Quality of life and associated factors in parents of children with late diagnosed phenylketonuria. A cross sectional study in a developing country (Tunisia)

2020 ◽  
Vol 33 (7) ◽  
pp. 901-913
Author(s):  
Rim Ben Abdelaziz ◽  
Amel Ben Chehida ◽  
Henda Kachouri ◽  
Sana Ben Messaoud ◽  
Maherzia Ferchichi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
At Risk ◽  
General Population ◽  
Associated Factors ◽  
Cross Sectional Study ◽  
Published Data ◽  
Sectional Study ◽  
Cross Sectional ◽  
Sf 36

AbstractObjectivesWe investigated the quality of life (QOL) in parents of children with late treated phenylketonuria (PKU) and its associated factors.MethodsWe conducted a cross sectional study in the reference center of inherited metabolic disease in Tunisia. We used the Tunisian version of the 36-item short-form health survey questionnaire (SF-36). We compared variables in the groups with and without impaired QOL and the SF-36 scores between subgroups of parents and children and between our sample and the Tunisian general population based on published data. We looked for associations between SF-36 scores and quantitative variables. Linear regression and logistic binary regression were used for multivariate analysis.ResultsSixty-five parents from 42 families participated. QOL was impaired in 61% of them. The mean SF-36 score was 55.3 ± 25.07. The physical component sub-score was higher than that reported in the Tunisian general population (63.66 ± 27.77 vs. 50.11 ± 8.53; p<0.001). The mental component sub-score was comparable to that reported in the Tunisian general population (46.99 ± 25.94 vs. 47.96 ± 9.82; p=0.830). Gender (mothers) (p=0.008), low monthly income (p = 0.027), low education (p=0.011), and autism in PKU children (p = 0.001) were associated with impaired QOL.ConclusionsWe identified at risk parents for altered quality of life among parents of PKU children. Our findings were used to develop a psychological and social support strategy for at-risk parents and to promote the implementation of newborn screening of this treatable disease in our low-income country.

Quality of life among polish Fabry patients — a cross-sectional study quality of life among polish Fabry patients

Open Medicine ◽  
2011 ◽  
Vol 6 (6) ◽  
pp. 741-749 ◽  
Author(s):  
Wioletta Żuraw ◽  
Dominik Golicki ◽  
Agnieszka Jurecka ◽  
Anna Tylki-Szymańska
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Fabry Disease ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Sf 36 ◽  
Descriptive System ◽  
Eq Vas

AbstractThis study sought to explore the following issues 1) health-related quality of life (HRQoL) in Fabry patients relative to the general population 2) the quality of life (QoL) level in heterozygous females as compared to hemizygous males and the general population. A prospective, cross-sectional study was performed in patients diagnosed with Fabry disease in Poland (n=33). HRQoL was assessed with two generic questionnaires: the Medical Outcomes Study Short Form-36 (SF-36) and EuroQol questionnaire (EQ-5D), which includes the EQ-5D descriptive system and the EQ-visual analogue scale (EQ VAS), as well as a disease-specific author’s questionnaire. When measured with EQ-VAS, the subjective perception of health status was significantly lower in Fabry patients than that of the general population. SF-36 norm-based scores showed that patients are disadvantaged mainly in social functioning, bodily pain, and mental health. Objective assessments of HRQoL according to the EQ-5D Index tend to be lower for males than for females. Only male patients experienced extreme problems identified by the EQ-5D descriptive system. HRQoL of Fabry patients, measured by EQ-5D and SF-36, is lower as compared with that of the general population. Fabry disease effects QoL in its physical, mental and social dimensions.

scholarly journals The Quality of Life and Associated Factors in Indonesian Meningioma Clients after Surgery: A Cross-Sectional Study

2021 ◽  
Vol 31 (4) ◽  
pp. 157
Author(s):  
Amelia Ganefianty ◽  
Dewi Irawati ◽  
Debie Dahlia ◽  
I Made Kariasa ◽  
Agung Budi Sutiono
Keyword(s):  
Quality Of Life ◽  
Associated Factors ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional

scholarly journals Quality of Life in Women with Deep Endometriosis: A Cross-Sectional Study

2020 ◽  
Vol 42 (02) ◽  
pp. 090-095 ◽  
Author(s):  
Daniela Angerame Yela ◽  
Iuri de Paula Quagliato ◽  
Cristina Laguna Benetti-Pinto
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Cross Sectional Study ◽  
Deep Infiltrating Endometriosis ◽  
Sectional Study ◽  
Deep Endometriosis ◽  
Cross Sectional ◽  
Sf 36 ◽  
Emotional Aspects

Abstract Objective To describe clinical and sociodemographic characteristics of women with deep infiltrating endometriosis (DIE) and assess their quality of life (QOL) during 6 months of medical treatment. Methods A descriptive cross-sectional study of 60 women diagnosed with DIE either by surgery or image methods (ultrasound or magnetic resonance), who received clinical treatment for at least 6 months in the Universidade de Campinas, Campinas, state of São Paulo, Brazil. Both the SF-36 and the EHP-30 questionnaires were used to assess the quality of life. Results The mean age of the patients was 37.7 ± 6.0 years old, with 50% presenting dysmenorrhea; 57% dyspareunia; and 50% chronic pelvic pain. The SF-36 and the EHP-30 revealed impaired quality of life. In the SF-36, the worst domains were limitation due to emotional aspects (40.2 ± 43.1) and self-esteem and disposition (46.1 ± 24.8), whereas in the EHP-30 they were social well-being (50.3 ± 30.6); infertility (48.0 ± 36.3); and sexual intercourse (54.0 ± 32.1). Conclusion Although clinically treated, women with deep endometriosis present impairment in different domains of quality of life regardless of the questionnaire used for evaluation.

scholarly journals The prevalence and associated factors of depression among patients with schizophrenia in Addis Ababa, Ethiopia, cross-sectional study

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Tolesa Fanta ◽  
Desalegn Bekele ◽  
Getinet Ayano
Keyword(s):  
Quality Of Life ◽  
Substance Use ◽  
Suicide Attempt ◽  
Associated Factors ◽  
Cross Sectional Study ◽  
Poor Quality ◽  
Sectional Study ◽  
Comorbid Depression ◽  
Cross Sectional

Abstract Background Depression is common among people with schizophrenia and associated with severe positive and negative symptoms, higher rates of disability, treatment resistance and mortality related to suicide, physical and drug-related causes. However, to our knowledge, no study has been conducted to report the magnitude of depression among people with schizophrenia in Ethiopia. Therefore, this study aimed to determine the prevalence and associated factors of depression among people with schizophrenia. Method A hospital-based cross-sectional study was conducted among 418 patients with schizophrenia selected by systematic sampling technique. Patient Health Questionnaire 9 (PHQ-9) was used to measure depression among the study participants. To identify the potential contributing factors, we performed binary and multivariable logistic regression analysis adjusting the model for the potential confounding factors. Odds ratios (OR) with the corresponding 95% confidence interval (95%CI)) was determined to evaluate the strength of association. Result The prevalence estimate of depression among people with schizophrenia was found to be 18.0% [95% confidence interval: 14.50–22.30]. Our multivariable analysis revealed that current substance use (AOR 2.28, 95%CI (1.27, 4.09), suicide attempt (AOR 5.24, 95%CI (2.56, 10.72), duration of illness between 6 and 10 years (AOR 2.09, 95%CI (1.08, 4.04) and poor quality of life (AOR 3.13, 95%CI (1.79, 5.76) were found to be the factors associated with depression among people with schizophrenia. Conclusion The current study revealed that comorbid depression was high among people with schizophrenia and associated with current substance use, suicide attempt, and long duration of the illness as well as poor quality of life. Attention needs to be given to address comorbid depression among people with schizophrenia.

scholarly journals Lower Urinary Tract Symptoms, Erectile Dysfunction, and Quality of Life in Poststroke Men: A Controlled Cross-Sectional Study

2017 ◽  
Vol 11 (3) ◽  
pp. 748-756 ◽  
Author(s):  
Sigrid Tibaek ◽  
Gunvor Gard ◽  
Christian Dehlendorff ◽  
Helle K. Iversen ◽  
Fin Biering-Soerensen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cross Sectional Study ◽  
Healthy Controls ◽  
Age Group ◽  
Sectional Study ◽  
Cross Sectional ◽  
Sf 36 ◽  
Urinary Tract Symptoms ◽  
Lower Urinary

The aim of the current study was to compare lower urinary tract symptoms (LUTS), erectile dysfunction (ED), and quality of life (QoL) in poststroke and healthy men. Thirty poststroke men with stroke-related LUTS, and as controls, 96 healthy men participated in this controlled, cross-sectional study. Participants filled in the Danish Prostate Symptom Score (DAN-PSS-1) Questionnaire, the International Index of Erectile Function (IIEF-5), the 36-Item Short Form (SF-36), the Nocturia Quality-of-Life (N-QoL) Questionnaire. In the age group ≤55 years, comparing poststroke men with healthy controls both with LUTS, the results indicated DAN-PSS-1, total score median 13 (4-17) versus 3 (2-6), p = .05; IIEF-5 25 (14-25) versus 24 (23-25), p = .06; SF-12, total score 499 (360-679) versus 695 (644-734), p = .02; and N-QoL 98 (70-100) versus 96 (90-100), p = .65. In the age group >55 years, comparing poststroke men with healthy controls both with LUTS, the results indicated DAN-PSS-1, total score 13 (8-24) versus 5 (2-7), p < .01; IIEF-5 13 (5-20) versus 25 (24-25), p < .01; SF-36, total score 585 (456-718) versus 742 (687-772), p < .01; and N-QoL, total score 81 (66-95) versus 98 (80-100), p < .01. The results demonstrated that in age group above, but not below 55 years, poststroke men with LUTS had significantly higher frequency of severe and bothersome LUTS and ED than the healthy controls with LUTS, while QoL and N-QoL were significantly lower in comparison. It is recommended to identify and assess older poststroke men for LUTS, ED, and QoL.

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