17891 Quality of life score in Indian patients with epidermolysis bullosa and its correlation with clinical severity assessment scores

2020 ◽  
Vol 83 (6) ◽  
pp. AB202
Author(s):  
Rahul Mahajan ◽  
Anuradha Bishnoi ◽  
Seema Manjunath ◽  
Kamal Kishore ◽  
Dipankar De ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Epidermolysis Bullosa ◽  
Clinical Severity ◽  
Severity Assessment ◽  
Life Score ◽  
Assessment Scores ◽  
Indian Patients

scholarly journals Hindi translation and validation of quality of life score in Indian patients with epidermolysis bullosa; and its correlation with the clinical severity assessment scores: A cross-sectional study

2021 ◽  
Vol 0 ◽  
pp. 1-7
Author(s):  
Anuradha Bishnoi ◽  
Seema Manjunath ◽  
Kamal Kishore ◽  
Dipankar De ◽  
Sanjeev Handa ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Epidermolysis Bullosa ◽  
Cross Sectional Study ◽  
Clinical Severity ◽  
Moderate Degree ◽  
Cross Sectional ◽  
Dystrophic Epidermolysis Bullosa ◽  
Assessment Scores ◽  
Indian Patients

Background: Quality of life (QoL) has not been evaluated in Indian patients having epidermolysis bullosa (EB). Aims: The aims of the study were to measure health-related QoL in Indian patients having EB using the quality of life in epidermolysis bullosa (QoLEB) questionnaire, and to find its correlation with clinically measured disease severity. Methods: In this observational cross-sectional study, the QoLEB questionnaire was translated from English to Hindi (QoLEB-Hin) and culturally adapted without a change in concept following standard guidelines. QoLEB-Hin and three clinical scores that have been independently validated in EB, that is, Birmingham Epidermolysis Bullosa severity score (BEBs), Instrument for Scoring Clinical Outcomes of Research for Epidermolysis Bullosa (iscorEB) and Epidermolysis Bullosa Disease Activity and Scarring Index (EBDASI), were administered to EB patients/their parents in the presence of an expert. This was followed by validity and correlation studies. Results: Fifty-four patients were recruited (19-females, 35-males; median age 5 years, range 0.025–36 years and 12 patients with an age >13 years). The parents answered the questions for 42 patients (age <13 years). Dystrophic epidermolysis bullosa was diagnosed in 32 (59.2%) patients (dominant dystrophic epidermolysis bullosa [DDEB]-19 [35.2%] and recessive dystrophic epidermolysis bullosa [RDEB]-13 [24.1%]). Junctional epidermolysis bullosa (JEB) and epidermolysis bullosa simplex (EBS) were each diagnosed in 11 (20.4%) patients. The mean ± standard deviation (SD) of QoLEB-Hin score of all epidermolysis bullosa patients was 11.3 ± 7.6 (range 0–28; median and interquartile range [IQR], 10, 10) and reflected an overall moderate degree of affliction on QoL of patients. Mean ± SD of QoLEB-Hin scores for EBS, JEB, DDEB and RDEB were 5.4 ± 3.7 (range, 1–13; median and IQR, 6, 6), 11 ± 6.2 (range, 1–22; median and IQR, 10, 6), 9 ± 5.7 (range, 0–19; median and IQR, 10, 10) and 20.1 ± 6.4 (range, 12–28; median and IQR, 19, 12.5), respectively (P < 0.001, Kruskal–Wallis analysis of variance). Cronbach’s alpha coefficient of 0.946 was obtained for all items indicating excellent internal consistency and reliability. Mean sample adequacy was 0.91; absolute fit based off diagonal values was 0.99; indices root mean square error of approximation and root mean square residual were 0.04 and 0.05, respectively, and Tucker Lewis index was >1 indicating overfit. The mean time taken to complete the questionnaire was 6.1 min (range, 6–8 min). QoLEB-Hin correlated significantly (P < 0.001) with BEBs (ρ = 0.79), iscorEB (ρ= 0.63) and EBDASI (ρ = 0.77). Three multiple linear regression models were used to ascertain the strength of relationship between QoL-Hin, and BEBs, iSCOREB and EBDASI, respectively, after adjusting for age, gender and disease subtype. The EBDASI clinical score accounted for approximately 74% (R2 = 0.736, P < 0.001) of the variability in QOL-Hin, as compared to 73% and 55% by BEBs (R2 = 0.731, P < 0.001) and iscorEB (R2 = 0.545, P < 0.001), respectively. Limitations: Parents filled out the questionnaires for many patients and probably led to an overall moderate degree of affliction of QoL. Comparison with Dermatology Life Quality Index and other QoL scores were not done in this study. Furthermore, the scoring was done at one point in time, and test-retest measurements could not be performed. Conclusion: This study validated QoLEB-Hin in an Indian population finding an overall moderate reduction in QoL due to EB. Maximally affected QoL was seen in patients with RDEB. Furthermore, QoLEB-Hin had a variable positive correlation and association with all clinical severity assessment scores.

Kualitas Hidup Pasien Tuberkulosis Paru yang Mengalami Stigma Diri (Quality of Life Pulmonary Tuberculosis Patients With Self Stigma))

2019 ◽  
Vol 3 (2) ◽  
pp. 17-27
Author(s):  
Yunita Sari
Keyword(s):  
Quality Of Life ◽  
Pulmonary Tuberculosis ◽  
Descriptive Study ◽  
Negative Influence ◽  
Questionnaire Data ◽  
Average Quality ◽  
Tuberculosis Patients ◽  
Pulmonary Tb ◽  
Life Score

Pulmonary tuberculosis (TB) is a chronic disease that can bring about the sufferer's self-stigma and also affect his quality of life. A number of studies report that living with TB has a negative influence on the quality of life of sufferers even with or without self-stigma. The purpose of this study was to identify the quality of life of TB patients who experienced self-stigma. This research is a descriptive study, sample were 31 pulmonary TB patients. Data was collected using a questionnaire. Data analyzed by using frequency distribution and percentage. The researcher first screened TB patients who experienced self-stigma. The results showed that 25 people (80.64%) respondents experienced mild self-stigma. A total of 9 respondents (36%) had a quality of life score in the good category and as many as 16 respondents (64%) had enough category with an average quality of life score is 56.57. While respondents who had moderate self-stigma were 6 people (19.36%) with a good quality of life score was 1 person (16.67%) and enough category quality of life score were 5 people (83.33%) with an average quality of life score is 49.92.

scholarly journals Tu1228 – Achalasia Quality of Life Score and Eckardt Score: A Comparison for the Assessment of Clinical Improvement Post Treatment for Achalasia

2019 ◽  
Vol 156 (6) ◽  
pp. S-994
Author(s):  
Samuel O. Slone ◽  
Joel E. Richter ◽  
Vic Velanovich ◽  
John W. Jacobs ◽  
Ambuj Kumar
Keyword(s):  
Quality Of Life ◽  
Clinical Improvement ◽  
Post Treatment ◽  
Life Score ◽  
Eckardt Score

scholarly journals Quality of life in Hungarian patients with cystic fibrosis

2013 ◽  
Vol 154 (20) ◽  
pp. 784-791 ◽  
Author(s):  
Réka Bodnár ◽  
Klára Holics ◽  
Rita Ujhelyi ◽  
László Kádár ◽  
Lajos Kovács ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Self Report ◽  
Clinical Severity ◽  
Proxy Report ◽  
Parent Proxy Report ◽  
Multisystemic Disease ◽  
Cystic Fibrosis Questionnaire ◽  
Parent Proxy

Introduction: Cystic fibrosis is a progressive multisystemic disease which affects the quality of life of patients. Aim: The aim of the study was to evaluate quality of life in Hungarian patients with cystic fibrosis. Methods: Validated Hungarian translation of The Cystic Fibrosis Questionnaire – Revised was used to measure quality of life. Clinical severity was determined on the basis of Shwachman–Kulczycki score. Lung function was measured using spirometry. Results: 59 patients were included from five centres in Hungary. The relationships between 8–13 year-old children self-report and parent proxy report was 0.77 (p<0.001) in physical functioning, 0.07 (p<0.001) in emotional functioning, 0.51 (p<0.001) in eating, 0.21 (p<0.001) in treatment burden, 0.54 (p<0.001) in body image, 0.49 (p<0.001) in respiratory symptoms and 0.40 (p<0.001) in digestive symptoms domains. Conclusions: In contrast to physical domains weak correlations were observed between answers obtained from children and their parents in psychosocial domains. The perception of both patients and their parents should be assessed when measuring quality of life in paediatric patients with cystic fibrosis. Orv. Hetil., 2013, 154, 784–791.

scholarly journals Quality of life and its associated factors among epileptic patients attending public hospitals in North Wollo Zone, Northeast Ethiopia: A cross-sectional study

PLoS ONE ◽  
2021 ◽  
Vol 16 (2) ◽  
pp. e0247336
Author(s):  
Ayelign Mengesha Kassie ◽  
Biruk Beletew Abate ◽  
Mesfin Wudu Kassaw ◽  
Addisu Getie ◽  
Adam Wondmieneh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Public Hospitals ◽  
Evil Spirit ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Life Score ◽  
Epileptic Patients ◽  
Related Quality ◽  
Health Related

Background Epilepsy is thought to be caused by witchcraft, evil spirit, and God’s punishment for sins in many developing countries. As a result, people with epilepsy and their families usually suffer from stigma, discrimination, depression, and other psychiatric problems. Thus, this study aimed to assess the quality of life and its associated factors among epileptic patients attending public hospitals in North Wollo Zone, Northeast Ethiopia. Methods An institution-based cross-sectional study design was employed in this study. A simple random sampling technique was utilized. Health-related quality of life was measured based on the total score of the Quality of Life in Epilepsy Inventory (QOLIE-31) instrument. Data were entered into Epi-data 3.1 statistical package and exported to SPSS Version 20 for further analysis. Linear regression models were used to assess the relationship between quality of life and the independent variables. Statistically significant values were declared at a P-value of < 0.05. Results A total of 395 patients participated in the study making the response rate 98.5%. The mean age of the participants was 32.39 ±10.71 years. More than half, 199 (50.4%) of epileptic patients had an overall weighted average health related quality of life score of mean and above. Male sex (B = 4.34, 95%CI, 0.41, 8.27, P = 0.03), higher educational status (B = 7.18, 95%CI, 1.39, 13.00, P = 0.015) and age at onset of epilepsy (B = 0.237, 95%CI, 0.02, 0.45, P = 0.035) were associated with increased health related quality of life score. On the other hand, family history of epilepsy (B = -4.78, 95%CI,-9.24,-0.33, P = 0.035), uncontrolled seizure (B = -11.08, 95%CI,-15.11,-7.05, P < 0.001), more than 5 pre-treatment number of seizures (B = -4.86, 95%CI,-8.91,-0.81, P = 0.019), poor drug adherence (B = -11.65, 95%CI,-16.06,-7.23, P < 0.001), having moderate (B = -4.526, 95%CI,-8.59,-0.46, P = 0.029) to sever (B = -12.84, 95%CI,-18.30,-7.37, P < 0.001) anxiety and depression, believing that epilepsy is caused by evil spirit (B = -7.04, 95%CI,-11.46,-2.61, P = 0.002), drinking alcohol (B = -5.42, 95%CI,-10.72,-0.13, P = 0.045), and having other co-morbidities (B = -9.35, 95%CI,-14.35,-4.36, P < 0.001) were significantly negatively associated with the health related quality of life score among epileptic patients. Conclusions Only around half of the epileptic patients have a good health-related quality of life. In addition, multiple variables including family history, uncontrolled seizure, and poor drug adherence were associated with quality of life among epileptic patients. Hence, targeting these variables in epilepsy management is recommended.

scholarly journals Psychosocial Impact of Acne: A Community Based Cross Sectional Study

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Mohammad Sarwar Mir
Keyword(s):  
Quality Of Life ◽  
Social Impact ◽  
Acne Vulgaris ◽  
Clinical Severity ◽  
Age Group ◽  
Cross Sectional ◽  
Severe Acne ◽  
Number Of Patients ◽  
The Impact

Background: It is well-known that acne vulgaris is a common malady of adolescence and is easily recognized Objective: To evaluate the level of impact among acne patients on their quality of life. Methods: A total of 200 patients studied. Acne severity was graded using Global Acne Grading System (GAGS) after the clinical diagnosis. All the patients went through self-administered questionnaire of Cardiff Acne Disability Index (CADI) to fill out, to assess the reflection of patients’ experiences and perceptions. Result: Out of 200 patients, 114(57.0%) were females and 86(43.0%) were males. The maximum number of patients was in the age group of 16-20 years (142/200, 71%). Out of total 86 males, 50 (58.3%) had moderate to severe acne, whereas 62(54.38%) females had such a severe acne. 50.87% (58/114) of females had high CADI scores in comparison to only 27.9(24/86) of males. The impact on quality of life was more in the age-group of 21-30 years even though in this age group clinical severity of acne was mild to moderate only. Conclusion: Study found that individuals with acne had profound emotional, as well as, social impact on their quality of life.

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