Quality of life in Turkish patients with Familial Mediterranean Fever: Association with fatigue, psychological status, disease severity and other clinical parameters

Aim of the work: To evaluate the quality of life (QoL) in Familial Mediterranean Fever (FMF) patients, and determine its association with fatigue, depression, disease severity and other clinical parameters. Patients and methods: Sixty FMF patients were included. QoL was assessed by Short Form-36 (SF-36), depression by Hamilton Depression Scale (HDS), and fatigue by Fatigue severity scale (FSS). Disease severity score and Mutations of the Mediterranean fever (MEFV) gene were assessed. Results: The mean age of patients was 33.73 ± 9.81 years and disease duration 14.6 ± 12.1 years. They were 35 females and 25 males. FMF patients scored significantly higher in FSS (29.9 ± 17.6) and HDS (15.1 ± 8.5) compared to the control (10.6 ± 7.1 and 6.3 ± 9.4; p < 0.0001 respectively) while all SF36 sub-items except mental health were significantly lower (p < 0.05). MEFV gene mutation was present in 49 (81.7%) patients. The visual analogue scale of pain significantly negatively correlated with the FSS (p < 0.0001), HDS (p < 0.0001) and all SF36 sub-items except mental health (p < 0.0001). Disease duration, age of onset, and duration of attacks showed no significant correlation with FSS, HDS and SF36. Delay in diagnosis significantly correlated with FSS (p < 0.0001) and negatively with SF36 sub-items physical role (p = 0.02), general health (p = 0.01) and social functioning (p = 0.03). Age of diagnosis significantly correlated with FSS (p = 0.03) and negatively with SF36-vitality (p = 0.047). There was a significant effect of disease severity on QoL, fatigue and depression (p < 0.05). Conclusion: QoL is associated with fatigue, depression and disease severity in FMF patients. It should be used in routine clinical evaluation as an outcome measure in FMF. Keywords: Familial Mediterranean Fever, Quality of life, Fatigue, Depression, Disease severit

Health related quality of life in Turkish polio survivors: impact of post-polio on the health related quality of life in terms of functional status, severity of pain, fatigue, and social, and emotional functioning

ABSTRACT Objective: To determine the impact of postpolio-syndrome on quality of life in polio survivors. Methods: Forty polio survivors were included in the study. Twenty-one patients fulfilling the Halstead's postpolio-syndrome criteria participated in postpolio-syndrome group. The remaining nineteen patients formed non-postpolio-syndrome group. Control group was composed of forty healthy subjects. Quality of life was evaluated by Nottingham Health Profile, depression by Beck Depression Scale and fatigue by Fatigue Symptom Inventory. Isometric muscle strength was measured by manual muscle testing. Results: Total manual muscle testing score was 26.19 ± 13.24 (median: 29) in postpolio-syndrome group and 30.08 ± 8.9 (median: 32) in non-postpolio-syndrome group. Total manual muscle testing scores of non-postpolio-syndrome group were significantly higher than that of postpolio-syndrome group. Patients with postpolio-syndrome reported significantly higher levels of fatigue and reduced quality of life in terms of physical mobility, pain and energy when compared with patients without postpolio-syndrome and control group. It was not reported a statistically significant difference in social and emotional functioning and sleep quality between postpolio-syndrome, non-postpolio-syndrome and control groups. Also it was not found any statistically significant difference in Beck Depression Scale scores among the groups. Conclusions: Postpolio-syndrome has a negative impact on quality of life in terms of functional status, severity of pain and energy. The identification, early recognition and rehabilitation of postpolio-syndrome patients may result in an improvement in their quality of life

Effects of Speech Output on Maintenance of Requesting and Frequency of Vocalizations in Three Children with Developmental Disabilities

Item does not contain fulltextWe evaluated the role of digitized speech output on the maintenance of requesting and frequency of vocalizations in three children with developmental disabilities. The children were taught to request access to preferred objects using an augmentative communication speech-generating device (SGD). Following acquisition, rates of requesting and vocalizations were compared across two conditions (speech output on versus speech output off) that were alternated on a session-by-session basis. There were no major or consistent differences across the two conditions for the three children, suggesting that access to preferred objects was the critical variable maintaining use of the SGDs. The results also suggest that feedback in the form of digitized speech from the SGD did not inhibit vocalizations. One child began to speak single words during the latter part of the study, suggesting that in some cases AAC intervention involving SGDs may facilitate speech

Turkish League Against Rheumatism (Tlar) Recommendations For The Pharmacological Management Of Rheumatoid Arthritis: 2018 Update Under Guidance Of Current Recommendations

Objectives: This study aims to report the assessment of the Turkish League Against Rheumatism (TLAR) expert panel on the compliance and adaptation of the European League Against Rheumatism (EULAR) 2016 recommendations for the management of rheumatoid arthritis (RA) in Turkey. Patients and methods: The EULAR 2016 recommendations for the treatment of RA were voted by 27 specialists experienced in this field with regard to participation rate for each recommendation and significance of items. Afterwards, each recommendation was brought forward for discussion and any alteration gaining >= 70% approval was accepted. Also, Turkish version of each item was rearranged. Last version of the recommendations was then revoted to determine the level of agreement. Levels of agreement of the two voting rounds were compared with Wilcoxon signed-rank test. In case of significant difference, the item with higher level of agreement was accepted. In case of no difference, the changed item was selected. Results: Four overarching principles and 12 recommendations were assessed among which three overarching principles and one recommendation were changed. The changed overarching principles emphasized the importance of physical medicine and rehabilitation specialists as well as rheumatologists for the care of RA patients in Turkey. An alteration was made in the eighth recommendation on treatment of active RA patients with unfavorable prognostic indicators after failure of three conventional disease modifying anti-rheumatic drugs. Remaining principles were accepted as the same although some alterations were suggested but could not find adequate support to reach significance. Conclusion: Expert opinion of the TLAR for the treatment of RA was composed for practices in Turkish rheumatology and/or physical medicine and rehabilitation clinics.WoSScopu

Turkish League Against Rheumatism Consensus Report: Recommendations For Management Of Axial Spondyloarthritis

Objectives: This study aims to update 2011 Turkish League Against Rheumatism SpondyloArthritis Recommendations, and to compose a national expert opinion on management of axial spondyloarthritis under guidance of current guidelines, and implantation and dissemination of these international guidelines into our clinical practice. Materials and methods: A scientific committee of 28 experts consisting of 14 rheumatologists and 14 physical medicine and rehabilitation specialists (one of them also has an immunology PhD) was formed. The recommendations, systematic reviews, and meta-analyses including pharmacologic and non-pharmacologic treatment were scrutinized paying special attention with convenient key words. The draft of Turkish League Against Rheumatism opinion whose roof consisted of international treatment recommendations, particularly the Assessment of SpondyloArthritis International Society/European League Against Rheumatism recommendations was composed. Assessment of level of agreement with opinions by task force members was established through the Delphi technique. Voting using a numerical rating scale assessed the strength of each recommendation. Results: Panel compromised on five basic principles and 13 recommendations including pharmacological and nonpharmacological methods. All of the recommendations had adequate strength. Conclusion: Turkish League Against Rheumatism expert opinion for the management of axial spondyloArthritis was developed based on scientific evidence. These recommendations will be updated regularly in accordance with current developments

Turkish League Against Rheumatism (Tlar) Recommendations For The Pharmacological Management Of Rheumatoid Arthritis: 2018 Update Under Guidance Of Current Recommendations

Objectives: This study aims to report the assessment of the Turkish League Against Rheumatism (TLAR) expert panel on the compliance and adaptation of the European League Against Rheumatism (EULAR) 2016 recommendations for the management of rheumatoid arthritis (RA) in Turkey. Patients and methods: The EULAR 2016 recommendations for the treatment of RA were voted by 27 specialists experienced in this field with regard to participation rate for each recommendation and significance of items. Afterwards, each recommendation was brought forward for discussion and any alteration gaining >= 70% approval was accepted. Also, Turkish version of each item was rearranged. Last version of the recommendations was then revoted to determine the level of agreement. Levels of agreement of the two voting rounds were compared with Wilcoxon signed-rank test. In case of significant difference, the item with higher level of agreement was accepted. In case of no difference, the changed item was selected. Results: Four overarching principles and 12 recommendations were assessed among which three overarching principles and one recommendation were changed. The changed overarching principles emphasized the importance of physical medicine and rehabilitation specialists as well as rheumatologists for the care of RA patients in Turkey. An alteration was made in the eighth recommendation on treatment of active RA patients with unfavorable prognostic indicators after failure of three conventional disease modifying anti-rheumatic drugs. Remaining principles were accepted as the same although some alterations were suggested but could not find adequate support to reach significance. Conclusion: Expert opinion of the TLAR for the treatment of RA was composed for practices in Turkish rheumatology and/or physical medicine and rehabilitation clinics.WoSScopu