1. Palliative care for children and adults with inherited metabolic disease in Europe : an underutilised service for supportive treatment and careAnja Lee, Yngve Thomas Bliksrud, Michela Onali, Julia Neugebauer, Francois Eyskens, 2025, original scientific article Abstract: Palliative care should be an integral part of follow-up for patients with life-limiting/life-threatening conditions, irrespective of age and diagnosis. Many patients with inherited metabolic disorders (IMD) have palliative care needs due to multi-systemic conditions without curative treatment options. To map the organisation and accessibility of palliative care across European IMD expert centres, and to explore the experiences of IMD physicians with palliative care, the European Reference Network for Hereditary Metabolic Disorders (MetabERN) invited physicians from all 103 member institutions to participate in a survey covering various aspects of palliative care. Ninety-two physicians from 63 institutions in 23 countries participated. A national plan or strategy for palliative care had been established in most countries (87%). Both children (91%) and adults (89%) had access to palliative care services. Most paediatric (86%) and many adult IMD physicians (67%) used advance care planning. A total of 284 referrals to palliative care were reported, mostly IMD patients with lysosomal and mitochondrial disorders, and neurological, respiratory, cognitive and gastrointestinal comorbidities. However, during the past 5 years, the majority of physicians (60%) had referred 20% or fewer of their deceased patients to palliative care. Although palliative care is available in most European IMD expert centres, only a small proportion of deceased IMD patients has been referred. The findings of this study indicate both a misconception and underutilisation of modern palliative care services. Addressing existing barriers is essential, and both IMD physicians and patients may need more information about available palliative care services and up-to-date indications for referral.
Keywords: palliative care, quality of life, patients, paediatric palliative care, inherited metabolic diseases, genetic disorders, MetabERN, The European Reference Network for Hereditary Metabolic Disorders
Published in DiRROS: 11.12.2025; Views: 16; Downloads: 9
 Full text (847,75 KB)
This document has many files! More... |
2. Gender impact on quality of life in colorectal cancer survivorsAleksandra Grbič, Majda Čaušević, Sara Brodarič, Mojca Birk, Irena Oblak, 2025, original scientific article Abstract: The aim of the study was to evaluate gender-specific differences in the quality of life (QoL) and late effects among colorectal cancer patients during the first two years after treatment, to inform and improve long-term follow-up care and clinical management strategies. Patients and methods A total of 239 colorectal cancer patients were included, 56% males and 44% females, mostly in the age range 60–69 years. They were treated at the Institute of Oncology Ljubljana, during the time period from 1st September 2023 to 1st May 2024. In addition to demographic data, we included clinical data on disease and outcomes collected using the standardized quality of life questionnaires of European Organization for Research and Treatment of Cancer (EORTC) named EORTC QLQ-30 and EORTC QLQ-CR29 for colorectal cancer, respectively. Results Females were more likely to experience emotional problems (p = 0.002), higher levels of fatigue (p < 0.001), insomnia (p = 0.015), nausea and vomiting (p = 0.007), which may also be associated with poorer appetite in females. Males reported better body image than female (p = 0.047), lower levels of anxiety (p = 0.029), less frequently reported perceived weight loss or gain (p = 0.010). Male reported more stool frequency (p = 0.045), and also had more sever dysuria compared to female (p = 0.008). Conclusions The results provide the opportunity to improve the clinical management of long-term follow-up and care planning, taking into consideration the gender-specific needs of colorectal cancer survivors.
Keywords: quality of life, late effects, colorectal cancer
Published in DiRROS: 26.11.2025; Views: 123; Downloads: 34
Full text (743,07 KB) |
3. Primerjava mnenj prebivalcev treh tipov stanovanjskih območij v Kijevu glede kakovosti življenjaOlena Dronova, Diana Khomenko, Stanley D. Brunn, 2022, original scientific article Abstract: According to Global North urban studies, the traditional low-rise mixed-function perimeter block is the most attractive urban morphology in terms of organization of space, time, values, and social interactions. This study examines how valid these basic theses are regarding the comfort of urban housing morphological types in Kyiv, the capital of Ukraine. We compare residents’ quality of life and analyse the differences in residents’ behavioural patterns and spatial perception in different morphological types of housing to identify distinguishing features of the most comfortable urban form. Using expert evaluation and surveys, we assess history; jobs; social, educational, and cultural services; environmental indicators; security levels; and public activity in three different neighbourhoods: Zhulyany (with detached houses), Podil (with low-rise perimeter blocks), and Rusanivka (with Soviet high-rises). The results reveal that the Soviet neighbourhood, Rusanivka, leads in terms of both objective indicators and residents’ perception as the most comfortable living area. This finding contradicts generally accepted theories about exemplary and attractive urban morphology. This preference is based on the planning and construction priorities of the unique social system of Rusanivka, where its human-centeredness and a thoughtful integrated approach are highly valued.
Keywords: Kyiv, perceptions, quality of life, neighbourhoods, urban morphology
Published in DiRROS: 05.08.2025; Views: 391; Downloads: 204
Full text (528,06 KB)
This document has many files! More... |
4. |
5. Post-physical therapy 4-month in-home dynamic standing protocol maintains physical therapy gains and improves mobility, balance confidence, fear of falling and quality of life in Parkinson’s disease : a randomized controlled examiner-blinded feasibility clinical trialMiriam van Emde Boas, Chatkaew Pongmala, Abigail M. Biddix, Alexis Griggs, Austin T. Luker, Giulia Carli, Uroš Marušič, Nicolaas I. Bohnen, 2024, original scientific article Abstract: Objective: Parkinson’s patients will experience mobility disturbances with disease progression. Beneficial effects of physical therapy are short-lasting. Novel interventions are needed to maintain these benefits. Methods: Fourteen Parkinson’s patients (71±4.08 years) participated in a randomized controlled examiner-blinded feasibility clinical trial. After 12 physical therapy sessions, the intervention group received a height-adjustable desk that facilitates stepping while standing, for 4 months. Explorative outcome measures included MDS-UPDRS II, III, TUG, 8.5m walking test, PDQ-39, sABC, sFES, DEXA scans, and lower extremity strength. Results: Post-physical-therapy, everyone significantly improved on the MDS-UPDRS II, III, TUG, and 8.5m walking test, and PDQ-39. (p<0.05) After 4 months, the control group regressed towards pre-physical-therapy values. In the intervention group, sedentary behavior decreased beyond desk use, indicating a carry-over effect. MDS-UPDRS II, PDQ-39, sFES, sABC, TUG, 8.5m walking test, activity time, sitting time, hip strength all improved with clinically relevant effect sizes. Conclusion: Postphysical therapy in-home reduction of sedentary behavior was associated with maintenance of physical benefits and additional improvements in mobility, activity time, balance and quality of life
Keywords: Parkinson’s disease, physical therapy, sedentarism, sarcopenia, quality of life
Published in DiRROS: 05.12.2024; Views: 684; Downloads: 392
Full text (1,04 MB)
This document has many files! More... |
6. Changes in the quality of life of early breast cancer patients and comparison with the normative Slovenian populationCvetka Grašič-Kuhar, Tjaša Gortnar Cepeda, Christian Kurzeder, Marcus Vetter, 2023, original scientific article Abstract: We aimed to identify changes in quality of life after breast cancer treatment and compare them withthe normative population data for the Slovenian population.Patients and methods. A prospective, single-group, cohort design was used. A total of 102 early breast cancerpatients treated with chemotherapy at the Institute of Oncology Ljubljana were included. Of those, 71% returned thequestionnaires after one-year post-chemotherapy. The Slovenian versions of the European Organisation for Researchand Treatment of Cancer (EORTC) QLQ C30 and BR23 questionnaires were used. Primary outcomes were a com-parison of global health status/quality of life (GHS) and C30 Summary Score (C30-SumSc) at baseline and one-yearpost-chemotherapy with the normative Slovenian population. The exploratory analysis evaluated the differences insymptoms and functional scales of QLQ C-30 and QLQ BR-23 between baseline and one-year post-chemotherapy.Results. At baseline and one-year post-chemotherapy, C30-SumSc of patients was lower than the predictedC30-SumSc from the normative Slovenian population by 2.6 points (p = 0.04) and 6.5 points (p < 0.001), resp. On thecontrary, GHS was not statistically different from predicted either at baseline or after one year. Exploratory analysisrevealed that one-year post-chemotherapy compared to the beginning of chemotherapy, patients had statisticallysignificantly and clinically meaningful lower scores in body image and cognitive functioning, and increased symptomscores for pain, fatigue, and arm symptoms.Conclusions. The C30-SumSc is reduced one- year post-chemotherapy. Early interventions should be directed to-ward the prevention of the decline of cognitive functioning and body image, and to alleviate fatigue, pain, and armsymptoms.
Keywords: breast cancer, chemotherapy, quality of life
Published in DiRROS: 25.07.2024; Views: 745; Downloads: 316
Full text (461,28 KB) |
7. |
8. |
9. Health-related quality of life in Slovenian patients with colorectal cancer : a single tertiary care center studyJan Grosek, Jerica Novak, Katja Kitek, Alta Bajrić, Ana Majdič, Jurij Aleš Košir, Aleš Tomažič, 2019, original scientific article Keywords: health-related quality of life, colorectal cancer, colorectal surgery, Slovenia
Published in DiRROS: 05.07.2024; Views: 1027; Downloads: 506
Full text (287,71 KB)
This document has many files! More... |
10. Release of growth factors after mechanical and chemical pleurodesis for treatment of malignant pleural effusion : a randomized control studyAljaž Hojski, Maja Leitgeb, Anton Crnjac, 2015, original scientific article Abstract: Growth factors are key inducers of fibrosis but can also mediate inflammatory responses resulting in increasing pleural effusion and acute respiratory distress syndrome. The primary aim of the study was to analyse growth factors release after performing chemical and mechanical pleurodesis in the first 48 hours at the patients with malignant pleural effusion. The secondary endpoints were to evaluate the effectiveness of the both pleurodeses, symptoms release and the quality of life of patients after the treatment. Patients and methods. A prospective randomized study included 36 consecutive female patients with breast carcinoma and malignant pleural effusion in an intention-to-treat analysis. We treated 18 patients by means of thoracoscopic mechanical pleurodesis and 18 patients by chemical pleurodesis with talcum applied over a chest tube. We gathered the pleural fluid and serum samples in the following 48 hours under a dedicated protocol and tested them for growth factors levels. A quality of life and visual analogue pain score surveys were also performed. Results. Median measured serum vascular endothelial growth factor (VEGF) level after chemical pleurodesis was 930.68 pg/ml (95% CI: 388.22-4656.65) and after mechanical pleurodesis 808.54 pg/ml. (95% CI: 463.20-1235.13) (p = 0.103). Median pleural levels of transforming growth factor (TGF) ß1 were higher after performing mechanical pleurodesis (4814.00 pg/ml [95% CI: 2726.51-7292.94]) when compared to those after performing chemical pleurodesis (1976.50 pg/ml [95% CI: 1659.82-5136.26]) (p = 0.078). We observed similar results for fibroblast growth factor (FGF) ß; the serum level was higher after mechanical pleurodesis (30.45 pg/ml [95% CI: 20.40-59.42]), compared to those after chemical pleurodesis (13.39 pg/ml [95% CI: 5.04-74.60]) (p = 0.076). Mechanical pleurodesis was equally effective as chemical pleurodesis in terms of hospital stay, pleural effusion re-accumulation, requiring of additional thoracentesis, median overall survival, but, it shortened the mean thoracic drainage duration (p = 0.030) and resulted in a higher symptoms release and in a better quality of life (p = 0.047). Conclusions. We recorded an increase in serum VEGF levels after chemical pleurodesis, however on the contrary, an increase in the pleural fluid level of TGF%1 and FGF%] after mechanical pleurodesis with respect to compared group. Although the differences did not reach statistical significance, VEGF, TGFß1 and FGFß remain the most interesting parameters for future research. Considering the mechanisms of growth factors action, we conclude that in our study group mechanical pleurodesis might be more efficient in terms of growth factors release, thoracic drainage duration and resulted in a higher symptoms release and in a better quality of life than chemical pleurodesis.
Keywords: malignant pleural effusion, pleurodesis, growth factors, quality of life
Published in DiRROS: 23.04.2024; Views: 1222; Downloads: 807
Full text (663,37 KB)
This document has many files! More... |
