scholarly journals A Cross-Cultural Validation of a Quality of Life Measure Using the Simple Measure of the Impact of Lupus Erythematosus in Youngsters (SMILEY©) among Filipino Pediatric Lupus Patients

2016 ◽  
Vol 9 (1) ◽  
pp. 60-66
Author(s):  
Jemely M. Punzalan ◽  
Beatrice B. Canonigo ◽  
Maria Rosario F. Cabansag ◽  
Dennis S. Flores ◽  
Paul Joseph T. Galutira ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lupus Erythematosus ◽  
Convergent Validity ◽  
Pediatric Lupus ◽  
The Mean ◽  
Test Retest Reliability ◽  
The Impact ◽  
Bilingual Individual ◽  
Pediatric Sle

Background: Systemic lupus erythematosus (SLE) is one of the most common autoimmune disorders in women of childbearing age. Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY) is the only health related quality of life (HRQOL) tool for pediatric SLE, which has been translated into many languages but is not yet available in Filipino. Objective: The primary objective of this study was to develop a Filipino translation of the SMILEY and to test the validity and reliability of this translation. Methodology: The SMILEY was translated into Filipino by a bilingual individual and back-translated by another bilingual individual blinded from the original English version. The translation was evaluated for content validity by a panel of experts and subjected to pilot testing. In the pilot, the SMILEY, together with the previously validated Pediatric Quality of Life Inventory (PEDSQL) 4.0 Generic Core Scale were administered to pediatric lupus patients and their parents on two separate occasions: a baseline and a re-test seven to fourteen days apart. Tests for convergent validity, internal consistency, and test-retest reliability were performed. Results: A total of fifty children and their parents were recruited. The mean age was 15.38±2.62 years (range 8-18 years), mean education level was high school. The mean duration of SLE was 28 months (range 1-81 months). Subjects found the questionnaires to be relevant, easy to understand and to answer. The validity of the SMILEY was demonstrated in terms of content validity, convergent validity, internal consistency, and test-retest reliability. Age, socioeconomic status and educational attainment did not significantly impact the scores. The difference between scores reported by children and parents was significant with SMILEY Total (p=0.0214), effect on Social Life (p=0.0000), and PEDSQL Physical Function (p=0.0460), with children reporting higher scores for these domains compared to their parents. Conclusion: SMILEY is a brief, easy to understand, valid and reliable tool for assessing specific HRQOL in pediatric SLE. It will be useful in providing better care, understanding and may offer critical information regarding the effect of SLE in the quality of life of our pediatric lupus patients. It will help physician understands the needs of their patient not only on treatment of the specific disease but as well as the impact of the treatment on their daily lives.

The Japanese LupusPRO: A cross-cultural validation of an outcome measure for lupus

Lupus ◽  
2016 ◽  
Vol 26 (8) ◽  
pp. 849-856 ◽  
Author(s):  
M Inoue ◽  
K Shiozawa ◽  
R Yoshihara ◽  
T Yamane ◽  
Y Shima ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Convergent Validity ◽  
Short Form ◽  
Internal Consistency Reliability ◽  
Systemic Lupus ◽  
Retest Reliability ◽  
Test Retest Reliability

Objective This study aimed to validate the Japanese version of the LupusPRO questionnaire for use with systemic lupus erythematosus patients. Methods Participants were 205 lupus patients recruited from three rheumatology centers in Japan. Demographic data were collected and quality of life was assessed using the LupusPRO and the Short Form Health Survey-12. Disease activity was evaluated by physicians using the Systemic Lupus Erythematosus Activity Index. Some participants completed questionnaires 10–14 days after the first survey. Internal consistency reliability, test-retest reliability, content validity and convergent validity were examined, and confirmatory factor analysis was performed. Results Participants’ mean age was 47.8 ± 13.6 years. Older participants scored lower on physical quality of life and higher on coping than younger participants. The LupusPRO showed satisfactory test-retest reliability ( n = 111). Test-retest reliability was lower for the mental and social aspects of quality of life, indicating fluctuations in quality of life during the two-week interval. Internal consistency reliability was good and convergent validity with the corresponding domains of the Short Form Health Survey-12 was satisfactory. Confirmatory factor analysis showed a good model fit. Conclusion The Japanese LupusPRO is a reliable and valid measure to evaluate treatment interventions for systemic lupus erythematosus.

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.

scholarly journals Impact of dental caries on oral health related quality of life among preschool children: perceptions of parents

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Mina Pakkhesal ◽  
Elham Riyahi ◽  
AliAkbar Naghavi Alhosseini ◽  
Parisa Amdjadi ◽  
Nasser Behnampour
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Dental Caries ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Dmft Index ◽  
The Mean ◽  
The Impact

Abstract Background Childhood dental caries can affect the children’s and their parents’ oral health-related quality of life. The aim of the present study was to evaluate the impact of oral and dental health conditions on the oral health-related quality of life in preschool children and their parents. Methods In this descriptive-analytical cross-sectional study, samples were selected from children 3 to 6 years old enrolled in licensed kindergartens using "proportional allocation" sampling. Then, the parents of the children were asked to complete the Early Childhood Oral Health Impact Scale (ECOHIS). Results In this study, 350 children aged 3 to 6 years were evaluated with a mean age of 4.73 years. The mean dmft index (decayed, missed, and filled teeth) was 3.94 ± 4.17. The mean score of oral health-related quality of life was 11.88 ± 6.9, which 9.36 ± 5.02 belongs to the impact on children and 2.52 ± 3.20 to parents' impact. Conclusions The mean score of ECOHIS increased with the dmft index increase in children, indicating a significant relationship between the dmft and ECOHIS score. These outcomes can be used as proper resources to develop preventive policies and promote oral health in young children.

scholarly journals Dermatoses in the hospital and their impact on quality of life

2021 ◽  
Vol 12 (4) ◽  
pp. 462-463
Author(s):  
Kaoutar Sof ◽  
Soraya Aouali ◽  
Sara Bensalem
Keyword(s):  
Quality Of Life ◽  
Alopecia Areata ◽  
Drug Eruption ◽  
Skin Tumors ◽  
Severe Psoriasis ◽  
Dermatology Department ◽  
Verneuil’S Disease ◽  
The Mean ◽  
The Impact

Sir, Dermatological pathologies may be responsible for the creation of a real handicap, affecting the patient’s self-esteem and their professional and social life. The aim of this study was to assess the impact of diseases on the quality of life of patients hospitalized at the dermatology department. The following was a retrospective study that included patients over eighteen years of age, hospitalized at the dermatology department of Hospital Mohammed VI in Oujda from January 2018 through December 2019. The Arabic version of the validated DLQI was used for all patients [1]. A total of 294 patients were collected, with a mean age of 53.95 years and a male-to-female ratio of 0.85. The most frequent reasons for hospitalization were infectious dermo-hypodermitis (n = 51), autoimmune bullous dermatosis (n = 23), severe drug eruption (n = 20), genodermatosis (n = 17), melanocytic (n = 9) and non-melanocytic skin tumors (n = 17), severe psoriasis (n = 17), cutaneous lymphoma (n = 11), alopecia areata (n = 10), dermatomyositis (n = 8), and Verneuil’s disease (n = 5). The DLQI was impossible to calculate in eleven patients. The mean DLQI in all patients was 10.20, corresponding to a moderate effect on quality of life. The mean DLQI was as follows: Verneuil’s disease at 17.4, severe psoriasis at 16.6, dermatomyositis at 14.42, genodermatosis at 12.37, cutaneous lymphoma at 11.45, severe drug eruption at 11, alopecia areata at 10.5, AIBD at 9.67, skin tumors at 7.76, and infectious dermo-hypodermitis at 7.52. The DLQI was the first index measuring quality of life in dermatology and is still widely used today[2]. The number of publications concerning the impact of dermatological pathologies on quality of life has increased in recent years [3]. Our results showed that the DLQI was higher in patients with Verneuil’s disease, severe psoriasis, and dermatomyositis. These results agree with the data of the literature, many publications have shown that psoriasis seriously impaired the quality of life and was responsible of social anxiety in patients [4]. Verneuil’s disease is also responsible of a significant impairment on quality of life mainly due to the sexual disorders caused by this pathology [5]. Another study on dermatomyositis showed that there is a significant correlation between the severity of skin signs and the quality of life of patients [6]. Dermatological pathologies are distinguished from other pathologies by their displaying character, which is responsible for a significant impact on the patient’s quality of life. The management of dermatology patients requires psychological support in addition to conventional therapy. However, these pathologies are still not recognized as long-term illnesses in Morocco.

The Social and Psychological Impact of Superficial Dermatophytic Infection using Dlqi and Ghq-12: A Cross-Sectional Study in 174 Patients at a Tertiary Care Centre in Southern-East Rajasthan

2021 ◽  
pp. 1-6
Author(s):  
Shivani Saini ◽  
◽  
Agarwal Shail ◽  
Jain Manish ◽  
Yadav Devendra ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Psychological Impact ◽  
Cross Sectional Study ◽  
World Population ◽  
Sectional Study ◽  
Cross Sectional ◽  
Number Of Patients ◽  
The Mean ◽  
The Impact

Background: Dermatophytosis is a common fungal infection affecting 20-25% of the world population. Aims: Our study was aimed to assess its impact on health-related quality of life(QoL), mental health, and various variables. Materials and Methods: A cross-sectional study was done from April 2019 to September 2019 on 174 patients of dermatophytosis of aged more than 16 years with their informed consent. The impact of infection on the quality of life was assessed by using the Dermatology life quality index questionnaire and General health questionnaire-12 was used to assess psychological impact. A visual analogue scale was used to assess the severity of pruritus. Appropriate statistical tests were applied. Results: Males to females ratio was 1.4:1. The age group of 21-30 was having the highest number of patients with the mean age of 27.8±9.97. Most patients had BSA under 10%. The mean value of DLQI and GHQ-12 were found 15.989±7.407 and 2.8563±2.8964, respectively. We found that dermatophytosis had a very large effect on the quality of life as the maximum number of patients(39%) were within this category. The “work and school” part in the questionnaire gained maximum importance(52.8%). The mean VAS score was 6±2.733 with most patients(32.7%) had moderate itching. We found a positive correlation between VAS and DLQI, VAS and GHQ-12, DLQI, and GHQ-12 with the statistical significance. Conclusion: In our study dermatophytosis affected the quality of life as well as the psychological health of patients. Therefore proper treatment of superficial dermatophtytosis is essential to prevent it from further complications

KUALITAS HIDUP REMAJA YANG MENGALAMI DISMENORE DI SMK NEGERI 2 SUMEDANG

2018 ◽  
Vol 4 (2) ◽  
pp. 129
Author(s):  
Nadya Puspita Dewi ◽  
Tetti Solehati ◽  
Nur Oktavia Hidayati
Keyword(s):  
Quality Of Life ◽  
Sampling Technique ◽  
Mean Value ◽  
Social Dimension ◽  
Validity And Reliability ◽  
School Activities ◽  
Emotional Dimension ◽  
The Mean ◽  
The Impact

Dysmenorrhea is a pain before or during the menstrual period. The impact of dysmenorrhea are the disruption on physical function, emotional, social and school activities and disruption of quality of life. The study purpose is to detect the quality of life of adolescents with dysmenorrhea.The research method was a quantitative descriptive with total sampling technique to 195 students which selected using dysmenorrhea screening. The data were collected using the pediatric quality of life 4.0 generic module (PedsQL) teens report in Indonesian version which the validity and reliability have been tested. Analysis of data has been done to find out the mean value in each dimension and frequency distribution. The results showed that the mean value of the quality of life of adolescents with dysmenorrhea in general was 62,04 ± 8,15 and 51,8% was in the low. The mean value in physical dimension was 49,36 ± 9,19, emotional dimension was 57,62 ± 13,16, social dimension was 86,38 ± 13,28, and in the school dimension was 62,41 ± 14,77. The quality of life in high categories were in the emotional dimension (60,0%), social dimension (64,1%), and school dimension (60,5%). Meanwhile, the quality of life in low category was in the physical dimension (57,4%). It showed that the quality of life of adolescents with dysmenorrhea in SMK Negeri 2 Sumedang were low. It was recommended to the school and the health office in Sumedang district to provide the reproductive health education, specifically about the prevention and the treatment of dysmenorrhea on adolescents.  

scholarly journals Patient perspectives on the therapeutic profile of botulinum neurotoxin type A in cervical dystonia

2020 ◽  
Author(s):  
Cynthia Comella ◽  
Joaquim J. Ferreira ◽  
Emilie Pain ◽  
Marion Azoulai ◽  
Savary Om
Keyword(s):  
Quality Of Life ◽  
Cervical Dystonia ◽  
Botulinum Neurotoxin ◽  
Type A ◽  
Peak Effect ◽  
Botulinum Neurotoxin Type A ◽  
The Mean ◽  
The Impact ◽  
Therapeutic Profile

Abstract Background Botulinum neurotoxin type A (BoNT-A) is an effective pharmacological treatment for the management of cervical dystonia (CD) that requires repeated administration at variable intervals. We explored patient perceptions of the impact of CD and the waning of BoNT-A therapeutic effects. Methods An internet-based survey was conducted through Carenity, a global online patient community, from May to September 2019. Eligible respondents were adults with CD who had ≥ 2 previous BoNT-A injections. Results 209 respondents (81% females; mean age of 49.7 years) met the screening criteria. The mean BoNT-A injection frequency was 3.9 injections/year. The mean reported onset of BoNT-A therapeutic effect was 11.7 days and the time to peak effect was 4.5 weeks. Symptom re-emergence between injections was common (88%); the time from injection to symptom re-emergence was 73.6 days (~ 10.5 weeks). Treatment was not reported to completely abolish symptoms, even at peak effect. However, symptom severity was rated (0 = no symptoms; 10 = very strong symptoms) as lowest at the peak of treatment effects (mean scores ~ 3/10), increasing as the effects of treatment start waning (~ 5.5/10) and was strongest one day before the next session (~ 7–8/10). The impact of CD on quality of life followed the same ‘rollercoaster’ pattern. Conclusions This survey highlights the burden of CD symptoms, even in patients undergoing regular treatment. Symptom re-emergence is common and has significant impact on daily activities and quality of life. Greater awareness of the therapeutic profile of BoNT-A treatment should lead to better informed therapeutic discussions and planning.

scholarly journals The Impact of Belimumab and Rituximab on Health‐Related Quality of Life in Patients With Systemic Lupus Erythematosus

2019 ◽  
Vol 71 (6) ◽  
pp. 811-821 ◽  
Author(s):  
Ioannis Parodis ◽  
Angie H. Lopez Benavides ◽  
Agneta Zickert ◽  
Susanne Pettersson ◽  
Sonia Möller ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Health Related Quality ◽  
Systemic Lupus ◽  
Related Quality ◽  
Health Related ◽  
The Impact

scholarly journals The Impact of Urinary Incontinence on Quality of Life in Those Receiving Home Care Services

2018 ◽  
Vol 31 (1) ◽  
pp. 30-34
Author(s):  
Mahcube Cubukcu
Keyword(s):  
Quality Of Life ◽  
Urinary Incontinence ◽  
Home Care ◽  
Chronic Diseases ◽  
Short Form ◽  
Home Care Services ◽  
Care Services ◽  
The Mean ◽  
The Impact

This study aims to evaluate the impact of urinary incontinence on the quality of life in those receiving home care services and the factors that influence this. This cross-descriptive study was performed in 180 patients who were served from Home Care Services between 01 and 28 February 2018. An International Consultation on Incontinence Questionnaire–Short Form (ICIQ-SF) was implemented in person to those who gave their informed consent with orientation and cooperation. The mean age of a 180 patients was 74.40 ± 7.80 years (min = 18, max = 104), of which 55.2% were women. The mean ICIQ-SF score was found to be 12.42 ± 4.83 (min = 0, max = 21). The lowest points were given as responses to the question, “In your opinion, what amount of leakage do you experience?” The highest points, however, were given to the question of “How much does urinary leakage interfere with your everyday life?” It was seen that when quality of life is assessed with a visual analog scale within the ICIQ-SF, the quality of life for 66.6% of elderly individuals was affected moderately or significantly. The mean ICIQ-SF scores were higher in those with chronic diseases ( p < .005). Urinary Incontinence negatively affects quality of life to a moderate and significant degree in those receiving home care. The quality of life for those who have chronic diseases was worse. In this respect, there is a need to support patients in those receiving home care services.

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