scholarly journals Motor performance in Prader-Willi syndrome patients and its potential influence on caregiver’s quality of life

PeerJ ◽  
2017 ◽  
Vol 5 ◽  
pp. e4097 ◽  
Author(s):  
Valeria Jia-Yi Chiu ◽  
Li-Ping Tsai ◽  
Jang-Ting Wei ◽  
I-Shiang Tzeng ◽  
Hsin-Chi Wu
Keyword(s):  
Quality Of Life ◽  
Motor Performance ◽  
Short Form ◽  
Stress Index ◽  
Timed Up And Go ◽  
Sit To Stand ◽  
Hand Grip ◽  
Sf 36 ◽  
Primary Family

Background Prader-Willi syndrome (PWS) is a complex, multisystem genetic disorder characterized by a variety of physical, cognitive, and behavioral impairments. PWS is a unique sarcopenia model characterized by an abnormal increase in body fat mass and a decrease in muscle mass that predisposes patients to reduced physical activity, functional limitations, and disability. These manifestations may require both symptomatic and supportive management, thus negatively influencing their lifelong family caregiver’s quality of life. The aim of this study was to examine the functional motor performance of adults with PWS in Taiwan and to measure the quality of life of their primary family caregivers. Methods The functional motor tests consisted of the following: (1) 30-s sit-to-stand test, (2) timed up-and-go test, (3) hand grip and lateral pinch strength tests, and (4) Berg Balance Scale. The World Health Organization Quality of Life-short form (WHOQOL-BREF) and the Short-Form 36 Health Survey Questionnaire (SF-36) were used to evaluate health-related quality of life, and the parenting stress index was used to assess the magnitude of stress within the parent-child system. Results The participants included seven adults (two females and five males) with genetically confirmed PWS and their respective main caregivers. The mean age of the adults with PWS was 25.28 years; range 18–31 years, SD 5.10; the mean BMI was 29.2 kg/m2, SD 6.43. All adults with PWS showed lower hand grip and lateral pinch strengths, fewer sit-to-stand cycles during the 30-s chair stand test, and greater average time during the timed up-and-go test when compared to the normative data on healthy adults. Balance was negatively correlated with the caregiver’s health concepts of social functioning (rs −0.879, P = 0.009) and with role limitations due to physical problems (rs −0.899, P = 0.006) and emotional problems (rs −0.794, P = 0.033); hand grip strength was negatively correlated with bodily pain (rs −0.800, P = 0.031), as assessed using the SF-36 questionnaire. The timed up-and-go test was positively correlated with the social relationship domain (rs 0.831, P = 0.021), as assessed using the WHOQOL-BREF questionnaire. The parenting stress index showed no association with the PWS patient’s physical activities. Conclusions All adults with PWS showed decreased upper and lower limb strength and functional mobility when compared to healthy adults. Some of their motor performance might have negative effects on their primary family members in terms of social participation and physical and emotional role limitations. Future research should explore the relationship between physical performances, psychological difficulties of PWS and caregiver’s QOL.

scholarly journals Pulmonary Function, Functional Exercise Capacity and Quality of Life in Chemical Dependents in Rehabilitation Process

2021 ◽  
Vol 23 (2) ◽  
pp. 154-159
Author(s):  
Diery Fernandes Rugila ◽  
Amanda Velozo Rodrigues Luz ◽  
Natielly Soares Correia ◽  
Jaqueline Stephani Gomes da Silva ◽  
Denner Ildemar Feitosa de Melo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lung Function ◽  
Exercise Capacity ◽  
Short Form ◽  
Timed Up And Go ◽  
Sit To Stand ◽  
Sf 36 ◽  
Functional Exercise ◽  
Functional Exercise Capacity

AbstractThe use of illicit substances can lead to several changes in physical and mental health, which can directly reflect on functional capacity and quality of life. However, there is a lack in the literature on the comparison of these variables between drug addicts and healthy individuals. To compare lung function, functional exercise capacity and quality of life of chemical dependents in rehabilitation process (CDRP) and apparently healthy individuals (AHI). Cross-sectional study that evaluated two groups (CDRP and AHI) matched by gender, age and BMI. Both groups were assessed for lung function (spirometry), quality of life (Short Form 36 questionnaire - SF-36), functional exercise capacity (6-minute walk test - 6MWT, 4-meter gait speed, Timed-up-and-go, Sit-to-Stand and Short Physical Performance Battery). Fifteen men in the CDRP group (31[26-39] years; BMI 23±3 kg/m2) and fifteen men in the AHI group (30[22-34] years; BMI 24±3 kg/m2) were analyzed. The CDRP group had a shorter distance covered in the 6MWT in meters (P=0.0002) and percentage of predicted (P=0.005). There was no difference in the performance of the other functional tests (P≥0.20) and in the pulmonary function (P≥0.46). The CDRP group had worse results in the functional capacity, pain, social aspects and mental health domains of SF-36 (P≤0.04), while in the domains general status, vitality, emotional and physical aspects there was no difference (P≥0.08). CDRP present similar lung function to AHI. However, the first have impaired functional exercise capacity, as well as some aspects of quality of life. Keywords: Drug Users. Motor Activity. Spirometry. Walk Test. Quality of Life. ResumoO uso de substâncias ilícitas pode levar a diversas alterações da saúde física e mental, o que pode refletir diretamente na capacidade funcional e na qualidade de vida. Porém, há uma escassez na literatura sobre a comparação dessas variáveis entre dependentes químicos e indivíduos saudáveis. Comparar função pulmonar, capacidade funcional de exercício e qualidade de vida de dependentes químicos em processo de reabilitação (DQPR) e indivíduos aparentemente saudáveis (AS). Estudo transversal que avaliou dois grupos (DQPR e AS) pareados por gênero, idade e IMC. Ambos os grupos foram avaliados quanto à função pulmonar (espirometria), qualidade de vida (questionário Short Form 36 – SF-36), capacidade funcional de exercício (Teste de Caminhada de 6 minutos - TC6, 4-metre gait speed, Timed-up-and-go, Sit-to-Stand e Short Physical Performace Battery). Foram analisados 15 homens no grupo DQPR (31[26-39] anos; IMC 23±3 kg/m2) e 15 homens no grupo AS (30[22-34] anos; IMC 24±3 kg/m2). O grupo DQPR apresentou uma menor distância percorrida no TC6 em metros (P=0,0002) e porcentagem do predito (P=0,005). Não houve diferença no desempenho dos demais testes funcionais (P≥0,20) e na função pulmonar (P≥0,46). O grupo DQPR apresentou piores resultados nos domínios capacidade funcional, dor, aspectos sociais e saúde mental do SF-36 (P≤0,04), enquanto que nos domínios estado geral, vitalidade, aspectos emocionais e físicos não houve diferença (P≥0,08). Homens dependentes químicos em processo de reabilitação apresentam função pulmonar semelhante a indivíduos aparentemente saudáveis. Entretanto, apresentam capacidade funcional de exercício prejudicada, assim como alguns aspectos da qualidade de vida. Palavras-chave: Usuários de Drogas. Atividade Motora. Espirometria. Teste de Caminhada. Qualidade de Vida.

scholarly journals Ο ρόλος της θεραπευτικής άσκησης στο νερό στη λειτουργική ικανότητα και ποιότητα ζωής ασθενών υπό περιοδική αιμοκάθαρση

2013 ◽  
Author(s):  
Αναστασία Σαμαρά
Keyword(s):  
Short Form ◽  
Walk Test ◽  
Timed Up And Go ◽  
Stand Test ◽  
Short Form 36 ◽  
Sit To Stand ◽  
Hand Grip ◽  
Sf 36 ◽  
Grip Test

Τα προγράμματα αποκατάστασης σε νερό έχουν αποδειχθεί ότι καλύπτουν μία ευρεία κλίμακα παθήσεων, από οξείς τραυματισμούς έως χρόνια νοσήματα. Οι ασθενείς με ΧΝΝ τελικού σταδίου που υποβάλλονται σε περιοδική αιμοκάθαρση, εμφανίζουν μειωμένη φυσική επάρκεια και χαμηλά ποσοστά συμμετοχής σε προγράμματα άσκησης, λόγω των πολλαπλών προβλημάτων υγείας που αντιμετωπίζουν και του φόβου εμφάνισης επιπλοκών. Σκοπός της παρούσας έρευνας ήταν η διερεύνηση και αξιολόγηση της επίδρασης ενός προγράμματος άσκησης στο νερό στην λειτουργική ικανότητα και ποιότητα ζωής αιμοκαθαιρόμενων ασθενών τελικού σταδίου και η σύγκριση αυτού του τύπου άσκησης με τη γύμναση κατά τη διάρκεια της αιμοκάθαρσης. Στη μελέτη συμμετείχαν 42 ασθενείς, που χωρίστηκαν τυχαία σε τρεις ομάδες, σύμφωνα με το πρωτόκολλο άσκησης που ακολούθησαν. Στην ομάδα Α εντάχθηκαν δεκαπέντε ασθενείς που ακολούθησαν πρόγραμμα άσκησης σε πισίνα, με κλασική κολύμβηση και υδρογυμναστική. Το πρόγραμμα περιελάμβανε αερόβια άσκηση για 30-40 λεπτά και ασκήσεις ενδυνάμωσης για 10-15 λεπτά, επί 4 μήνες, 3 φορές την εβδομάδα. Στην ομάδα Β συμμετείχαν επίσης δεκαπέντε ασθενείς που ασκήθηκαν κατά την διάρκεια της αιμοκάθαρσης στην μονάδα Τεχνητού Νεφρού της Νεφρολογικής κλινικής, με πρόγραμμα αερόβιας άσκησης και ασκήσεις ενδυνάμωσης άνω και κάτω άκρων. Το πρόγραμμα περιελάμβανε αερόβια άσκηση σε εργοποδήλατο, διάρκειας 20-40 λεπτά και ασκήσεις ενδυνάμωσης με λάστιχα και βαράκια, επί 4 επίσης μήνες, 3 φορές την εβδομάδα. Η ομάδα Γ (άτομα 12) αποτέλεσε την ομάδα ελέγχου, με αντίστοιχης ηλικίας αιμοκαθαιρόμενους ασθενείς που διήγαν καθιστική ζωή. Σε όλους κατά την έναρξη της μελέτης πραγματοποιήθηκε κλινικός έλεγχος, που περιελάμβανε κλινική εξέταση, λήψη ιστορικού, και δοκιμασίες πεδίου για την εκτίμηση της λειτουργικής τους ικανότητας. Τα τεστ που εξετάσθηκαν οι ασθενείς ήταν 1) η 6λεπτη δοκιμασία βαδίσματος (6 min walk test-6MWT), για εκτίμηση της καρδιαγγειακής αντοχής και της λειτουργικής ικανότητας, 2) η δοκιμασία «Κάθισμα-όρθια θέση –κάθισμα» (sit to stand test) για τον καθορισμό της μυϊκής δύναμης 3) η δοκιμασία «Sit and Reach» για αξιολόγηση της ευλυγισίας των οπίσθιων μηριαίων, 4) το ισομετρικό «Hand Grip test» για την αποτίμηση της δύναμης χειρολαβής, και 5) η δοκιμασία «Έγερση και απομάκρυνση» (“Timed Up and Go”) για την εκτίμηση της κινητικότητας τους. Επίσης όλοι οι συμμετέχοντες κλήθηκαν να συμπληρώσουν το ερωτηματολόγιο Short Form-36 Questionnaire (SF-36), για την εκτίμηση της ποιότητας ζωής τους. Όλοι οι συμμετέχοντες ασθενείς εξετάστηκαν στις ίδιες δοκιμασίες μετά το τέλος των τεσσάρων μηνών και το πέρας των προγραμμάτων άσκησης. Κατά την έναρξη της μελέτης όλες οι τιμές των ασθενών ήταν παρεμφερείς, χωρίς στατιστικά σημαντικές διαφορές. Με το πέρας της 4-μηνης γύμνασης διαφορές εμφανίστηκαν σχεδόν σε όλες τις μετρούμενες παραμέτρους από την αρχική στη τελική μέτρηση, με τις ασκούμενες ομάδες να βελτιώνουν τις επιδόσεις τους. Συγκεκριμένα μετά το πέρας των 4 μηνών, οι ασθενείς που συμμετείχαν στο πρόγραμμα άσκησης στο νερό, παρουσίασαν σημαντική αύξηση στην απόσταση που διένυσαν στην «6-λεπτη δοκιμασία βαδίσματος» κατά 12%, (p<0,05) και η ομάδα Γ εμφάνισε μείωση της επίδοσής της κατά 9,74% (p<0,05) σε σχέση με την αρχική της μέτρηση. Η ομάδα Β δεν εμφάνισε στατιστικά σημαντικές διαφορές. Στη δοκιμασία «κάθισμα-όρθια θέση-κάθισμα» η ομάδα Α βελτίωσε κατά 13,63% (p<0,05) την επίδοσή της, η ομάδα Β κατά 7,36% (p<0,05) και η ομάδα Α συγκριτικά με την ομάδα Γ κατά 39,47% (p<0,05). Στη δοκιμασία «δύναμης χειρολαβής» η ομάδα Α αύξησε κατά 7,51% (p<0,05), και η ομάδα Γ εμφάνισε στατιστικά σημαντική μείωση κατά 5,84% (p<0,05), αλλά παρ’όλα αυτά δεν παρουσιάστηκαν στατιστικά σημαντικές διαφορές μεταξύ των τριών ομάδων. Στη δοκιμασία «Sit and Reach» η ομάδα Α βελτίωσε την αρχική μέτρηση κατά 87,24% (p<0,05) και εμφάνισε μεγάλη διαφορά σε σχέση με την ομάδα Γ. Στη δοκιμασία «Έγερση και απομάκρυνση» η ομάδα Α βελτίωσε την αρχική της μέτρηση κατά 16,36% (p<0,05) και κατά 50% συγκριτικά με την ομάδα Γ (p<0,05). Επίσης η ομάδα Γ εμφάνισε μείωση κατά 13,11% (p<0,05) συγκριτικά με την αρχική της μέτρηση. Τέλος, η ομάδα Α βελτίωσε τη συνεχόμενη διανυόμενη απόσταση κολύμβησης κατά 290,1% (p<0,05). Όσον αφορά την εκτίμηση της ποιότητας ζωής μέσω των ερωτηματολογίων, υπήρξαν στατιστικά σημαντικές διαφορές μεταξύ των αρχικών και των τελικών μετρήσεων. Για τις μεν ομάδες Α και Β διότι βελτίωσαν την αρχική τους βαθμολογία, τη δε ομάδα Γ διότι μειώθηκε η αρχική βαθμολογία. Συγκεκριμένα, όσον αφορά τη σωματική υγεία, στατιστικά σημαντική βελτίωση παρουσίασαν η ομάδα Α και Β κατά 9,67% (p<0,05) και 5,14% (p<0,05) αντίστοιχα. Αντίθετα, ενώ η ομάδα Γ εμφάνισε μείωση κατά 5,19% δεν θεωρήθηκε στατιστικά σημαντική διαφορά. Όσον αφορά τη πνευματική υγεία η ομάδα Α εμφάνισε βελτίωση κατά 19,77% (p<0,05) και 16,53% (p<0,05) σε σχέση με την ομάδα Β και 26,83% (p<0,05) σε σχέση με την ομάδα Γ. Συμπεραίνεται λοιπόν ότι η θεραπευτική άσκηση στο νερό, με τη μορφή της κλασικής κολύμβησης και της υδρογυμναστικής επιφέρει σημαντικές βελτιώσεις τόσο στην λειτουργική ικανότητα όσο και στην ποιότητα ζωής ασθενών με χρόνια νεφρική νόσο υπό περιοδική αιμοκάθαρση. Ακόμη, η άσκηση στο νερό επιφέρει μεγαλύτερες προσαρμογές στον οργανισμό των ασθενών με χρόνια νεφρική νόσο υπό περιοδική αιμοκάθαρση, συγκριτικά με την άσκηση κατά τη διάρκεια της αιμοκάθαρσης, όπως αυτές οι προσαρμογές αποτιμώνται μέσα από δοκιμασίες πεδίου και συμπλήρωση ερωτηματολογίου ποιότητας ζωής.

Quality of life of patients with Sjogren’s disease with ongoing therapy with diseasemodifying antirheumatic drugs

2020 ◽  
pp. 33-38
Author(s):  
E. Yu. Gan ◽  
L. P. Evstigneeva
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Life Quality ◽  
Well Being ◽  
Disease Modifying Antirheumatic Drugs ◽  
Antirheumatic Drugs ◽  
Sf 36 ◽  
Disease Modifying ◽  
Sjögren’S Disease

Purpose of the study. Assessing the association between the life quality of patients with Sjogren’s Disease and ongoing therapy with various disease-modifying antirheumatic drugs.Material and methods. The study was conducted on the basis of the regional rheumatology center of the consultative diagnostic clinic of the Sverdlovsk Regional Clinical Hospital No. 1. This work is based on the results of a simultaneous study of 74 patients with primary Sjogren’s Disease (SD), distributed in three comparison groups receiving various disease-modifying antirheumatic drugs chlorambucil, methotrexate and hydroxychloroquine. The diagnosis of SD was carried out according to European-American criteria AECGC (2002) [18]. In order to analyze the quality of life of patients with SD, the 36-Item Short Form Health Survey (SF‑36) was used. Statistical data processing was carried out using Statistica 7.0 program.Results. Assessment of the quality of life of patients with SD, which is an integrative criterion of human health and well-being, revealed the absence of statistically significant differences (p > 0.05) on eight scales and two health components of the SF‑36 questionnaire in the analyzed groups that differ in the treatment of disease-modifying antirheumatic drugs chlorambucil, methotrexate and hydroxychloroquine.Conclusions. The obtained data indicate an equivalent quality of life in SD patients treated with different disease-modifying antirheumatic drugs methotrexate, chlorambucil and hydroxychloroquine, and therefore hydroxychloroquine can be considered as an alternative basic therapy in patients with SD with certain limitations and contraindications methotrexate and chlorambucil.

Translation and Validation of the Thai Version of the Wisconsin Quality of Life Questionnaire (TH WISQoL) for Kidney Stone Patients

2020 ◽  
Vol 103 (11) ◽  
pp. 1194-1199
Keyword(s):  
Quality Of Life ◽  
Internal Consistency ◽  
Kidney Stone ◽  
Convergent Validity ◽  
Large Scale ◽  
Short Form ◽  
Outcome Measurement ◽  
Life Questionnaire ◽  
Sf 36

Objective: To develop and validate a Thai version of the Wisconsin Quality of Life (TH WISQoL) Questionnaire. Materials and Methods: The authors developed the TH WISQoL Questionnaire based on a standard multi-step process. Subsequently, the authors recruited patients with kidney stone and requested them to complete the TH WISQoL and a validated Thai version of the 36-Item Short Form Survey (TH SF-36). The authors calculated the internal consistency and interdomain correlation of TH WISQoL and compared the convergent validity between the two instruments. Results: Thirty kidney stone patients completed the TH WISQoL and the TH SF-36. The TH WISQoL showed acceptable internal consistency for all domains (Cronbach’s alpha 0.768 to 0.909). Interdomain correlation was high for most domains (r=0.698 to 0.779), except for the correlation between Vitality and Disease domains, which showed a moderate correlation (r=0.575). For convergent validity, TH WISQoL demonstrated a good overall correlation to TH SF-36, (r=0.796, p<0.05). Conclusion: The TH WISQoL is valid and reliable for evaluating the quality of life of Thai patients with kidney stone. A further large-scale multi-center study is warranted to confirm its applicability in Thailand. Keywords: Quality of life, Kidney stone, Validation, Outcome measurement

scholarly journals Evaluation of the Use of Sterilized and Non-Sterilized Peruibe Black Mud in Patients with Knee Osteoarthritis

2021 ◽  
Vol 18 (4) ◽  
pp. 1666 ◽  
Author(s):  
Paulo Fávio Macedo Gouvêa ◽  
Zélia Maria Nogueira Britschka ◽  
Cristina de Oliveira Massoco Salles Gomes ◽  
Nicolle Gilda Teixeira de Queiroz ◽  
Pablo Antonio Vásquez Salvador ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Knee Osteoarthritis ◽  
Short Form ◽  
Serum Levels ◽  
Double Blind ◽  
Sf 36 ◽  
Radiographic Grade ◽  
Physical Functions ◽  
Kellgren And Lawrence

This study aimed to evaluate the effects of treatment with Peruíbe Black Mud (PBM) on the clinical parameters and quality of life of patients with knee osteoarthritis and to compare the effects of PBM samples simply matured in seawater and PBM sterilized by gamma radiation. A controlled, double-blind trial was conducted with 41 patients divided into two treatment groups composed of 20 and 21 patients: one group was treated with matured PBM and the other with sterilized PBM. Evaluations were done using the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) and the Medical Outcomes Study Short Form 36 (SF-36) questionnaires, the Kellgren and Lawrence (KL) radiographic scale, and the quantification of the serum levels of inflammatory biomarkers. An improvement in pain, physical functions, and quality of life was observed in all of the patients who underwent treatment with both simply matured and sterilized PBM. Nine patients showed remission in the KL radiographic scale, but no statistically significant differences were observed in the serum levels of inflammatory mediators before or after treatment. Peruíbe Black Mud proves to be a useful tool as an adjuvant treatment for knee osteoarthritis (OA), as shown by the results of the WOMAC and SF-36 questionnaires and by the remission of the radiographic grade of some patients on the Kellgren and Lawrence scale.

scholarly journals Comparing quality of life between patients undergoing trans-areola endoscopic thyroid surgery and trans-oral endoscopic thyroid surgery

BMC Surgery ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Shuang Shen ◽  
Xiaochi Hu ◽  
Rui Qu ◽  
Youming Guo ◽  
Libo Luo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Thyroid Surgery ◽  
Short Form ◽  
Endoscopic Thyroidectomy ◽  
Operation Time ◽  
Endoscopic Thyroid Surgery ◽  
Sf 36 ◽  
Areola Approach ◽  
High Level

Abstract Background Compared with conventional open surgery, endoscopic thyroidectomy via the oral vestibular approach (ETVOA) and endoscopic thyroidectomy via the areola approach (ETAA) avoided scarring of the skin, which may help patients achieve a better quality of life (QOL). However, the benefit of the QOL from this technique has not been adequately investigated, therefore this study compared the QOL outcomes between ETVOA and ETAA. Methods 131 patients were enrolled in this study. ETAA surgery and ETVOA surgery were performed in 74 patients and 57 patients, respectively. These patients were followed up at 2 weeks, 4 weeks, and 8 weeks, and their QOL was evaluated using a thyroid surgery-specific questionnaire and a short-form health survey (SF-36). Results There were no differences in clinical characteristics such as gender, age, body mass index (BMI), and tumor size between the two groups. The volume of intraoperative blood loss, cost of hospitalization, and complications between the two procedures showed no differences. Compared with ETAA, ETVOA has a longer operation time, no drainage, and shorter hospital stay. In the QOL questionnaire, several parameters in ETVOA were better. The satisfaction scores of patients undergoing ETVOA were higher. In addition, the cosmetic satisfaction in patients who received ETOVA was significantly better than that of patients who underwent ETAA. The degree of neck movement disorder in patients with ETVOA was milder. Patients who received ETVOA had higher score on the SF-36. Conclusions The trans-oral endoscopic approach can acquire better cosmetic results and achieved high-level QOL.

scholarly journals The impact of symptoms on daily life as perceived by patients with Charcot-Marie-Tooth type 1A disease

2021 ◽  
Author(s):  
Stefano Tozza ◽  
Dario Bruzzese ◽  
Daniele Severi ◽  
Emanuele Spina ◽  
Rosa Iodice ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Daily Life ◽  
Short Form ◽  
Lower Limbs ◽  
Charcot Marie Tooth ◽  
Rank Analysis ◽  
Sf 36 ◽  
Tooth Type ◽  
The Impact

Abstract Introduction In Charcot-Marie-Tooth type 1A (CMT1A) patients, daily life is mainly influenced by mobility and ambulation dysfunctions. The aim of our work was to evaluate the perception of disturbances that mostly impact on daily life in CMT1A patients and its difference on the basis of age, gender, disability, and quality of life. Methods Forty-one CMT1A patients underwent neurological assessment focused on establishing clinical disability through the Charcot-Marie-Tooth Neuropathy Score (CMTNS) and quality of life through the Short Form-36 (SF-36) questionnaire. We identified from CMT disturbances 5 categories [weakness in lower limbs (WLL), weakness in upper limbs (WUL), skeletal deformities (SD), sensory symptoms (SS), balance (B)] and patients classified the categories from the highest to the lowest impact on daily life (1: highest; 5: lowest). Ranking of the 5 categories, in the overall sample and in the different subgroups (dividing by gender, median of age and disease duration, CMTNS, domains of SF-36), was obtained and differences among subgroups were assessed using a bootstrap approach. Results Rank analysis showed that WLL was the most important disturbance on daily life whereas WUL had the lowest impact. In the older CMT1A group, the most important disturbance on daily life was B that was also the most relevant disturbance in patients with a greater disability. SD influenced daily life in younger patients. SS had less impact on daily life, with the exception of patients with a milder disability. Discussion Our findings demonstrated that the perception of disturbances that mostly impact on CMT1A patients’ daily life changes over the lifetime and with degree of disability.

scholarly journals Impact of depression on quality of life in systemic lupus erythematosus patients

2021 ◽  
Vol 57 (1) ◽  
Author(s):  
Eman M. Khedr ◽  
Rania M. Gamal ◽  
Sounia M. Rashad ◽  
Mary Yacoub ◽  
Gellan K. Ahmed
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Short Form ◽  
Systemic Lupus ◽  
Positive Correlation ◽  
Depressed Patients ◽  
Sf 36 ◽  
The Impact

Abstract Background Depression is common in systemic lupus erythematosus (SLE) and is an unmeasured risk factor, yet its symptoms can be neglected in standard disease evaluations. The purpose of this study was to assess the frequency and the impact of depression on quality of life in SLE patients. We recruited 32 patients with SLE and 15 healthy control volunteers in the study. The following investigations were undertaken in each patient: clinical and rheumatologic assessment, SLE Disease Activity Index-2k (SLEDAI-2k), Beck Depression Inventory (BDI), Short-Form Health Survey (SF-36) questionnaire, and routine laboratory tests. Results There was a high percentage of depression (46.9%) in the SLE patients. Regarding quality of life (SF-36), there were significant affection of the physical and mental composite summary domains (PCS and MCS) scores in lupus patients compared with controls (P < 0.000 for both) with the same significant in depressed compared with non-depressed patients. SF-36 subscales (physical function, limit emotional, emotional wellbeing, and social function) were significantly affected in depressed lupus patients compared with non-depressed patients. There was a significant negative correlation between the score of MCS domain of SF-36 with BDI (P < 0.000) while positive correlation between SLEDAI score with depression score. In contrast, there were no significant correlations between MCS or PCS with age, duration of illness, or SLEDAI-2K. Conclusions Depression is common in SLE patients and had a negative impact on quality of life particularly on MCS domain and positive correlation with disease severity score. Trial registration This study was registered on clinical trial with registration number: NCT03165682 https://clinicaltrials.gov/ct2/show/NCT03165682 on 24 May 2017.

Factors Affecting Health-Related Quality of Life After the Arterial Switch Operation

2021 ◽  
Vol 12 (3) ◽  
pp. 344-351
Author(s):  
Julie Cleuziou ◽  
Anna-Katharina Huber ◽  
Martina Strbad ◽  
Masamichi Ono ◽  
Alfred Hager ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Arterial Switch Operation ◽  
Health Related Quality ◽  
Switch Operation ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
Cardiac Medication

Background: Long-term morbidity and mortality outcomes of the arterial switch operation (ASO) in patients with transposition of the great arteries and Taussig-Bing anomaly are excellent. With an increasing number of patients reaching adolescence and adulthood, more attention is directed toward quality of life. Our study aimed to determine the health-related quality of life (hrQoL) outcomes in patients after the ASO and identify factors influencing their hrQoL. Methods: In this cross-sectional study, hrQoL of patients after ASO was assessed with the German version of the Short Form-36 (SF-36) and the potential association of specified clinical factors was analyzed. Patients of at least 14 years of age who underwent ASO in our institution from 1983 were considered eligible. Results: Of the 355 questionnaires sent to eligible patients, 261 (73%) were available for analysis. Compared to the reference population, patients who had undergone ASO had a significantly higher score in all subscales of the SF-36 except for vitality ( P < .01). Patients with an implanted pacemaker ( P = .002), patients who required at least one reoperation ( P < .001), and patients currently taking cardiac medication ( P < .004) or oral anticoagulation ( P = .036) had lower physical component scores compared to patients without these factors. Conclusions: Patients’ self-assessed and self-reported hrQoL after ASO (using German version of the Short Form 36) is very good. In this population, hrQoL is influenced by reoperation, the need for a pacemaker, and current cardiac medication or anticoagulant use. The development of strategies designed to mitigate or minimize the requirements for, and/or impact of these factors may lead to better hrQoL in this patient population.

Survey of Quality of Life and Related Risk Factors for a Taiwanese Village Population 3 Years Post-Earthquake

2006 ◽  
Vol 40 (4) ◽  
pp. 355-361 ◽  
Author(s):  
Hung-Chi Wu ◽  
Pesus Chou ◽  
Frank Huang-Chih Chou ◽  
Chao-Yueh Su ◽  
Kuan-Yi Tsai ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Risk Factors ◽  
Psychiatric Disorders ◽  
Short Form ◽  
Social Activity ◽  
Economic Problems ◽  
Related Risk ◽  
Sf 36 ◽  
Earthquake Survivors

Objective: To investigate quality of life (QOL) and related risk factors in Taiwanese earthquake survivors diagnosed with different psychiatric disorders 3 years after the 1999 Chi-Chi earthquake. Method: This study was a population survey. Trained assistants used the Medical Outcomes Study Short Form-36 (MOS SF-36) and questionnaires to interview 405 respondents (189 men and 216 women) aged 16 years or older, who had been exposed to the earthquake. Psychiatrists interviewed the same respondents using the Mini-International Neuropsychiatric Interview, with an adjusted response rate of 70.2%. Results: The prevalence range for psychiatric disorders in the earthquake survivors was 0.2–7.2% 3 years after the Chi-Chi earthquake, with rates for major depression (MD) and posttraumatic stress disorder (PTSD) of 6.4% and 4.4%, respectively. The QOL scores for the PTSD/MD group were lower than for the other two diagnostic groups, as determined by assessment of physical and mental aspects of functional integrity from MOS SF-36 scores. The predictors for poor QOL were age, female gender, economic problems, physical illness, subjective assessment of memory and social-activity decline and diagnosis of PTSD or MD. Conclusion: The QOL for earthquake survivors with psychiatric disorders, especially PTSD or MD, was inferior compared with the mentally healthy analogues, with contemporaneous decreases in mental and physical function scores across the QOL subscales. The persistence of long-term economic problems was one of many important factors affecting QOL.

Sign in / Sign up

Export Citation Format

Share Document