1. Patient-reported health-related quality of life impact and symptom severity in patients with Lyme borreliosis in the Burden of Lyme Disease (BOLD) studyHolly Yu, Amanda R. Mercadante, Kate Halsby, Alexandra Loew-Baselli, Ye Tan, Juanita Edwards, Franc Strle, 2026, izvirni znanstveni članek Povzetek: Lyme borreliosis (LB) can manifest as a localized infection or, if left untreated, disseminated disease. This analysis used Patient-Reported Outcome tools to assess general health, fatigue, pain, and cognitive function in patients with localized or disseminated LB, compared with age- and site-matched controls without LB. All participants were enrolled in the Burden of Lyme Disease (BOLD) study; LB cases were assessed at 3 time points: the enrollment visit, and two follow-up visits conducted within 10 months of enrollment. Controls were evaluated at 2 time points: the enrollment contact and a follow-up contact 16–18 months post-enrollment. Symptom severity and general health quality between groups were compared using two-tailed Student’s t-tests and multivariate regression analyses. Disseminated LB cases reported greater fatigue and pain than localized LB (disseminated LB fatigue scores: 4.1, 3.7, and 3.5 at Visits 1, 2, and 3, respectively vs. localized LB: 2.9, 3.0, and 2.9; disseminated LB pain scores: 2.5, 1.6, and 1.3 vs. localized LB: 0.9, 0.6, and 0.8) and controls (fatigue score: 3.2; pain score: 1.0). Disseminated LB was also associated with reduced health-related quality of life. The results of this study indicate that health-related quality of life may vary by disease stage and that patients with disseminated disease showed persistent impairment during the acute phase and at 10-month follow-up.
Ključne besede: Lyme borreliosis, Lyme disease, disseminated LB, localized LB, patient-reported outcomes, quality of life
Objavljeno v DiRROS: 29.07.2026; Ogledov: 113; Prenosov: 66
 Celotno besedilo (951,27 KB)
Gradivo ima več datotek! Več... |
2. Efficacy of overnight leave-on sandwich therapy with 5% cysteamine and ectoine cream compared to hydroquinone 4% cream for treatment of melasma : a double-blind randomized controlled trialArie Kusumawardani, Alamanda Murasmita, Ervina Rosmarwat, Lilik Norawati Ashadi, Silvia V. Setiawan, Suzana Nikolovska, Sinta Murlistyarini, Nurrahma Wahyu Fitriyani, 2025, izvirni znanstveni članek Povzetek: Introduction: Melasma is a common hypermelanosis presenting as dark patches on sun-exposed skin. Its treatment remains challenging due to slow response, especially in chronic cases. This study compares the efficacy of 5% cysteamine with ectoine cream versus 4% hydroquinone with ectoine cream in treating melasma. Methods: A double-blind randomized controlled trial was conducted from January to March 2024 across three centers in Indonesia: Dr. Moewardi Hospital (Surakarta), Gatot Soebroto Army Hospital (Jakarta), and Dr. Saiful Anwar Hospital (Malang). Participants were randomly assigned to Group A (5% cysteamine + ectoine) or Group B (4% hydroquinone + ectoine). Efficacy was evaluated using the modified Melasma Area and Severity Index (mMASI) and the JANUS-I skin analyzer. Quality of life was assessed using Melasma Quality of Life Scale (MELASQoL) and Dermatology Life Quality Index (DLQI) questionnaires. Results: Both groups demonstrated reduced mMASI and JANUS-I scores, with slightly greater improvement in Group A, although the difference was not statistically significant (p > 0.05). Quality of living also improved in both groups, with no significant difference between them (p > 0.05). Conclusions: Both treatment regimens effectively improved melasma pigmentation and QoL. Either 5% cysteamine with ectoine or 4% hydroquinone with ectoine can be considered viable treatment options for melasma.
Ključne besede: cysteamine, hydroquinone, therapeutic, quality of life, melasma
Objavljeno v DiRROS: 15.06.2026; Ogledov: 307; Prenosov: 221
Celotno besedilo (26,31 MB)
Gradivo ima več datotek! Več... |
3. Validation and reliability of the Slovenian translation of the Adherence to Exercise for Musculoskeletal Pain Tool (ATEMPT)Suzana Pustivšek, Maja Dakskobler, Andraž Furlan, Tim Kambič, 2026, izvirni znanstveni članek Povzetek: Introduction Subjective measures for assessing exercise adherence in patients with non-cancer widespread chronic muscle pain (CMP) are limited. Following the recent development of the valid and reliable Adherence To Exercise for Musculoskeletal Pain Tool (ATEMPT), this study aimed to assess the reliability of the Slovenian translation of the questionnaire for measuring exercise adherence in Slovenian patients with CMP. Methods This cross-sectional study included 107 patients with CMP (95% female), with a mean (SD) age of 56 (8) years, to assess the reliability and construct validity of the Slovenian version of ATEMPT. Following initial translation into Slovenian by 2 experienced translators and minor adaptation of terminology after discussing with people and an exercise specialist, the questionnaire was administered on 2 occasions, with a median (IQR) of 8 (0) days between assessments. Results Overall, test-retest comparisons showed similar scores for each item and for the score. Correlations between test and retest scores for each item and the total score were positive and moderate to high (all 0.533 < r < 0.733, all p < 0.001). Reliability of each item and the total score was significant and ranged from moderate (first, third and fourth items; intraclass correlation coefficients [ICCs] = 0.688-0.700) to good (second and sixth items and overall score; ICC = 0.824-0.852). Construct validity was strong, with all items loading onto a single underlying factor that explained 57% of the variance in ATEMPT scores. Conclusions The Slovenian translation of ATEMPT demonstrated moderate to excellent measurement properties and can therefore be used to assess exercise adherence in people with CMP.
Ključne besede: exercise, adherence, chronic musculoskeletal pain, quality of life, physical activity
Objavljeno v DiRROS: 11.06.2026; Ogledov: 233; Prenosov: 277
Celotno besedilo (340,81 KB)
Gradivo ima več datotek! Več... |
4. Quality of life in Slovenian patients with skull base tumours : cross-cultural adaptation and validation of a Slovenian skull base inventoryDomen Vozel, Jure Urbančič, Saba Battelino, Nina Božanić Urbančič, Nejc Steiner, Tomislav Felbabić, Roman Bošnjak, 2026, izvirni znanstveni članek Povzetek: Background: Skull base tumours frequently manifest as severe physical morbidity and quality of life (QoL) impairment. The disease-related QoL measurement can be performed with disease specific questionnaires, e.g. Skull base inventory (SBI). Patients and methods: The study consisted of two parts: (1) cross-cultural adaptation and psychometric testing of the Slovenian SBI (SBI-SLO) and (2) QoL assessment in skull base tumours. Two groups completed the SBI-SLO: 1.) adult patients without prior treatment of anterior, anterolateral and/or central skull base and 2.) healthy controls. Patients with skull-base tumours were further analysed for difference in SBI-SLO total score and domain scores between 1.) benign and malignant tumours and 2.) pituitary macroadenomas and other benign tumours. Results: 59 patients (46% male, 54% female, median age 57.7 years) and 47 subjects from control group (49% male, 51% female, median age 42,2 years) completed SBI-SLO, which demonstrated an excellent level of internal consistency (Cronbach's alpha = 0.924) and excellent test-retest reliability (intraclass correlation coefficient [ICCA] = 0.952). The discriminant validity was confirmed (p = 0.000). SBI-SLO total score, emotional, other and family domain scores were lower in malignant than in benign tumours (p = 0.031, p = 0.038, p = 0.008, and p = 0.046, respectively). Macroadenoma and other benign tumours differed only in neurological domain score (p < 0.05). Conclusions: A skull base tumour, especially malignant, can exert a substantial detrimental effect on a patient's quality of life. The SBI is a key tool for assessing QoL, also available in Slovenian.
Ključne besede: quality of life, skull base, neoplasms, meningioma, carcinoma
Objavljeno v DiRROS: 24.04.2026; Ogledov: 303; Prenosov: 276
Celotno besedilo (862,32 KB)
Gradivo ima več datotek! Več... |
5. Topical corticosteroid phobia in childhood atopic dermatitis : a study using the topicop scoreMateja Starbek Zorko, Vid Bukovec, Tanja Fantulin, 2026, izvirni znanstveni članek Povzetek: Background: Topical corticosteroid phobia (CSP) is a significant barrier to the effective treatment of atopic dermatitis (AD). This is the first study to evaluate the CSP prevalence among parents of children with AD in Slovenia and to identify contributing factors. Methods: We conducted a cross-sectional study between March 2021 and December 2023. Parents of children with dermatologist-confirmed AD, aged 3 months to 18 years, completed the validated TOPICOP questionnaire, supplemental questions and the (F)DLQI questionnaire. The SCORAD index was used to assess the severity of their children's AD disease. Statistical analyses included the Shapiro-Wilk test, two-tailed independent t-test, ANOVA, followed by Tukey post hoc testing and the Pearson correlation coefficient. Results: Among 117 parents (81.2% mothers), the mean TOPICOP score was 48.2% (SD 15.1). Fear was the highest-scoring TOPICOP domain (53.7%). CSP was significantly higher in parents of children with more severe AD based on SCORAD (p = 0.033) and in families with higher (F)DLQI scores (r = 0.311, p = 0.002). Notably, our results suggest that parents of children in single-parent households had significantly higher CSP (p = 0.035), a novel finding that warrants cautious interpretation due to the small subgroup size. Information obtained online about the potential dangers of topical corticosteroids (TCS) correlated with higher CSP (p < 0.001). Conclusion: CSP is prevalent among Slovenian parents of children with AD and is particularly pronounced in cases of more severe disease and single-parent households, a novel and previously undescribed finding. Given that CSP is often influenced by nonmedical information sources, structured education and support by all healthcare providers is essential. Keywords: atopic dermatitis; child; corticosteroids; cross-sectional studies; parents; quality of life; severity of illness index; topical.
Ključne besede: atopic dermatitis, severity of illness index, child, parents, quality of life
Objavljeno v DiRROS: 23.04.2026; Ogledov: 311; Prenosov: 322
Celotno besedilo (836,88 KB)
Gradivo ima več datotek! Več... |
6. |
7. Psychometric validation of the ultrashort Slovenian (OHIP-SVN5) and Croatian (OHIP-CRO5) Oral Health Impact Profile questionnairesKsenija Rener-Sitar, Asja Čelebić, Miha Križaj, Nikola Petričević, 2025, izvirni znanstveni članek Ključne besede: oral health, quality of life, questionnaire, validity, reliability, Slovenia, Croatia
Objavljeno v DiRROS: 20.04.2026; Ogledov: 354; Prenosov: 257
Celotno besedilo (350,01 KB)
Gradivo ima več datotek! Več... |
8. Assessing health-related quality of life outcomes through sensory modulation profiles in adults with atypical sensory processing: a cross-sectional studyPatricija Goubar, Tomaž Velnar, 2025, izvirni znanstveni članek Povzetek: Introduction: Atypical sensory modulation—manifesting as low registration, sensitivity, avoidance, or sensory seeking—can significantly affect adults’ daily functioning and health-related quality of life (HRQoL). Despite growing interest in sensory diversity, its relationship with HRQoL remains insufficiently explored in adult populations. Objectives: This study investigated the association between sensory modulation profiles and HRQoL outcomes in adults, with the aim of informing neurodiversity-affirming clinical approaches. Methods: A cross-sectional study included 86 adults (aged 23–54), evenly divided into two groups based on typical vs. atypical sensory modulation profiles, assessed via the Adolescent/Adult Sensory Profile (AASP). HRQoL was measured using the SF-36. Statistical analyses included the Kolmogorov–Smirnov test, Mann–Whitney U test, and Pearson’s correlation. Results: Adults with atypical sensory modulation profiles reported significantly lower HRQoL across all eight SF-36 domains (p < .001), most notably in domains related to fatigue, pain, mental health, and social functioning. No significant associations were found between HRQoL outcomes and age or gender, suggesting sensory modulation profiles were the primary factor. Conclusion: Sensory modulation differences are strongly associated with reduced HRQoL, independent of demographic factors. These findings underscore the importance of integrating sensory-informed, person-centered strategies in adult care to support well-being and promote environmental accommodation over pathologisation.
Ključne besede: sensory modulation disorder, sensory integration dysfunction, sensory processing disorder, health-related quality of life, health status indicators, adults, sf-36 questionnaire, cross-sectional study
Objavljeno v DiRROS: 15.04.2026; Ogledov: 343; Prenosov: 259
Celotno besedilo (363,72 KB)
Gradivo ima več datotek! Več... |
9. Oral health-related quality of life after allogeneic bone marrow transplant : a cross-sectional studyNina Vovk, Manca Urek, Ksenija Cankar, Lidija Nemeth, 2025, izvirni znanstveni članek Povzetek: Objectives: The aim of this study was to evaluate the oral health-related quality of life of patients with chronic graft-versus-host disease. Methods: A total of 22 patients with graft-versus-host disease aged 45.05 ± 14.66 years were enrolled in a single-centre cross-sectional study. Data from questionnaires on general health and diet, clinical examinations, and salivary tests were used to assess caries risks using the Cariogram computer programme. The Slovenian version of the Oral Health Impact Profile Questionnaire (OHIPSVN) was used to determine the oral health-related quality of life. Results: Compared to healthy individuals, patients with chronic graft-versus-host disease had a lower oral healthrelated quality of life and a lower stimulated salivary flow rate (in both cases p < 0.001). The OHIP summary score correlated with stimulated salivary pH (R = 0.4916, p = 0.0277) and caries risk (R = 0.5420, p = 0.0111). Conclusions: In conclusion, our results confirm that cGVHD has a negative impact on oral health-related quality of life due to lower stimulated salivary pH and elevated caries risk (reduced salivary pH, flow rate, buffering capacity, and elevated Streptococcus mutans and Lactobacillus bacteria count). These findings emphasise the importance of a comprehensive assessment of oral health and preventive care in patients with cGVHD and suggest that the integration of clinical and quality of life measures could lead to improved patient care strategies.
Ključne besede: dental caries, oral health, quality of life
Objavljeno v DiRROS: 14.04.2026; Ogledov: 307; Prenosov: 195
Celotno besedilo (1,20 MB)
Gradivo ima več datotek! Več... |
10. Mapping EQ-5D-5L utility scores from the Severe Asthma Questionnaire in the SHARP CRC RegistryFleur L. Meulmeester, M. Elske Van den Akker-van Marle, Lianne ten Have, Joseph Lanario, Michael E. Hyland, Anne Mcgahey, Dominique Hamerlijnck, Aruna T. Bansal, Anneke Ten Brinke, Kim De Jong, Tania Wainwright, Joanna Tilley, Simon Doe, K. Bayani, Valentyina Yasinska, Oksana Tenselius, Barbro Dahlén, Kristina Bieksiene, Jolita Palacionyte, Clàudia Loureiro, M Gonçalves Cunha, Diogo Canhoto, Sanja Hromiš, Sabina Škrgat, Ana Žaže Bertoncel, Peter Kopač, Mariana Paula Rezelj, Matthew Masoli, Jacob K. Sont, 2026, izvirni znanstveni članek Povzetek: Background Severe asthma imposes a substantial burden on individuals’ health-related quality of life (HRQoL), which might not be fully captured by generic instruments. The Severe Asthma Questionnaire (SAQ) is a validated disease-specific HRQoL instrument capturing the unique lived experience of people with severe asthma. However, the SAQ does not generate preference-based utility values required for health economic evaluations. This study aimed to develop and validate mapping algorithms from the SAQ to the EuroQol (EQ)-5D-5L, enabling estimation of utility values when EQ-5D data are unavailable. Methods We used baseline and 6-month data from the longitudinal, multicentre SHARP Burden of Asthma study, including adults with severe asthma across 7 European countries. Direct mapping (ordinary least squares and beta-mixture regression models) using the UK value set and indirect mapping (ordered probit regression models) were developed with baseline data to predict EQ-5D-5L utility values from SAQ scores. Performance was assessed via mean absolute error (MAE), root mean square error (RMSE), and R2, with 6-month data used for validation. Results Data from 327 patients were included. The beta-mixture model using SAQ subscales marginally outperformed the other models in the development set (MAE=0.090, RMSE=0.129, R2=0.704), whereas in the validation set the ordered probit regression model showed the best predictive performance (MAE=0.106, RMSE=0.151, R2=0.589). Conclusions Direct mapping with beta-mixture regression showed good overall performance, aligning with prior studies. Indirect mapping may be advantageous in settings requiring flexibility across EQ-5D-5L value sets. These findings demonstrate that EQ-5D-5L utility values can be reliably estimated from the SAQ, supporting use of the instrument in health-economic analyses.
Ključne besede: questionnaires, quality of life, health economic evaluation, patient registries
Objavljeno v DiRROS: 23.03.2026; Ogledov: 397; Prenosov: 550
Celotno besedilo (1,87 MB)
Gradivo ima več datotek! Več... |
