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In PKU, it is suggested that casein glycomacropeptide based protein substitute (GMP) may have physiological advantage when satiety, oxidative stress, renal function and inflammation are considered. Its prebiotic properties may also help gastrointestinal (GI) tolerance. In children with PKU, a randomized/crossover trial comparing phenylalanine-free amino acids (AA) vs GMP as the single source of protein substitute for 12-weeks in each arm was conducted. There was a 4-week wash out period with AA in-between. At baseline and end of each intervention, blood and fecal samples were taken to monitor gut health, oxidative stress, renal function, inflammatory markers and plasma amino acids. Satiety and Pediatric Quality of Life (PedsQL) GI symptoms questionnaires were completed. Usual weekly blood spots for phenylalanine and tyrosine were done. Twelve patients (8 males; aged 4-9y) with PKU participated. GMP improved the following GI symptoms: stomach pain (p = 0.003), heartburn and reflux (p = 0.041) wind and bloating (p = 0.018). With GMP, there was also a trend for less constipation (p = 0.068), discomfort with eating (p = 0.065) and nausea and vomiting (p = 0.087). There were no changes on stool gut health markers (IgA, short chain fatty acids and fecal calprotectin). There were no statistically significant differences for renal, oxidative stress, inflammatory and gut health markers or measures of satiety except for adiponectin (p = 0.028) and total antioxidant capacity (p = 0.049), although the latter was possibly without clinical significance. Mean dried blood spot phenylalanine (Phe) was 114 μmol/L higher with GMP vs AA (p < 0.001). There was no difference in tyrosine levels. In conclusion, GI symptoms statistically significantly improved with GMP versus AA. The Phe content of GMP may present challenges when it is used as the only protein substitute in children with classical PKU with low Phe tolerance., Competing Interests: Declaration of competing interest A.P. received an educational grant from Cambrooke Therapeutics and Biomarin and grants from Vitaflo International, Nutricia, Biomarin, Mevalia, Galen, PIAM, and Applied Pharma Research to attend scientific meetings. This project is also part of A.P.'s PhD, which is funded by Vitaflo International®. A.D. received research funding from Vitaflo International and financial support from Nutricia, Mevalia, and Vitaflo International to attend study days and conferences. C.N. received honoraria from Nutricia and Vitaflo International to attend study days and conferences. J.C.R. was a member of the European Nutritionist Expert Panel (Biomarin) and the Advisory Board for AppliedPharma Research, Vitaflo, Synlogic, Biomarin, and Nutricia and received honoraria as a speaker from APR, Merck Serono, Biomarin, Nutricia, Vitaflo, Cambrooke, PIAM, and Life diet. S.E. (Sharon Evans) received research funding and financial support to attend study days and conferences from both Nutricia and Vitaflo International. C.A. received honoraria from Nutricia and Vitaflo International to attend study days and conferences. A.M. received research funding and honoraria from Arla, Applied Pharma research, Cambrookes, Galen, Nutricia, PTC Pharmaceuticals, Vitaflo International, Metax, PIAM, and Biomarin. S.E. (Simon Eaton) received research funding and financial support to attend study days and conferences from both Nutricia and Vitaflo International and has also received research funding and is co-inventor on patents with Vitaflo international (all unrelated to patients with PKU). S.H. is a consultant for Vitaflo and has also received research funding from said company., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Purpose: To explore the association between medication use-related factors and health-related quality of life (HRQoL) in older hospitalised multimorbid patients with polypharmacy., Methods: This cross-sectional study used the intervention arm data of the OPERAM trial (hospitalised patients ≥ 70 years with polypharmacy). HRQoL was assessed using the visual analogue scale (EQ-VAS) and the EQ-5D index score of the EuroQol questionnaire (EQ-5D-5L). Lower or higher EQ-VAS/EQ-5D was based on the median of the study population. Medication use-related factors included hyperpolypharmacy (≥ 10 medications), anticholinergic and sedative burden, appropriateness of medication (STOPP/START criteria), high-risk medication for hospital (re)admission, medication complexity and adherence. Multivariable logistic regression analysis was used to assess the association between medication use-related factors and HRQoL., Results: A total of 955 patients were included (mean age 79 years, 46% female, median EQ-VAS of 60, median EQ-5D of 0.60). Opioids use was associated with lower EQ-5D and EQ-VAS (aOR EQ-5D: 2.10; 95% CI 1.34-3.32, EQ-VAS: 1.59; 1.11-2.30). Hyperpolypharmacy (aOR 1.37; 1.05-1.80), antibiotics (aOR 1.64; 1.01-2.68) and high medication complexity (aOR 1.53; 1.10-2.15) were associated with lower EQ-VAS. A high anticholinergic and sedative burden (aOR 1.73; 1.11-2.69), presence of multiple prescribing omissions (aOR 1.94; 1.19-3.17) and benzodiazepine use (aOR 2.01; 1.22-3.35) were associated with lower EQ-5D. Especially in hyperpolypharmacy patients, high anticholinergic and sedative burden and medication complexity were associated with a lower HRQoL., Conclusion: Several medication use-related factors are significantly associated with a lower HRQoL in hospitalised older patients. Medication complexity is a novel factor, which should be considered when evaluating medication use of older patients with hyperpolypharmacy., Competing Interests: Declarations. Conflict of interest: On behalf of all authors, the corresponding author states that there is no conflict of interest. Ethical approval: Ethical approval for the OPERAM study protocol was obtained from the local ethics committee at each participating trial site and registered under trial registration number NCT02986425. As this study used the same data, no additional ethical approval was needed. Informed consent: Informed consent was obtained from all individual participants, or a proxy in case of cognitive impairment, included in this study., (© 2024. The Author(s).)

Aim: This study aimed to examine seizure self-efficacy and quality of life of children with epilepsy and to evaluate the relationship between these parameters., Method: The study was conducted between November 2022 and November 2023 in the Pediatric Neurology Outpatient Clinic of a university hospital with 200 children aged 9-14 who met the inclusion criteria and accepted the study. The data were collected using the "Child Descriptive Form," "Seizure Self-Efficacy Scale in Children with Epilepsy," and "KIDSCREEN-27 Health-Related Quality of Life Scale". The data were evaluated using the IBM SPSS Statistics Standard Concurrent User V 26 statistical package program. Number, percentage, mean-standard deviation, median, minimum and maximum values, Cronbach's Alpha coefficient, Shapiro Wilk normality test, Independent Sample t-test, Analysis of Variance (ANOVA), Bonferroni test, Pearson correlation coefficient, linear regression analysis, Durbin-Watson value and normality of residuals Q-Q graphs were used in the evaluation of the data. A value of p < 0.05 was considered statistically significant., Results: It was determined that 53 % of the children participating in the study were male, and the median age was 12 years. The mean total score of the seizure self-efficacy scale was 3.13 ± 1.03, and the mean total score of the health-related quality of life scale was 89.83 ± 15.63. There was a statistically significant positive correlation between the dimension of individual seizure control and total score of health-related quality of life and physical well-being, emotional well-being and social support, and peer dimensions (p < 0.05). A statistically significant positive correlation was determined between the effect of environment on seizure control and health-related quality of life total score, physical well-being, social support, and peer and school environment dimensions (p < 0.05). A statistically significant positive correlation was determined between seizure self-efficacy total score and health-related quality of life total score and physical well-being, emotional well-being, social support, and peer dimensions (p < 0.05)., Conclusion: The study results reveal that high self-efficacy levels of children with epilepsy improve the quality of life of children with epilepsy., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Background: The care processes of cardiac surgery patients are difficult, complex and stressful. Nurses, who have an important role in the care of these patients, may experience burnout or poor quality of work life may be affected because of difficult care processes, and professional difficulties., Aim: This study analysed burnout and quality of work life in cardiac surgery nurses., Study Design: This cross-sectional study was conducted with 68 nurses in the clinic and intensive care unit of a university hospital's cardiovascular surgery department. Clinical nurses care for inpatients in this department, while intensive care nurses care for patients in the intensive care unit. The 'Sociodemographic and Descriptive Characteristics of Nurses Form', 'Maslach Burnout Inventory' and 'Nursing Work Quality of Life Scale' were used to collect the data., Results: The mean score of emotional exhaustion sub-dimension of Maslach Burnout Inventory was 15.25 ± 5.08 (min: 7, max: 27), the mean score of the personal accomplishment sub-dimension was 17.48 ± 4.90 (min: 8, max: 27), and the mean score of depersonalization sub-dimension was 5.60 ± 2.70 (min: 0, max: 13). The mean scores of the emotional exhaustion sub-dimension (t: -2.380, p: .020, risk ratio [RR]: 1.67, confidence interval [CI]: [14.21, 18.82]) and the personal accomplishment sub-dimension (t: -2.604, p: .011, RR: 1.00, CI: [16.08, 19.92]) were higher in intensive care nurses. The mean total score of the nursing quality of work life scale was 107.20 ± 14.60 (min: 72, max: 149). A negative statistically significant relationship was found between the mean scores of emotional exhaustion (r: -0.243, p: .045) and depersonalization sub-dimension (r: -0.325, p: .007) of the Maslach Burnout Scale and the mean total score of the nursing quality of work life scale., Conclusion: In this study, it can be said that cardiac surgery nurses had moderate levels of emotional burnout, personal accomplishment and quality of work life, and low levels of depersonalization. At the same time, it can be seen that intensive care nurses have higher levels of emotional burnout. The increased emotional burnout and depersonalization in nurses decreased the quality of work life., Relevance to Clinical Practice: This study provided an understanding of burnout and quality of work life of cardiac surgery nurses. Strategies can be developed to reduce burnout and improve the quality of the work life of cardiac surgery nurses. Particular attention should be paid to intensive care nurses who experience more burnout on several sub-dimensions. This may be a good approach to improving the quality of patient care., (© 2024 British Association of Critical Care Nurses.)

Purpose: During the coronavirus disease 2019 pandemic, health services offered to individuals diagnosed with mental disorders were interrupted, and use of alternative methods, such as telenursing, came to the forefront., Method: Sixty-four individuals with schizophrenia participated in the current randomized controlled trial that evaluated whether a telenursing intervention affected their drug attitudes, self-efficacy, and quality of life. Pretest, posttest, and follow-up measurements were obtained for experimental and control groups from May to August 2021. Data were collected via a Personal Information Form, Drug Attitude Inventory-10, Self-Efficacy Scale, and World Health Organization Quality of Life Questionnaire-Short Form., Results: Upon comparison of scores obtained by the experimental and control groups in pretest, posttest, and follow-up measurements, it was discerned that telenursing positively affected drug attitudes of participants in the experimental group and enhanced their quality of life. Although there was an increase in self-efficacy levels of the experimental group compared to the control group, the difference was not statistically significant., Conclusion: Telenursing is an effective intervention for the improvement of drug attitudes and quality of life but is not satisfactory for the improvement of self-efficacy in individuals with schizophrenia. [ Journal of Psychosocial Nursing and Mental Health Services, 62 (10), 15-24.].

Purpose: This study aimed to investigate family resilience-defined as the capacity of a family to harness its collective strengths and resources to recover from and adapt to significant adversities or crises effectively-in primary caregivers of children who are deaf and hard of hearing (cDHH) and its association with quality of life, life satisfaction, perceived social support, and loneliness., Method: The study involved 108 primary caregivers of cDHH and 139 primary caregivers of children with normal hearing. Participants underwent psychometric evaluations including the Family Resilience Scale, World Health Organization Quality of Life Assessment-Brief Form, Satisfaction with Life Scale, UCLA Loneliness Scale, and Multidimensional Scale of Perceived Social Support., Results: Significant differences were found in almost every scale and its subdimension between the two groups ( p < .05). Correlation analysis revealed significant correlations between all scale total scores for both groups ( p < .05, .153 < | r | < .737). Quality of life was found to be a significant predictor of family resilience, F (1, 139) = 41.824, R 2 = .279, B = 0.495, t = 6.467, p < .001., Conclusions: Our study highlights the significant impact of having cDHH on caregivers' family resilience, quality of life, life satisfaction, feelings of loneliness, and perceived social support. The results underscore the importance of enhancing caregivers' quality of life as a potential strategy to improve their family resilience. Further research is needed to understand the complex interplay of factors influencing these outcomes.

Objectives: Post-thrombotic syndrome (PTS) is a frequent and important consequence of deep vein thrombosis (DVT) for Behcet`s disease (BD) patients. Although various clinical scales are used to diagnose PTS, Villalta scale was accepted as the standard tool to diagnose and grade the severity of PTS. Poor quality of life (Qol) in the general population was defined for patients with PTS, however, studies in BD patients with PTS is limited. Our aim was to compare the performance of different scales to assess venous disease in BD patients with a history of DVT and to assess the relationship with quality of life. Methods: Patients with BD ( n = 194, M/F:157/37, age:39.1 ± 9.5 years) with a DVT history were investigated. Villalta, VCSS,CEAP scale and SF 36,Veines scales were used to assess venous disease and QoL respectively. Results: Among BD patients, 120 (61.9 %) patients were classified as having PTS by Villalta and of patients 18% had severe PTS. Half of patients with CEAP score <4 were classified as having PTS. Also, 42% of patients with CEAP>4 and almost two third of VCSS classified severe CVD patients was grouped in severe PTS by Villalta scale. VCSS and Villalta classified PTS patients had decreased disease specific and general Qol scores compared to the patients without PTS. Also, severe PTS group (by VCSS) had decreased veines QoL scores and PCS compared to mild/moderate group. Conclusion: BD patients with DVT have a high risk of PTS. Our results show that both Villalta scale and VCSS should be used to assess venous disease BD patients with DVT. However, VCSS classified severity of PTS can show better correlation with venous disease -specific QoL., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Purpose: Uncorrected presbyopia has been shown to reduce Zanzibari women's quality of life. In this mixed-methods study, we examined the subjective wellbeing and self-reported work performance among older women entrepreneurs with functional presbyopia before and shortly after correction, and how poor vision at close distance affected their daily lives., Methods: Women entrepreneurs underwent eye examination to identify those with uncorrected functional presbyopia. Their subjective wellbeing and work performance were both measured in Cantril's ladder. Ready-made glasses were then provided and 30 minutes to an hour later, their subjective wellbeing and work performance was remeasured. Twenty women entrepreneurs were interviewed to understand their lived experience with uncorrected presbyopia., Results: Two-hundred-seventeen women entrepreneurs were included in the survey (mean age 51.6 years, SD 8.64). Women entrepreneurs had a mean subjective wellbeing score of 3.32 (SD 1.10) pre-correction and 5.99 (SD 1.13) post-correction ( p  < .001), and a mean self-rated current work performance score of 4.62 (SD 1.36) before correction and 5.47 (SD 1.35) post-correction ( p  < .001). One-hundred-and-ninety (87.6%) and 121 women entrepreneurs (55.8%) rated their current subjective wellbeing and work performance scores < 5, respectively. Around 1/4 of women entrepreneurs reported having severe difficulties with near tasks., Conclusion: Poor vision at a close distance caused by uncorrected functional presbyopia negatively affected economic, physical and psychosocial aspects of women entrepreneurs' lives. Subjective wellbeing and self-reported work productivity scores improved significantly shortly after presbyopia was corrected. More research with longer follow-up is needed to understand the full benefits of correcting presbyopia.

Previous studies have shown that patients with polycythemia vera (PV) have poor quality of life (QoL). Similarly, it has been shown that survival is influenced by QoL. We aimed to evaluate QoL in 88 Turkish patients with PV. This cross-sectional study included cases diagnosed with PV between January 1995 and August 2019 who attended follow-up studies in the hematology department of a tertiary hospital in Türkiye between August 2019 and July 2020. Beginning in August 2019, subjects who approved study participation applied the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) questionnaire during their routine follow-up-given that they met inclusion/exclusion criteria. Individuals with comorbidities or factors influencing QoL and those with secondary PV-related conditions were excluded. Recorded data included age, sex, history of bleeding, thrombosis, erythrocytosis, leukocytosis, thrombocytosis, obesity or splenomegaly, and cytogenetic mutation profiles such as JAK2, BCR and MPL. We also assessed whether they needed phlebotomy or erythrocyte suspensions. Data concerning comorbidities and medication use were obtained from medical records. The median age of patients was 52 (44-61) years. The majority of participants were male (67.05%). Global health status score was 75 (66.67-83.33). PV patients who had required phlebotomy demonstrated higher social functioning scores (P = .004) and lower scores for loss of appetite (P = .013) and financial difficulties (P = .020) than patients without phlebotomy. PV patients who had suffered from leukocytosis demonstrated lower physical functioning scores compared to those without leukocytosis (P = .001). Patients without JAK2 exon 14 mutations had better physical (P = .016) and cognitive functioning scores (P = .048). It was found that PV patients with splenomegaly demonstrated lower physical functioning (P = .019) and higher appetite loss scores (P = .005) than those without splenomegaly. Higher leucocyte counts were associated with decreased physical functioning and greater fatigue. In conclusion, we demonstrated deterioration of physical and emotional QoL in patients diagnosed with PV. Patients with PV require individualized, patient-specific and integrated approaches in order to minimize symptoms, improve QoL, and increase survival., Competing Interests: The authors have no funding and conflicts of interest to disclose., (Copyright © 2024 the Author(s). Published by Wolters Kluwer Health, Inc.)

Background: Type 1 diabetes is one of the most common chronic diseases in children. Wearable technology (insulin pumps and continuous glucose monitoring devices) that makes diabetes management relatively simple, in addition to education and follow-ups, enhances the quality of life and health of individuals with diabetes., Aims: To evaluate the impact of wearable technology on metabolic management and the quality of life in children and adolescents with type 1 diabetes., Study Design: Systematic review and meta-analysis., Methods: The Preferred Reporting System for Systematic Reviews and Meta-Analyses was used to conduct a systematic review and meta-analysis. PubMed, Web of Science, MEDLINE, Cochrane Library, EBSCO, Ulakbim and Google Scholar were searched in July 2022 and July 2023 using predetermined keywords. The methodological quality of the studies was evaluated using the Joanna Briggs Institute’s Critical Appraisal Checklists for randomized controlled experimental and cross-sectional studies. The meta-analysis method was used to pool the data., Results: Eleven studies published between 2011 and 2022 were included. The total sample size of the included studies was 1,853. The meta-analysis revealed that the decrease in hemoglobin A1C (HbA1c) level in those using wearable technology was statistically significant [mean difference (MD): -0.33, Z = 2.54, p = 0.01]. However, the technology had no effect on the quality of life [standardized mean difference (SMD): 0.44, Z = 1.72, p = 0.09]. The subgroup analyses revealed that the decrease in the HbA1c level occurred in the cross-sectional studies (MD: -0.49, Z = 2.54, p = 0.01) and the 12-19 (MD = 0.59, Z = 4.40, p < 0.001) and 4-18 age groups (MD: -0.31, Z = 2.56, p = 0.01). The subgroup analyses regarding the quality of life revealed that there was no difference according to the research design. However, the quality of life was higher in the wearable technology group than in the control group in the 8-12 and 4-18 age groups (SMD: 1.32, Z = 2.31, p = 0.02 and SMD: 1.00, Z = 5.76, p < 0.001, respectively)., Conclusion: Wearable technology effectively reduces the HbA1c levels in children and adolescents with type 1 diabetes in some age groups. However, it does not affect the quality of life.

Purposed: This study aimed to investigate the effects of exercises by mechanical hippotherapy devices on postural control, balance, mobility, and Quality of Life in patients with stroke., Material and Methods: This was a randomized controlled clinical trial with a total of 30 which were randomly divided into two groups. The participants in the mechanical hippotherapy group (MHG) ( n  = 15) were given exercises with a mechanical hippotherapy device for 15 min in addition to intensive conventional treatments (45 min), while the control group (CG) ( n  = 15) received additional 15 min of postural control and balance exercises for five days per week for four consecutive weeks. The primary outcome was The Berg Balance Scale (BBS). Secondary outcomes were the Fugl-Meyer (FM) Rating Scale, Biodex Balance Measurement (BBM), Trunk Impairment Scale (TIS), the Timed Up and Go Test (TUG) and quality of Life Short Form (SF-36)., Results: In the MHG, FM-Lower extremity score (-6.4, p  = 0.024), FM-Upper extremity score (-12.87, p  = 0.013), TIS (-5.87, p  = 0.04) and TUG (5.73, p  = 0.027) improved statistically significant compared to CG., Conclusion: Exercises using mechanical hippotherapy devices could improve postural control, functional mobility and balance in patients with stroke. It may also improve the quality of life., Clinical Trial Registration Number: NCT03528993IMPLICATIONS FOR REHABILITATIONNCT03528993It was concluded from our results that mechanical hippotherapy could be included in the treatment programs of stroke patients.

We aimed to investigate 12-week-Zumba training effects on physical and psychological parameters, and quality of life (QoL) in postmenopausal women. Forty-two postmenopausal women were randomly allocated to a control group or a Zumba group (ZG). Postural balance, lower limb strength, mood level, and QoL were assessed before and after the 12-week-Zumba training. The ZG showed significantly better balance performances under all conditions such as on firm and foam surfaces with opened and closed eyes as well as improvements in limb strength, mood and QoL compared to their baselines. Thereby, 12-week-Zumba training was effective in improving postural balance, limb strength, mood and, QoL in postmenopausal women.

Purpose: To investigate the effect of perioperative nurse-led counselling intervention on unmet needs, sexual function and quality of life in colorectal cancer patients., Method: This quasi-experimental study included 82 patients who underwent colorectal cancer surgery (control n = 45, intervention n = 37). The telephone-based perioperative nurse-led counselling intervention, which contained implementation, follow-up, and assessment, was applied to start from pre-surgery to post-surgery 3rd month. Data were collected with the Unmet Needs of Cancer Survivors Scale, European Organisation for Treatment and Research of Cancer Quality of Life Scale-30, Colorectal-29, Female Sexual Function Index, and International Index of Erectile Function pre- and post-surgery 3rd-6th months. The control data was collected before the pandemic, and the intervention group throughout the pandemic. The Mann-Whitney-U, Wilcoxon rank test was used., Results: Compared to the control group, intervention group patients reported lower unmet and total needs scores (p = 0.000); higher quality of life (p = 0.000), physical, emotional (p = 0.000), role (p = 0.001), and social functioning scores (p = 0.002); lower fatigue (p = 0.000), constipation (p = 0.034), pain (p = 0.018), nausea-vomiting (p = 0.004), and insomnia scores (p = 0.003); and higher body image, anxiety (p = 0.000) and weight scores (p = 0.003), lower urinary frequency buttock pain (p = 0.000), dysuria (p = 0.001), abdominal pain (p = 0.001), fluctuance (p = 0.000), stool frequency (p = 0.002), and faecal incontinence (p = 0.006) scores at the sixth month (p < 0.05). There were no statistically significant differences between male and female sexual function scores (p > 0.05)., Conclusions: Perioperative nurse-led counselling reduced unmet needs and increased the overall quality of life by decreasing symptom levels but did not affect sexual health outcomes in patients with colorectal cancer surgery., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

Background: According to international guidelines, respiratory rehabilitation (RR) for patients with chronic obstructive pulmonary disease (COPD) is a cornerstone of standard non-pharmacological treatment., Aims: To evaluate feasibility of a home-designed RR program and analyze its medium-term impact on respiratory parameters and quality of life., Methods: This was a prospective study involving 74 COPD patients enrolled in January 2019 and put on inhaled bronchodilator treatment associated with RR at home following a written protocol, for 16 weeks. The comparative statistical analysis highlights the difference before and after RR in terms of clinical and functional respiratory parameters as well as in terms of quality of life (assessed on the short form 36 (SF-36) questionnaire). The comparison involves RR-adherent patients versus non-adherent patients., Results: Mean age was 66.7 ± 8.3 years with a median of 67 years. All patients were smokers, out of which 42 patients (57%) did not quit yet. Forty-one percent of patients were frequent exacerbators. The average COPD assessment test (CAT) score in our patients was 23. The average 6-minutes walk distance (MWD) was 304 m. The BODE index in our patients was 4.11 on average. The RR program was followed by 36 patients (48%). Thirty patients (40%) applied it at least twice a week. RR-adherent patients had an average CAT score decreasing from 23 to 14.5 ( P = 0.011). Their average 6-MWD was 444.6 m by the end of the study, which would be 64.2% of the calculated theoretical value. The average FEV1 increase after RR was 283 mL. The majority (69%) of RR-adherent patients were ranked as quartile 1; BODE index ≤2. The average scores of physical, psycho-social, and general dimensions assessed on the SF-36 questionnaire improved in RR-adherent patients., Conclusions: RR is a key non-pharmacological treatment for COPD. Its interest originates from its multidisciplinary nature, hence its effectiveness in several respiratory parameters. Our study reflects the feasibility of home-designed protocols in the absence of contraindications. We highlight also the positive impact on quality of life after RR at home.

Background: Quality care for adolescents and young adults with chronic illnesses has been under-explored in the United Arab Emirates (UAE) and internationally, especially from patients' perspectives. Most available international studies focused on quality of life and the transition to adulthood rather than service quality., Aim: This research assesses care quality for adolescents with chronic illnesses in the UAE, aiming to understand their perspectives, appraise current practices, and identify service gaps., Methods: A cross-sectional survey employed a validated questionnaire examining 33 essential care components. Participants comprised 576 adolescents and young adults with chronic conditions from five UAE Emirates., Results: Participant's reports indicated that none of the 33 care elements were received consistently. Most participants (80.6%) reported crucial care aspects were absent, and across most investigated items, 19.4%-46.5% of participants reported receiving the services they were supposed to receive only some or many of the times, indicating significant areas for improvement., Conclusions: Findings demonstrate significant care quality gaps for UAE's adolescents and young adults with chronic illnesses. These may critically affect their ability to manage their conditions and ensure holistic growth. These insights can guide healthcare enhancements tailored to this demographic., Practice Implications: There is an urgency for enhanced patient-centered care in UAE healthcare, emphasizing clinicians' roles in supporting adolescents with chronic illnesses, especially during transitions. Healthcare managers should prioritize standardized care policies, improved communication, and training that emphasizes consistent patient feedback and transition readiness. Further research into care gaps and tailored interventions within the region's distinct sociocultural setting is essential., Competing Interests: Declaration of Competing Interest No conflict of interest has been declared by the authors., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Little is known about the quality of adherence to glucocorticoid replacement therapy in patients with Addison disease (AD). The aim of this study was to evaluate the quality of glucocorticoid treatment adherence in patients with AD and to assess its association with patients' disease knowledge and quality of life., Methods: This is a cross-sectional study including 58 patients with AD. The Girerd questionnaire was used to assess the quality of adherence to glucocorticoid replacement therapy. A questionnaire was specially designed to assess patients' disease knowledge. The AddiQol questionnaire, specific to AD, was used to assess the patients' quality of life. Patients were considered non-adherent if they gave three or fewer than three negative answers to the Girerd questionnaire (score≤3/6)., Results: The mean age of the patients was 48.4±13.3 years (39 women and 19 men). Twenty-seven patients (46%) were non-adherent to glucocorticoid replacement therapy. An age below 48 years, poor adherence to comorbidity treatments, baseline cortisolemia at diagnosis>5μg/dl, history of adrenal crisis, poor knowledge about the disease, BMI<26.7kg/m 2 , waist circumference<90cm, low systolic blood pressure, fasting blood glucose<0.9g/l, and triglyceride<1g/l were the factors independently associated with non-adherence (respectively ORa [CI 95%]=4.8 [2.8-10.7], 5.0 [3.0-12.2], 2.3 [1.2-6.2], 4.1 [2.0-8.3], 3.9 [1.2-7.2], 3.9 [1.1-6.9], 1.8 [1.1-2.9], 4.8 [2.6-8.2], 2.5 [1.1-5.3], and 2.2 [1.1-5.1]). There was a positive correlation between the disease knowledge questionnaire score and the Girerd score (p=0.02, r=0.31). There was a positive correlation between the AddiQoL score and the Girerd score (p=0.01, r=0.32)., Conclusion: Non-adherence to glucocorticoid replacement therapy was common in patients with AD and was associated with more frequent adrenal crisis and poorer quality of life. The quality of treatment adherence was correlated with patients' disease knowledge. Therapeutic education is essential to reduce the frequency of non-adherence, especially among young patients., (Copyright © 2023 SEEN and SED. Published by Elsevier España, S.L.U. All rights reserved.)

Objective: There are some studies regarding the potential effects of temporomandibular disorders (TMD) on food intake and eating habits, however the comparison of nutritional intakes and status of individuals with and without TMD have not been adequately reported. Thus, the study aimed to assess the dietary intakes of individuals with TMD, and investigate if there is a difference in nutritional intakes between healthy individuals with and without TMD., Methods: Individuals were grouped as 'study group (with TMD)' versus 'control group (no TMD)' according to Fonseca Anamnestic Index. The Oral Health Impact Profile-14 (OHIP-14) was used to assess oral health-related quality of life. Chewing function was evaluated with the Test of Masticating and Swallowing Solids (TOMASS). A 24-h dietary recall method was used to measure daily dietary intakes of the participants, and daily energy, macro- and micronutrient intakes were calculated. In addition, all drinks and foods in dietary records were classified under a specific modification level as 'Liquid-blenderized', 'Minced-moist & soft' and 'Easy-to chew & regular solid foods'., Results: The participants in the study group (30 participants) had higher OHIP-14 score (p < .01) than control group (30 participants). According to TOMASS, number of bites (p = .003) and total time (p = .007) were both higher in the study group than control group. There was no difference in the number of chewing cycles (p = .100) and number of swallowing (p = .764) between groups. No difference was detected between groups in terms of energy, protein, carbohydrate and fat intake. There was no significant difference between groups in mean percentage of energy and macronutrient intakes from modified and regular food textures (p > .05)., Conclusion: This study showed that there was no difference between individuals with and without TMD in terms of dietary intakes. The study results suggest that nutritional status of individuals with TMD is similar with healthy individuals without TMD., (© 2023 John Wiley & Sons Ltd.)

Introduction: We evaluated the effect of intradialytic concurrent (resistance-endurance) training combined with melatonin (MEL) supplementation on functional capacity, muscle strength, postural balance, and quality of life (QoL) in hemodialysis (HD) patients., Methods: Thirty-three HD patients were randomized into three groups: Exercise (EX)-MEL (n = 11); EX-Placebo (PLA) (n = 11) and Control (C)-PLA (n = 11). Participants included in the EX-MEL and EX-PLA groups were submitted to concurrent training for 12 weeks., Results: EX-MEL and EX-PLA improved functional capacity, muscle strength, QoL, and postural balance parameters in eyes open and eyes closed conditions. Parameters of postural balance in the dual task condition were improved only in EX-MEL. EX-MEL induced better results in some domains of QoL compared with EX-PLA., Conclusion: Intradialytic concurrent training induced beneficial effects on physical function, muscle strength, postural balance, and QoL in HD patients. MEL supplementation combined with intradialytic exercise lead to better improvements in postural balance and QoL., (© 2022 International Society for Apheresis and Japanese Society for Apheresis.)

Background: Premenstrual symptoms at reproductive age resemble menopausal symptoms and have symptomatic commonalities. We hypothesized that women with previous premenstrual syndrome may be more prone to develop menopausal symptoms and aimed to investigate the association of menopausal symptoms and menopausal quality of life with premenstrual symptoms., Methods: The study included 120 postmenopausal women. We evaluated the current menopausal symptoms with menopause rating scale (MRS) and quality of life with menopause-specific quality of life scale (MSQoL), previous premenstrual symptoms with premenstrual syndrome scale (PMSS) retrospectively and compared the associations statistically., Results: According to retrospective PMSS, participants were divided into two groups; with and without premenstrual syndrome (PMS). PMS group included 29 (24.2%) participants and 91 (75.8%) participants were in group without PMS. Sociodemographic characteristics of groups were similar. Somatic and psychological symptoms were higher in MRS of PMS group. Evaluating the MSQoL; psychosocial and physical symptoms were impaired in the PMS group. Vasomotor, urogenital and sexual symptoms were similar in both groups., Conclusion: Premenstrual and menopausal symptoms were related in terms of somatic, and psychosocial symptoms but not in vasomotor, urogenital, and sexual symptoms. It seems that women with previous premenstrual symptoms are more likely to develop menopausal symptoms in some ways. However, a prospective longitudinal study may be needed for more conclusive results., (© 2023 Kamuzu University of Health Sciences.)

Introduction: Successful approaches to managing physical and psychosocial impacts on quality of life (QoL) of people with ankylosing spondylitis (AS) are grounded in their sociocultural and religious perspectives. The purpose of this study was to assess the QoL of Muslim patients with AS in Türkiye., Methodology: This descriptive, cross-sectional study was conducted in 101 patients. The data were collected using a Demographic Form and the Ankylosing Spondylitis Quality of Life Index., Results: It was determined that the QoL of those who use medication regularly and whose physical activity, psychological state, social and sexual life are affected is statistically significantly worse ( p < .05)., Discussion: Results can provide better understanding of the QoL of Muslim patients and physical, social, and psychological influences of AS on QoL in this population. These results may have substantial impact on designing interventions to improve the QoL of Muslim patients with AS and the factors affecting it.

This study evaluated the impact of COVID-19 and other factors on the health-related quality of life (HRQoL) of Saudi patients during infection and after recovery using the EQ-5D-5L and EQ-VAS instruments. An observational prospective study was conducted in November 2022, during which 389 COVID-19 patients were surveyed during their visit to a medical center. Two weeks after their recovery, they were contacted again to re-evaluate their HRQoL (192 patients either refused to participate or withdrew). The mean of the EQ-5D-5L index and EQ-VAS scores significantly increased from (0.69 ± 0.29 and 63.16 ± 24.9) during infection to (0.92 ± 0.14 and 86.96 ± 15.3) after recovery. Specifically, COVID-19 patients experienced improvement of several HRQoL dimensions post recovery, such as better mobility, enhanced self-care, returning to usual activities, less pain/discomfort, and alleviated anxiety/depression. Multiple linear regression analyses showed that having a normal weight, being employed, not being anemic, and previously taking the BCG vaccine were positively associated with a greater change in the HRQoL. An interaction between being asthmatic and taking the influenza vaccine positively predicted a lower change in the HRQoL. Having a normal weight positively predicted a greater change in the perceived health state after recovery. Increasing the consumption of natural supplements (honey and curcuma) did not improve the HRQoL or the perceived health state. Based on these findings, COVID-19 mildly impacted the HRQoL of Saudis with varying effects depending on some socio-demographic/clinical characteristics of the patients.

Background: Previous studies on medication therapy management services, e.g. medication reconciliation and medication review, do not show consistent improvements in patient's health-related quality of life. However, these services can reduce adverse drug events., Aim: To evaluate the correlation between health-related quality of life and adverse events/adverse drug events reported by patients., Method: Older patients (≥ 65 years) with polypharmacy (≥ 5 medicines) admitted to orthopaedic or surgical wards were included. Patients were contacted post-discharge to evaluate patient-reported adverse events, health-related quality of life using the EuroQol questionnaire and self-perceived health status on a 5-point Likert scale. The outcomes were the correlation between health-related quality of life and the number of adverse events/adverse drug events, and potential predictors for these events. Spearman correlation and Poisson regression were used for data analysis., Results: 102 patients were included. The correlation between health-related quality of life and adverse events was weak but significant (Spearman correlation coefficient: - 0.328, p = 0.001). No correlation was found for adverse drug events (- 0.064, p = 0.521). Self-perceived health status was a predictor for adverse events, not for adverse drug events. Health-related quality of life was neither a predictor for adverse events, nor for adverse drug events., Conclusion: The correlation between the number of patient-reported adverse events, adverse drug events and health-related quality of life measured by the EuroQol was weak. There is a need for a questionnaire that includes the impact of medication use and is sensitive to outcomes that are affected by medication therapy management services., (© 2022. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

Purpose: The study aimed to develop a web-based education program among cancer patients undergoing treatment with systemic chemotherapy and to evaluate the efficacy of the program on symptom control, quality of life, self-efficacy, and depression., Methods: A web-based education program was prepared in line with patient needs, evidence-based guidelines, and expert opinions and tested with 10 cancer patients. The single-blind, randomized controlled study was conducted at a medical oncology unit of a university hospital. Pretests were applied to 60 cancer patients undergoing treatment with systemic chemotherapy, and the patients (intervention: 30, control: 30) were randomized. The intervention group used a web-based education program for 3 months, and they were allowed to communicate with researchers 24/7 via the website. The efficacy of a web-based education program at baseline and after 12 weeks was evaluated. The CONSORT 2010 guideline was performed., Results: In the first phase results of the study, it was found that most of the patients with cancer wanted to receive education about symptom management and the side effects of the treatment. Expert opinions on the developed website were found to be compatible with each other (Kendall's Wa = 0.233, p = 0.008). According to the randomized controlled study results, patients who received web-based education reported significantly fewer symptoms (p = 0.026) and better quality of life (p = 0.001), but there was no statistically significant difference in the self-efficacy and depression levels during the 3-month follow-up period (p˃0.05). The most frequently visited links in the web-based education program by the patients with cancer were the management of chemotherapy-related symptoms (62.6%)., Conclusion: A web-based education program was found to be efficacy in remote symptom management and improving the quality of life of cancer patients., Trial Registration: www., Clinicaltrials: gov , NCT05076916 (October 12, 2021, retrospectively registered)., (© 2022. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Objective: This study has aimed to investigate the validity and reliability of the Borderline Personality Features Scale for Children-Short Form (BPFSC-SF-TR) in Turkish adolescents., Method: The study was carried out with adolescents between the ages of 12-18 from clinical (N=168) and community (N=181) backgrounds. All participants were asked to complete the BPFSC-SF-TR, the Personality Belief Questionaire - Short Form (PBQ-SF), the Brief Symptom Inventory (BSI) and the Personality Inventory for DSM-5- Short Form (PID-5-SF) scales. Also, the Kiddie Schedule for Affective Disorders and Schizophrenia for School-Age Children-Present and Lifetime Version-Turkish Version (K-SADS-PL-TR) was administered to the participants in the clinical group and their parents were asked to complete the Pediatric Quality of Life Inventory (PEDsQL). Test-retest correlations and the Cronbach's α coefficients were calculated., Results: BPFSC-SF-TR scores of both groups of participants positively correlated with the PBQ-BF borderline subscale, the PID-5-SF borderline related facets and the BSI scores, and negatively correlated with the PedsQL in the clinical group. Furthermore, the clinical group had higher total BPFSC-SF-TR scores than the community group, and their scores positively correlated with the number of diagnoses and psychiatric symptoms determined by using the KSADS-PL-TR. Exploratory and multi-group confirmatory factor analyses of the data of both groups supported a single factor structure. The Cronbach's α of the scale was 0.84 in the clinical group, and 0.79 in the community group. The test-retest reliability correlation coefficient of the scale was 0.71., Conclusion: The BPFSC-SF-TR is a valid and reliable tool for Turkish adolescents.

Background: Impaired health-related quality of life (HRQoL) is a common problem in pulmonary arterial hypertension (PAH), but there is limited data on HRQoL in children with PAH. We aimed to investigate the QoL, determine the potential risk factors for poor HRQoL in children with PAH, and assess the depression and anxiety of their families., Methods: We performed a prospective cross-sectional study of children with PAH, healthy peers, and their parents. HRQoL was measured by the self-reported and age-adapted KINDL questionnaire. Beck Depression Inventory (BDI) and hospital anxiety and depression scale (HADS) were used to assess the depression and anxiety of parents., Results: Children with PAH had statistically lower total HRQoL scores than healthy peers (p < 0.001). There was no correlation between HRQoL and duration of disease, World Health Organization functional class, pro-B-type natriuretic peptide, 6-min walk test, and combined or single treatment. BDI and HADS scores were significantly higher in the parents of patients (p < 0.001, p = 0.023, p < 0.001, respectively). There was a negative correlation between HRQoL and BDI in patients (p = 0.016), while there was no significant correlation between HRQoL and HADS (p > 0.05)., Conclusion: We demonstrated impairment of HRQoL of children with PAH. In addition, there was a correlation between the depression of the families and the QoL of the children., (© 2021 Wiley Periodicals LLC.)

Objective: To report the health-related quality of life (HRQoL) after robot-assisted radical cystectomy and intracorporeal urinary diversion (iRARC), and to identify factors impacting on return to baseline., Patients and Methods: Consecutive patients undergoing iRARC between January 2016 and December 2017 completed the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire 30-item core (EORTC-QLQ-C30) and EORTC-QLQ-Muscle-Invasive Bladder Cancer Module (EORTC-QLQ-BLM30) questionnaires before surgery and had a minimum of 12 months follow-up postoperatively., Results: A total of 76 patients met the inclusion criteria at 12 months. Neobladder (NB) cases (n = 24) were younger (57.0 vs 71.0 years, P < 0.001) and fitter than ileal conduit (IC) cases (n = 52), and had higher physical (100.0 vs 93.3, P = 0.039) and sexual functioning (66.7 vs 50.0, P = 0.013) scores at baseline. Longitudinal analysis of the EORTC-QLQ-C30 showed that physical (NB: 93.3 vs 100.0, P = 0.020; IC: 80.0 vs 93.3, P < 0.001) and role functioning scores (NB: 83.3 vs 100.0, P = 0.010; IC: 83.3 vs 100.0, P = 0.017) decreased and fatigue score (NB: 22.2 vs 11.1, P = 0.026; IC: 33.3 vs 22.2, P = 0.008) increased at 3 months in both diversion groups. Scores returned to baseline at 6 months except physical functioning score in IC patients that remained below baseline until 12 months (86.7 vs 93.3, P = 0.012). The global HRQoL score did not show significant change postoperatively in both groups. A major 90-day Clavien-Dindo complication was a significant predictor (odds ratio [OR] 0.11, 95% confidence interval [CI] 0.02-0.62; P = 0.012) of deteriorated global HRQoL score at 3 months, while occurrence of a late complication (OR 0.14, 95% CI 0.03-0.65; P = 0.013) was a predictor of deteriorated global HRQoL score at 12 months. Longitudinal analysis of the EORTC-QLQ-BLM30 showed that urinary problems (NB: 14.3 vs 38.3, P < 0.001; IC: 5.6 vs 19.1, P < 0.001) and future perspective (NB: 33.3 vs 44.4, P = 0.004; IC: 22.2 vs 44.4, P < 0.001) scores were better than baseline at 3 months. Sexual function deteriorated significantly at 3 months (NB: 8.3 vs 66.7, P < 0.001; IC: 4.2 vs 50.0, P < 0.001) and then showed improvement at 12 months but was still below baseline (NB: 33.3 vs 66.7, P = 0.001; IC: 25.0 vs 50.0, P < 0.001). Involvement in penile rehabilitation was shown to be a significant predictor (β 18.62, 95% CI 6.06-30.45; P = 0.005) of higher sexual function score at 12 months., Conclusion: While most functional domains and symptoms scales recover to or exceed baseline within 6 months of iRARC, physical function remains below baseline in IC patients up to 12 months. Global HRQoL is preserved for both types of urinary diversion; however, postoperative complications seem to be the main driving factor for global HRQoL. Sexual function is adversely affected after iRARC suggesting that structured rehabilitation of sexual function should be an integral part of the RC pathway., (© 2021 The Authors BJU International © 2021 BJU International Published by John Wiley & Sons Ltd.)

Objective: This study aimed to determine the validity and reliability of the atrial fibrillation effect on quality of life (AFEQT) questionnaire and evaluate the quality of life of patients with atrial fibrillation (AF)., Methods: This was a methodological study that included 204 patients with AF over the age of 18 who participated voluntarily in the study. Data were collected using a structured questionnaire, the AFEQT questionnaire, and the University of Toronto atrial fibrillation severity scale (AFSS). The AFEQT questionnaire was translated into Turkish and presented to an expert panel, after which a pilot study was carried out with 20 patients for linguistic equivalence and cultural adaptation. The reliability of the AFEQT questionnaire was determined using Cronbach's alpha and item-total correlation coefficient analyses., Results: The Cronbach's alpha value was found to be 0.91, and the scale and subscale item-total correlation values ranged from 0.36 to 0.91. The validity of the AFEQT questionnaire was determined by construct, concurrent, and discriminant validity analyses. The factor loads of the AFEQT questionnaire ranged from 0.37 to 0.94 and the ratio was χ2/df=2.43 in the confirmatory factor analysis. A negative and highly significant relationship was found in concurrent validity between the AFEQT questionnaire and the AFSS. When AF risk factors were compared with the AFEQT questionnaire, it showed that AF-related risk factors negatively affected patients' quality of life. The AFEQT questionnaire was suitable in terms of discriminant validity., Conclusion: The Turkish AFEQT questionnaire was found to be reliable and valid; therefore, we recommend its use to evaluate the quality of life of patients with AF.

Objective: The aim of this study is to examine the quality of life (QOL) outcomes of patients undergoing different uveal melanoma (UM) treatments and to appraise the literature on the topic., Design and Participants: A systematic review was conducted to address the study objective. Patients undergoing UM treatment with or without metastasis were eligible for inclusion in this review., Methods: A literature search was performed using National Library of Medicine (PubMed), Embase, Ovid online, and Cochrane Central Register of Controlled Trials databases. We included all English, original retrospective or prospective studies published between January 1998 to September 2019 in which the primary outcome was the QOL of patients with treated UM., Results: Our search strategy yielded 101 articles. Of these, 18 articles met all our inclusion criteria. The majority of included articles (61%) are cross-sectional studies. On average, each study employed 2 different QOL assessment tools. Overall, physical functioning and mental well-being are impaired in patients with UM after treatment compared with the general population. The severity of the impairment decreases as early as 3 months post-treatment; 8 of 12 studies comparing treatment options reported no statistical difference in physical functioning between treatments; 4 of 12 studies reported better visual function with radiation therapy compared with enucleation, 2 of which described no difference between the 2 options at long-term. Anxiety is more prevalent than depression, and both decrease to less than 10% at 1-year follow-up., Conclusions: Overall, there is no significant difference in long-term QOL in patients with UM from different treatment groups past 1-year follow-up. This work underscores the need for and importance of developing a standardized, complete assessment tool tailored to the challenges inherent to the diagnosis of UM., (Copyright © 2020 Canadian Ophthalmological Society. Published by Elsevier Inc. All rights reserved.)

Objectives: Cochlear implantation is a widely accepted and effective surgical method used to treat severe hearing loss. What's more, it affects the lives of both cochlear implanted children and their parents. This study aims to compare cochlear-implanted children (CIC) and their parents with healthy counterparts and their parents in terms of the quality of life (QOL) and parental care burden (CB)., Methods: This study was conducted between February and December 2018 in Turkey after receiving approval from the ethics committee. The Case Group included 34 children between 3 and 7 years of age, who received a CI due to bilateral prelingual sensorineural hearing loss and were using it for at least 1 year, and their parents. The Control Group consisted of 68 healthy children and their parents. The data were collected using disease and age-specific quality of life scales and burden interview. Normally distributed variables were analysed using parametric tests while non-normally distributed variables were analysed using nonparametric tests. The odds ratio (OR) and confidence interval (95%) were also calculated. Results were evaluated at significance level of p < 0.05., Results: The mean age of the children and their parents in both Case and Control Groups was 63.9 months and 33.8 years, and 61.3 months and 36.6 years, respectively. There was a positive correlation between PPQ social relationship subscale and KINDL subscale scores in CIC (p < 0.05). The Case Group obtained lower mean scores from the subscales of KINDL and WHOQOL-BREF (p < 0.001, p < 0.01). The ZBI mean scores of the parents in Case and Control Groups were 43.18 and 27.54, respectively (p = 0.000)., Conclusion: It was determined that the QOL of the Case Group was lower than QOL of the Control Group, while the CB of the Case Group was higher than CB of the Control Group., (Copyright © 2020 Elsevier B.V. All rights reserved.)

Aim: The aim of this study is to evaluate the clinical parameters, acute-phase reactants, side effects, genetic mutations among colchicine-resistant Familial Mediterranean fever (FMF) patients who received anti-interleukin-1 (anti-IL-1) treatment. We also evaluate the quality of life and school attendance among colchicine-resistant FMF patients, in relation to treatment with anti-IL-1., Introduction: Familial Mediterranean fever is the most common inherited autoinflammatory disorder. Although the main treatment of FMF is colchicine, a small group of patients are resistant to colchicine treatment. Anti-IL-1 treatment is promising in colchicine-resistant patients due to excessive IL-1β production in pathogenesis. The aim of this study is to evaluate the quality of life and school attendance rates among colchicine-resistant FMF patients after anti-IL-1 treatment., Methods: This is a single center retrospective study of 25 pediatric colchicine-resistant FMF patients treated with anti-IL-1 treatment. Autoinflammatory Disease Activity Index (AIDAI) was used for disease activity assessment. School attendance rates were evaluated before and after treatment., Results: There were 25 patients with FMF (11 M/14 F) who were treated with anakinra or canakinumab for various indications (colchicine-resistant recurrent febrile attacks in 20, colchicine-related side effects in 2, subclinical inflammation in 3 patients). Only 3 patients developed side effects with anakinra (2 headache, 1 urticarial rash). There was a significant decrease in the frequency of attacks, acute-phase reactants (erythrocyte sedimentation rate and C-reactive protein), AIDAI and physician's and patient's global assessment scores and improvement in school attendance rates. At the last follow-up, all patients were in remission, and only 3 had subclinical inflammation., Conclusion: Anti-IL-1 treatment is quite effective in children with colchicine-resistant FMF patients, proven with improved AIDAI scores and school attendance rates. In the long term by lowering disease activation even development of amyloidosis may be prevented., (© 2020 Asia Pacific League of Associations for Rheumatology and John Wiley & Sons Australia, Ltd.)

Purpose: The latissimus dorsi muscle has long been used in breast cancer (BC) patients for reconstruction. This study aimed to compare early stage BC patients who had partial mastectomy (PM) with mini latissimus dorsi flap (MLDF) and subcutaneous mastectomy with implant (MI) with respect to quality of life (QoL), cosmetic outcome (CO), and survival rates., Patients and Methods: The data of patients who underwent PM + MLDF (Group 1) and M + I (Group 2) between January 2010 and January 2018 were evaluated. Both groups were compared in terms of demographics, clinical and pathological characteristics, surgical morbidity, survival, quality of life, and cosmetic results. The EORTC-QLQ C30 and EORTC-QLO BR23 questionnaires and the Japanese Breast Cancer Society (JBCS) Cosmetic Evaluation Scale were used to assess the quality of life and the cosmetic outcome, respectively., Results: A total of 317 patients were included in the study, 242 (76.3%) of them in group 1 and 75 (23.6%) of them in group 2. Median follow-up time was 56 (14-116) months. There were no differences identified between the groups in terms of tumor histology, hormonal receptors and HER-2 positivity, surgical morbidity, and 5-year overall and disease-free survival. Group 2 patients were significantly younger than group 1 (p = 0.003). The multifocality/multicentricity rate was higher in group 2 (p ≤ 0.001), whereas tumor size (p = 0.009), body mass index (BMI, p = 0.006), histological grade (p ≤ 0.001), lymph node positivity (p = 0.002), axillary lymph node dissection (ALND) rate (p = 0.005), and presence of lympho-vascular invasion (LVI, p = 0.013) were significantly higher in group 1. When the quality of life was assessed by using the EORTC QLQ C30 and BR23 questionnaires, it was seen that the body image perception (p < 0.001) and nausea/vomiting score (p = 0.024) were significantly better in PM + MLDF group whereas physical function score was significantly better in M + I group (p = 0.012). When both groups were examined in terms of cosmesis with JBCS Cosmetic Evaluation Scale, good cosmetic evaluation score was significantly higher in patients in MLDF group (p = 0.01)., Discussion: The results of this study indicate that in comparison to M + I procedure, the PM + MLDF procedure provides significantly superior results in terms of body image and cosmetic result with similar morbidity and oncologic outcomes. In selected patients with small breasts and a high tumor/breast ratio, PM + MLDF may be an alternative to subcutaneous mastectomy and implant.

The study was conducted to evaluate the meaning of life and self-care agency in nursing care given to chronic obstructive pulmonary patients according to the health promotion model. The sample of the study was determined by power analysis and 40 COPD patients were assigned to each group by simple random sampling method. Descriptive Information Form, Life Attitude Profile and Self-care Agency Scale were used to obtain the data. Nursing care was applied by the researcher 3 times in every 2 weeks according to the health promotion model in the houses of the patients in the experimental groups. Number, percentage, mean, standard deviation, dependent samples t-test, independent samples t-test, chi-square and ANOVA were used to analyze the data. It was determined that while posttest mean score of the patients in the Experimental group 1 for Self-care agency scale was 112.70 ± 29.0; their posttest mean score for Life Attitude Profile was 156.37 ± 13.5. Posttest mean score of the patients in the Control group 1 for Self-care agency scale was 81.35 ± 17.7; whereas, their posttest mean score for Life Attitude Profile was 120.50 ± 31.9. The difference between the posttest mean scores of the groups was statistically significant (p < 0.05). The care applied to the patients with COPD according to health promotion model was found to increase self-care agency and meaning of life of the patients., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Purpose: The aims of the study were to compare the risk of complications and the quality of life in patients with corticotrope deficiency, who fasted during Ramadan. Both hydrocortisone and prednisolone were compared as treatments., Methods: A randomized double-blind crossover clinical trial conducted in the department of Endocrinology of the University Hospital la Rabta in Tunis, during Ramadan 2018, on 53 patients with known corticotrope deficiency treated with hydrocortisone 20 mg per day and who were willing to fast during Ramadan. Patients were randomized into two groups; AB that received hydrocortisone twice daily for 14 days then prednisolone once daily with a placebo for 14 days and group BA that received the two treatments in the reverse order. Patients had to complete a daily follow-up sheet about their eating and sleeping habits, the occurrence of complications and blood glucose monitoring and also to respond to the AddiQoL questionnaire at the end of each treatment period., Results: Fifty patients' data were analyzed; 29 men, mean age: 42.4 ± 13.3 years, mean duration of the disease: 8.1 ± 7.6 years. The frequency of complications, mean blood glucose levels and the quality of life did not differ on hydrocortisone compared to prednisolone after adjustment for the sequence of the treatment., Conclusions: the risks of Ramadan fasting in patients with corticotrope deficiency were the same on hydrocortisone or prednisolone.

Objective: The present study aims to describe the efficacy and safety of onabotulinum toxin A (BonT-A) with evaluation of treatment satisfaction and impact on quality of life in chronic migraine (CM) patients in real life., Methods: This study was conducted in CM patients who were treated with BoNT-A with 12 months of follow-up. Data about outcome, adverse events, and patients' pre- and post-treatment status including health-related quality of life data were analyzed. Health-related quality of life scores were measured at baseline and months 6 and 12 after the beginning of BoNT-A administration., Results: Of 42 enrolled patients, 30 were included in the analysis. At 12 months, all patients showed a reduction in number of headaches and analgesic use per month and none reported adverse events. After BoNT-A supplementation, health-related quality-of-life scores improved significantly. There was a direct association between health-related quality of life with reduction of headache days at the end of study., Conclusion: This study confirms that BoNT-A treatment is effective on CM and improves the functional well-being and quality of life of patients., (© 2020 S. Karger AG, Basel.)

Purpose: Pulmonary rehabilitation (PR) is advocated in the pre- and post-lung transplantation (LTx) periods. However, there is limited literature on the benefit of PR post-LTx. The aim of this study was to investigate the efficacy of an outpatient, multidisciplinary, comprehensive PR program in bilateral LTx recipients in the early period after LTx., Method: Twenty-three LTx recipients were referred to the PR center. Change in incremental and endurance shuttle walk tests, hand and quadriceps strength, respiratory muscle strength (maximum inspiratory/expiratory pressure), dyspnea (Medical Research Council score), quality of life (St George's Respiratory Questionnaire, Chronic Respiratory Questionnaire), and psychological status (Hospital Anxiety Depression Scale) were compared pre- and post-PR., Results: Seventeen of 23 (74%) recipients completed PR, comprising 15 male and 2 female patients whose median age was 51 yr. The initiation of the program was 75 ± 15 d after LTx. The incremental shuttle walk test distance was predicted as 23% before PR and it increased to 36% after PR (P < .001); the endurance shuttle walk test distance also increased (P < .01). Significant improvement was seen in upper and lower extremity strength, and St George's Respiratory Questionnaire and Chronic Respiratory Questionnaire scores and Hospital Anxiety Depression Scale scores reflected less anxiety and depressive symptoms. Furthermore, body mass and fat-free mass indices, maximum inspiratory pressure, and maximum expiratory pressure improved significantly. There was no significant change in forced expiratory volume in the first second of expiration, forced vital capacity, or Medical Research Council scores., Conclusion: This study demonstrated that patients who attended PR within 3 mo of bilateral LTx showed improvements in exercise capacity, respiratory muscle strength, quality of life, body composition, and psychological status.

Introduction: The goals of chronic obstructive pulmonary disease (COPD) treatment are to relieve dyspnea, increase exercise capacity, and improve quality of life. The relation of exercise capacity, dyspnea level, and quality of life with long-term mortality is unclear. Aim of the study was to assess the effect of exercise capacity, dyspnea level and quality of life on long-term mortality risk in patients with COPD., Materials and Methods: Dyspnea level was assessed using the modified Medical Research Council (mMRC), Borg and Baseline Dyspnea Index (BDI) and Body Obstruction Dyspnea Exercise (BODE), health-related quality of life with St. George's Respiratory Questionnaire, and exercise capacity with the 6-minute walking test (6MWT) and cardiopulmonary exercise test. At the end of 8-year follow-up period, the relation between these tests and mortality was examined., Result: A total of 42 patients with stable COPD were included in the study. Sixteen patients died during the approximately 8-year follow-up period. Univariate analysis revealed that VO2 peak [HR: 1.845; CI: (1.336-2.55); p<0.001], BODE index [HR: 0.787; CI: (0.703-0.880); p<0.001], and SGRQ [HR: 1.073; CI: (1.028-1.119); p= 0.001] were significantly correlated to mortality risk. Multivariate Cox regression analysis revealed VO2 peak [HR: 1.031; CI: (0.683-1.120); p= 0.01] as the single significant predictor of mortality. VO2 peak less than 22.5 had a sensitivity of 82%, specificity of 80%, and area under the curve of 0.142 [95% CI: (0.027-0.257); p< 0.001] for mortality risk with ROC analysis., Conclusions: Cardiopulmonary disturbances during maximal exercise may be an important indicator of mortality risk.

Background: Cancer is a chronic disease and a major health problem. It affects both patients and their family caregivers multidimensionally. The family caregivers may be affected by not only the disease process but also hospital policies, economic difficulties, accessibility and communication of health care service and can be in need of help. This process may affect their quality of life. However, there have not been enough studies on quality of life of family caregivers of patients with cancer in Turkish culture. Therefore, this study aimed to evaluate the quality of life of family caregivers of patients with cancer in Turkey. Objectives: The purpose of study was to evaluate the quality of life of family caregivers with cancer patients in Turkey. Methods: Participants consist of the family caregivers who volunteered to take part in this descriptive study from 11 hospitals (n =378) which has a daily chemotherapy units and located within the boundaries of Ankara, Turkey. ‘Sociodemographic Characteristic Form’ and ‘Quality of Life Scale-Family Version were used as data collection tool. The Kruskal-Wallis and Mann-Whitney U, tests were used for data analysis. Resultes:It is found that there are statistically significant difference among the factors of gender, employment status, income level, and whether caregivers reside with their patients. Family caregivers’ quality of life is negatively affected during the caregiving process (p < 0.05). Conclusion: The results indicate that family caregivers’ quality of life are negatively affected to care process. The results of this research are important as they highlight the need to also consider family caregivers’ quality of life when caring for patients, and study highlight possible areas in which support can be provided for family caregivers of cancer patients in Turkey.

Objective: We investigated the health-related quality of life (HRQL) in survivors of pediatric acute lymphoblastic leukemia (ALL) and evaluated the perceptions of the children, their siblings, and their parents., Materials and Methods: Seventy ALL survivors, who were between 7 and 17 years of age and had completed therapy ≥2 years, were included. The control group consisted of their healthy siblings. HRQL was assessed by the age-specific KINDL R questionnaire., Results: No significant differences could be found among HRQL scores of ALL survivors with respect to variables such as sex, risk group, and having chronic illness. HRQL scores for physical well-being, emotional well-being, family, and social functioning of the patient and sibling self-reports and parent proxy reports were lower than the expected values for healthy and chronically ill children., Conclusion: These results demonstrate that both ALL survivors and their families need help via psychological counseling programs to improve their HRQL even after completion of therapy.

The aim of this study was to determine the factors that affect the dyadic adjustment and quality of life of individuals receiving infertility treatment and to evaluate the effect of dyadic adjustment on their quality of life. This study was conducted as a descriptive and cross-sectional study with 209 males and 213 females. The study data was collected using an introductory information form about socio-demographic characteristics, the Dyadic Adjustment Scale and the FertiQol Scale. The main findings of the study were that gender and marital status influenced dyadic adjustment and quality of life (p <0.05), and that income status affected only dyadic adjustment (p <0.05). There was a statistically significant relationship (37%) between scores for dyadic adjustment and scores for quality of life (p <0.001). It was determined that females in infertility treatment had lower dyadic adjustment and quality of life than men.

Background and Aim: Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive interstitial lung disease (ILD) with unknown etiology that occurs primarily in older adults with a median survival time of 2.5±3.5 years. Since there is no curative treatment for IPF, patients with IPF may have symptoms of depression and anxiety more than those of other interstitial lung diseases. There is a few studies about comparison of anxiety depression with other interstitial lung disease and IPF. In this study, we investigated whether anxiety depression in IPF was more frequent than other ILDs and its effect on quality of life., Methods: The study was designed as a prospective study. Age, sex, smoking status, respiratory symptoms, comorbidities, pulmonary function tests, diffusion capacity of the lungs for carbon monoxide (TLCO), SF-36, and depression/anxiety levels, radiological findings, erythrocyte sedimentation rate (ESR), CRP level, blood gas analysis, complete blood count parameters were recorded., Results: The mean age of 50 IPF and 42 non-IPF interstitial lung disease patients were 67.4±7.1 and 64.9±7.2, respectively. Compared with the non-IPF group, SF-36 total, SF-36 physical function and SF-36 physical role severity were significantly lower in the IPF group, while the GAP score was significantly higher. There was no significant difference between the two groups in HAM-Anxiety and HAM-depression for total scores. But mild anxiety was present in most of non-IPF group. No severe anxiety was observed in this group. Forty-nine of 50 patients with IPF patients had moderate-severe anxiety and the difference was statistically significant compared to non-IPF patients., Conclusions: This is one of the first studies of anxiety and depression symptoms are also important in non IPF ILD like IPF. Patients with non-IPF ILD have similar anxiety depression with IPF patients in this study. This study led to the conclusion that anxiety depression should also be evaluated in non-IPF ILD patients., (Copyright: © 2019.)

Objectives: Fatigue is a common symptom of chronic inflammatory diseases. The objective of this study was to investigate fatigue in patients with Behçet's syndrome (BS) and to examine the relationship between fatigue and disease activity, quality of life, anxiety and depression., Methods: This is a cross-sectional study of 123 BS patients and 71 healthy controls in Turkey. All subjects completed the Multidimensional Assessment of Fatigue (MAF) questionnaire, Short form-36 (SF-36), Hospital Anxiety and Depression (HADS) scale and Health Assessment Questionnaire (HAQ). Disease activity among BS patients was assessed using the Behçet Syndrome Activity Scale (BSAS) and the physician's global assessment (PGA)., Results: BS patients had significantly higher MAF, HADS-depression (HADS-D) and HADS-anxiety (HADS-A) scores than the healthy controls (P < 0.001). Both the physical and mental components of the SF-36 scale were impaired in BS patients (P = 0.0001). BS patients with active disease, depression and anxiety had significantly higher MAF scores compared to BS patients without active disease, depression and anxiety (P = 0.0001). MAF scores showed positive correlations with HADS-A, HADS-D, HAQ scores and negative correlations with SF-36 mental and physical components. In regression analyses, depression, anxiety and physical dysfunction were significantly associated with fatigue, after adjusting for age, sex, SF-36 physical and mental scores, HAQ, HADS-A, HADS-D and BSAS scores (P < 0.05). Decreases in SF-36 physical and mental scores were significant predictive factors for high MAF score in healthy controls (P < 0.05)., Conclusions: Fatigue is common in clinically active BS patients compared with healthy controls and inactive BS patients. Depression, anxiety and physical dysfunction were significantly associated with fatigue., (© 2016 Asia Pacific League of Associations for Rheumatology and John Wiley & Sons Australia, Ltd.)

Objectives: Social support may play a role in effective stress management and make a positive contribution to the health of women with breast cancer. The aim of this study was to determine the ways of coping with stress and levels of perceived social support of women with breast cancer, as well as the associated factors., Methods: The descriptive and cross-sectional study was conducted with 100 women with breast cancer at a training and research hospital in Turkey. Data were collected using an information form including sociodemographic and disease characteristics, the Scale of Ways of Coping with Stress, and the Multidimensional Scale of Perceived Social Support., Results: Effective ways of coping with stress were found to be significantly lower in women who were primary school graduates and who did not undergo surgery (P < .05). The women's levels of effective coping with stress decreased with increasing age, and as the score of perceived social support from family and total score of perceived social support increased, so did the levels of effective coping with stress (P < .05). It was determined that social support and age significantly predicted effective stress management (P < .05)., Conclusions: Social support given to women with breast cancer is a key reference point in effective stress management, and increased age also has an important effect on women's ability to cope with stress., (© 2018 John Wiley & Sons, Ltd.)

Background: Young people with Down syndrome experience varying abilities in activities of daily living, cognitive functioning, behaviour and social skills. The aim of this research was to investigate, from a carer's perspective, the factors that influenced the quality of life of these young people., Methods: Families of young people with Down syndrome (n = 197), aged 16-31 years, living in Western Australia, took part in a questionnaire study regarding young person daily functioning, family characteristics, medical background and quality of life measured by the Kidscreen 27-item scale. Kidscreen-10 total score was used as an outcome in the investigation of determinants with higher scores indicating better quality of life., Results: After adjustment for confounders including carer's mental health measured by the Depression and Anxiety Scale (DASS), global impact of illness as well as impact of mental health and bowel conditions were all negatively associated with the young person's quality of life. Young people who had three or more friends had better quality of life than those with no friends. Scores were lower (reflecting poor quality of life) in individuals who had more behavioural problems but these relationships were attenuated after adjustment for confounders and DASS., Conclusions: Overall, our findings revealed that quality of life of young people with Down syndrome was most negatively associated with burden of medical conditions, but also with lack of friendships. We were somewhat surprised to find the effect of medical problems on quality of life persisting into adolescence and adulthood where in general the burden of medical comorbidities is much less than in childhood., Competing Interests: The authors have declared that no competing interests exist.

Objective: We evaluated improvement of quality of life (QoL) after 1 year of second-line antiretroviral therapy (ART) use in resource-limited settings (RLS) among adult men and women, comparing two randomized treatment arms., Design: The AIDS Clinical Trial Group A5273 was a randomized clinical trial of second-line ART comparing lopinavir/ritonavir (LPV/r) + raltegravir with LPV/r + nucleos(t)ide reverse transcriptase inhibitors (NRTIs) in participants failing a non-NRTI-containing regimen at 15 sites in nine RLS. Participants completed the AIDS Clinical Trial Group short-form-21 which has eight QoL domains with a standard score ranging from 0 (worst) to 100 (best)., Methods: Differences in QoL by randomized arm, as well as by demographic and clinical variables, were evaluated by regression models for baseline and week 48 QoL scores fitted using the generalized estimating equations method., Results: A total of 512 individuals (49% men, median age 39 years) were included. A total of 512 and 492 participants had QoL assessments at baseline and week 48, respectively. QoL improved significantly from baseline to week 48 (P < 0.001 for all domains). There was no significant difference between treatment arms for any domain. Individuals with higher viral load and lower CD4 cell count at baseline had lower mean QoL at baseline but larger improvements such that mean QoL was similar at week 48., Conclusion: Improvements in QoL were similar after starting second-line ART of LPV/r combined with either raltegravir or NRTIs in RLS. QoL scores at baseline were lower among participants with worse disease status prior to starting second-line, but after 1 year similar QoL scores were achieved.

Introduction: Oral nutritional supplement (ONS), an important part of multidisciplinary pulmonary rehabilitation (PR) program, is indicated according to body composition abnormalities in the patients with chronic obtructive pulmonary disease (COPD). We evaluated efficacy of oral nutritional supplement (ONS) during 5-8 months in patients with COPD who completed PR program., Materials and Methods: The data of 41 patients with stable COPD were recorded after the approval had been taken. Patients were grouped according to ONS duration. Group 1 consisted of patients who took ONS during 2 months, group 2: 5 months, group 3: 8 months. In all patients, pulmonary function tests, quality of life, exercise capacity and body composition datas were recorded before and after PR program, at 3rd, 6th month and in 20 patients 1 year follow-up visit., Result: In all groups, improvements after PR in exercise capacity, dyspnea, and body composition sustained at 3 and 6 month. Quality of life was protected in group 1 during six month, in other groups it was over values before PR despite loss at 6. month. All improvements after PR were similiar between groups. In 20 patients with one year follow up, while the improvements in dyspnea and body composition were preserved, both exercise capacity and quality of life decreased, exercise capacity was lower than values before PR., Conclusions: In patients with COPD, after multidisplinary PR program, the improvements in dyspnea, exercise capacity, quality of life were maintained during six months regardless of body composition and ONS duration. Furthermore, while the improvements in body composition, dyspnea, quality of life were protected, exercise capacity was found to be lower than baseline.

Introduction: Patients with Parkinson disease (PD) use multiple drugs. This pill burden with consequent poor adherence may cause worsening of motor symptoms and drug-related problems. Therefore, a multifaceted pharmacist-led intervention program was designed to improve adherence, motor-functioning, and quality of life (QoL) in PD patients., Methods: This prospective pilot study was performed in an outpatient PD clinic, where usual care was compared with stepwise introduction of 3 interventions: unit dose packaging (UDP), Parkinson KinetiGraph (PKG), and pharmacist-led medication review (MR).The study analyzed endpoints at 6 weeks (stage 1, usual care), 10 weeks (stage 2, UDP), 14 weeks (stage 3, UDP + PKG), and 26 weeks (UDP + PKG + MR) on motor symptoms, medication adherence, and QoL., Results: Medication adherence improved significantly after the combined UDP, PKG, and MR intervention in nonadherent patients. On time significantly increased from 56% (±30) at stage 1, to 64% (±25) at stage 3, and to 68% (±27) at stage 4, which correlated with an increase of 1.4 and 2.2 hours in stage 3 and 4, respectively. Quality of life only improved significantly after MR (Parkinson's Disease Questionnaire with 8 domains, 21.0 ± 3.5 in stage 3 vs 19.5 ± 5.3 in stage 4, P = 0.01)., Conclusions: Our data did not support the added value of UDP alone or in combination with PKG. Only the combined intervention of UDP, PKG, and MR showed significant improvements in medication adherence, on time, and QoL. This supports the effectiveness of MR by a clinical pharmacist for PD patients in an outpatient setting. Therefore, this small scale study should be followed by larger-scale trials on this topic.

Background: The Sino-Nasal Outcome Test (SNOT)-22 has multiple items that reflect how nasal disease affects quality of life. Currently, no validated Arabic version of the SNOT-22 is available., Objective: . To develop an Arabic-validated version of SNOT-22., Design: Prospective., Setting: Tertiary care center., Patient and Methods: This single-center validation study was conducted between 2015 and 2017 at King Abdul-Aziz University Hospital, Riyadh, Saudi Arabia. The SNOT-22 English version was translated into Arabic by the forward and backward method. The test and retest reliability, internal consistency, responsiveness to surgical treatment, discriminant validity, sensitivity and specificity all were tested., Main Outcome Measures: Validated Arabic version of the SNOT-22., Results: Of 265 individuals, 171 were healthy volunteers and 94 were chronic rhinosinusitis patients. The Arabic version showed high internal consistency (Cronbach's of 0.94), and the ability to differentiate between diseased and healthy volunteers (P < .001). The translated versions demonstrated the ability to detect the change scores significantly in response to intervention (P < .001)., Conclusion: This is the first validated Arabic version of SNOT-22. The instrument can be used among the Arabic population., Limitations: No subjects from other Arab countries.

Background: Egypt as part of the Eastern Mediterranean region is facing a growing HIV epidemic. Developments in the National HIV Program are associated with an increase in survival of HIV-positive persons. This study aimed to assess health-related quality of life (HRQOL) of healthy children/adolescents of HIV-positive parents compared with healthy children/adolescents of healthy HIV-negative parents., Materials and Methods: A cross-sectional comparative study was conducted. Healthy children aged 3-17 years old of all HIV-positive parents registered in the national HIV treatment center in Alexandria Fever Hospital during the year 2016 were enrolled (n=33) and compared with a comparable group of children of healthy parents (n=33). The HRQOL of studied groups was assessed by interviewing parents using Kinder Lebensqualität Fragebogen questionnaire revised parents' version., Results: Among the HIV-positive persons, 54.5% of their children had poor to fair HRQOL compared with only 9.1% of children of healthy parent group. They had significantly lower HRQOL scores in the physical, mental, family, and friends domains (P<0.05). Adolescents of HIV-positive parents had significantly lower HRQOL score compared with children (P=0.028). Parents' education was the only independent predictor of daughter/son's HRQOL (b=13.073, P=0.014)., Conclusion: HIV-positive status of parents negatively affects the HRQOL of their children. Development of organized social and mental support services to families with HIV-affected member/s within the Egyptian National HIV program is highly recommended with specific focus on adolescents and children, especially those having lower educated parents.

Objective: Among the challenges in conducting clinical trials in large-vessel vasculitis (LVV), including both giant cell arteritis (GCA) and Takayasu arteritis (TA), is the lack of standardized and meaningful outcome measures. The Outcome Measures in Rheumatology (OMERACT) Vasculitis Working Group initiated an international effort to develop and validate data-driven outcome tools for clinical investigation in LVV., Methods: An international Delphi exercise was completed to gather opinions from clinical experts on LVV-related domains considered important to measure in trials. Patient interviews and focus groups were completed to identify outcomes of importance to patients. The results of these activities were presented and discussed in a "Virtual Special Interest Group" using telephone- and Internet-based conferences, discussions through electronic mail, and an in-person session at the 2016 OMERACT meeting. A preliminary core set of domains common for all forms of LVV with disease-specific elements was proposed., Results: The majority of experts agree with using common outcome measures for GCA and TA, with the option of supplementation with disease-specific items. Following interviews and focus groups, pain, fatigue, and emotional effect emerged as health-related quality of life domains important to patients. Current disease assessment tools, including the Birmingham Vasculitis Activity Score, were found to be inadequate to assess disease activity in GCA and standardized assessment of imaging tests were felt crucial to study LVV, especially TA., Conclusion: Initial data from a clinician Delphi exercise and structured patient interviews have provided themes toward an OMERACT-endorsed core set of domains and outcome measures.

Background: Early identification of patients coping poorly is important for compliance with treatment and control of distress. This study aims to investigate the effect of the childhood trauma experience on the type of reaction and adjustment that the person exhibits to the cancer among the patients with breast cancer., Methods: This cross-sectional study enrolled 310 patients with breast cancer. The effect of the childhood trauma and the psychological condition on the adjustment to cancer was investigated by assessing the adjustment to cancer, the experiences of childhood trauma and psychological status of the subjects using mental adjustment to cancer scale (MAC), childhood trauma questionnaire (CTQ28), Beck Depression Inventory (BDI) and Beck anxiety inventory (BAI)., Results: Majority of the subjects (77.4%) showed positive adjustment to cancer. Fighting spirit (63.9%) was the most commonly seen mechanism of adjustment to cancer. Of the subjects, 54.5% suffered at least one of the childhood trauma types. Among the patients, 47.1% had depression and 58.4% had anxiety. In the multivariate logistic regression analysis, emotional neglect and depression, respectively, have an effect on both positive and negative adjustment to cancer., Conclusions: Our study demonstrated that childhood trauma, especially emotional neglect, affects coping and adjustment among the patients with breast cancer. It is necessary to determine the childhood experiences to ensure the development of psychosocial interventions that will increase the adjustment and quality of life after the diagnosis of the cancer.