• Geografické názvy
• Evropa epidemiologie   MeSH
• východní Evropa epidemiologie   MeSH

The objective of this study was to investigate the patient-reported outcomes (PROs) and matrix metalloproteinase (MMP) derived extracellular matrix (ECM) biomarkers in non-radiographic (nr)-axial spondyloarthritis (axSpA) and radiographic (r)-axSpA after exercise intervention. Forty-six axSpA patients with stable disease and treatment underwent 24 weeks long exercise intervention. The clinical and laboratory assessments were performed at baseline and at follow-up. The PROs included evaluation of patient's global disease activity (PGDA), disease activity (DA7), pain (PAIN7) and fatigue during last week and quality of life questionnaires. ELISAs for MMP-degraded collagen type II, C-reactive protein (CRPM) and citrullinated vimentin were used. The data of 23 r-axSpA and 19 nr-axSpA were analysed. The PDGA was similar for nr-axSpA (35.2 ± 18.9) and r-axSpA (33.4 ± 22.3) at baseline, improved significantly after intervention (p < 0.01) and the change of PDGA was almost identical for nr-axSpA (- 10.0 ± 15.4) and r-axSpA (- 9.8 ± 11.9). Evaluations of DA7 and PAIN7 were significantly improved only in nr-axSpA (3.5 ± 2.3 and 34.7 ± 25.6 at baseline vs. 2.1 ± 1.9 and 21.0 ± 20.5, respectively, p < 0.01). The decline of DA7 and PAIN7 was more profound, but not significantly in nr-axSpA than in r-axSpA (- 1.4 ± 1.6 and - 13.7 ± 17.4 vs. - 0.5 ± 3.1 and - 3.7 ± 3.3, respectively). The quality of life was not changed. At baseline, increased levels of CRPM were found in r-axSpA (14.85 ± 4.10) compared to nr-axSpA (11.83 ± 3.20), p < 0.05, but all three biomarkers were not influenced by exercise therapy. We found that exercise therapy mainly in the nr-axSpA improves PROs, but not ECM turnover biomarkers. This indicates that exercise therapy is important for patients' health but does not affect ECM turnover.

• Klíčová slova
• axial spondyloarthritis, exercise therapy, extracellular matrix, matrix metalloproteinase,
• MeSH
• biologické markery analýza   MeSH
• C-reaktivní protein analýza   MeSH
• dospělí MeSH
• hodnocení výsledků péče pacientem * MeSH
• kvalita života MeSH
• lidé MeSH
• matrixové metaloproteinasy analýza   MeSH
• peptidové mapování MeSH
• spondylartritida rehabilitace   MeSH
• terapie cvičením * MeSH
• Check Tag
• dospělí MeSH
• lidé MeSH
• mužské pohlaví MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• Názvy látek
• biologické markery MeSH
• C-reaktivní protein MeSH
• matrixové metaloproteinasy MeSH

PURPOSE: Whether the quality of the ethical climate in the intensive care unit (ICU) improves the identification of patients receiving excessive care and affects patient outcomes is unknown. METHODS: In this prospective observational study, perceptions of excessive care (PECs) by clinicians working in 68 ICUs in Europe and the USA were collected daily during a 28-day period. The quality of the ethical climate in the ICUs was assessed via a validated questionnaire. We compared the combined endpoint (death, not at home or poor quality of life at 1 year) of patients with PECs and the time from PECs until written treatment-limitation decisions (TLDs) and death across the four climates defined via cluster analysis. RESULTS: Of the 4747 eligible clinicians, 2992 (63%) evaluated the ethical climate in their ICU. Of the 321 and 623 patients not admitted for monitoring only in ICUs with a good (n = 12, 18%) and poor (n = 24, 35%) climate, 36 (11%) and 74 (12%), respectively were identified with PECs by at least two clinicians. Of the 35 and 71 identified patients with an available combined endpoint, 100% (95% CI 90.0-1.00) and 85.9% (75.4-92.0) (P = 0.02) attained that endpoint. The risk of death (HR 1.88, 95% CI 1.20-2.92) or receiving a written TLD (HR 2.32, CI 1.11-4.85) in patients with PECs by at least two clinicians was higher in ICUs with a good climate than in those with a poor one. The differences between ICUs with an average climate, with (n = 12, 18%) or without (n = 20, 29%) nursing involvement at the end of life, and ICUs with a poor climate were less obvious but still in favour of the former. CONCLUSION: Enhancing the quality of the ethical climate in the ICU may improve both the identification of patients receiving excessive care and the decision-making process at the end of life.

• Klíčová slova
• Decision-making, Ethical climate, Interdisciplinary collaboration, Patient outcomes, Perceived excessive care, Treatment-limitation decisions,
• MeSH
• jednotky intenzivní péče * etika   MeSH
• kvalita života * MeSH
• lidé MeSH
• organizační kultura * MeSH
• procedury zbytečné * MeSH
• prospektivní studie MeSH
• věkové faktory MeSH
• Check Tag
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• pozorovací studie MeSH
• Geografické názvy
• Evropa MeSH

BACKGROUND: Little is known about the association of atrial fibrillation symptom burden with quality of life and outcomes. METHODS AND RESULTS: In the Prevention of Thromboembolic Events-European Registry in Atrial Fibrillation (n=6196 patients with atrial fibrillation; mean±SD age, 71.8±10.4 years; 39.7% women), we assessed European Heart Rhythm Association score symptoms and calculated correlations with the standardized health status questionnaire (EQ-5D-5L). Patients were followed up for atrial fibrillation therapies and outcomes (stroke/transient ischemic attack/arterial thromboembolism, coronary events, heart failure, and major bleeding) over 1 year. Most individuals (92%) experienced symptoms. Correlations with health status and quality of life were modest. In multivariable-adjusted regression models, the dichotomized European Heart Rhythm Association score (intermediate/frequent versus never/occasional symptoms) was associated with cardioversions (odds ratio [OR], 1.21; 95% confidence interval [CI], 1.01-1.45) and catheter ablation (OR, 1.97; 95% CI, 1.44-2.69), and inversely related with heart rate control (OR, 0.80; 95% CI, 0.70-0.92) and heart failure incidence (OR, 1.65; 95% CI, 1.16-2.34). Anxiety was inversely related with stroke/transient ischemic attack/arterial thromboembolism (OR, 0.55; 95% CI, 0.32-0.93), whereas chest pain related positively with coronary events (OR, 2.45; 95% CI, 1.42-4.22). Fatigue (OR, 1.84; 95% CI, 1.30-2.60), dyspnea (OR, 2.33; 95% CI, 1.63-3.33), and anxiety (OR, 1.72; 95% CI, 1.16-2.55) were associated with heart failure incidence. Palpitations were positively associated with cardioversion (OR, 1.32; 95% CI, 1.08-1.61) and ablation therapy (OR, 2.02; 95% CI, 1.48-2.76). CONCLUSIONS: A higher symptom burden, in particular palpitations, predicted interventions to restore sinus rhythm. The score itself had limited predictive value, but its individual components were related to different and specific clinical events, and may thus be helpful to target patient management.

• Klíčová slova
• European Heart Rhythm Association score, anticoagulation, atrial fibrillation, atrial fibrillation symptoms, quality of life,
• MeSH
• ablace MeSH
• časové faktory MeSH
• elektrická defibrilace MeSH
• fibrilace síní diagnóza   epidemiologie   patofyziologie   chirurgie   MeSH
• kvalita života * MeSH
• lidé středního věku MeSH
• lidé MeSH
• prediktivní hodnota testů MeSH
• prospektivní studie MeSH
• registrace MeSH
• rizikové faktory MeSH
• senioři nad 80 let MeSH
• senioři MeSH
• srdeční frekvence MeSH
• výsledek terapie MeSH
• zdravotní stav * MeSH
• Check Tag
• lidé středního věku MeSH
• lidé MeSH
• mužské pohlaví MeSH
• senioři nad 80 let MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• multicentrická studie MeSH
• práce podpořená grantem MeSH
• Geografické názvy
• Evropa epidemiologie   MeSH