Quality of life of children and adolescents with visual impairment

2018 ◽  
Vol 36 (1) ◽  
pp. 42-56 ◽  
Author(s):  
Olivete Oliveira ◽  
Célia Ribeiro ◽  
Cristina Simões ◽  
Paulo Pereira

The conceptual framework of quality of life (QOL) have received considerable attention within students with visual impairment. The main purpose of this study was to analyse the QOL of children and adolescents with low vision and blindness. Data were collected from 18 children and adolescents, and respective parents ( n = 18). QOL was assessed by the KIDSCREEN 52 questionnaire. Cronbach’s alpha and correlations were calculated to examine the psychometric properties of the scale in the visual impairment field. The scale showed suitable internal consistency and construct validity. The findings highlighted that the mean scores were higher in participants with low vision, in male group, and in children. Furthermore, children and adolescents reported higher scores regarding their QOL than their parents. The results emphasized the importance of collecting information from the person about his or her own life to know the personal outcomes, as well as the perception of their parents.

2019 ◽  
pp. 195-207

Background: Autism spectrum disorder is characterized in part by atypical behavior in the communication, social, and visual domains. Success in vision therapy is judged not only by changes in optometric findings, but through improvement in quality of life involving communication, social behavior and visual behavior. It would therefore be beneficial to have a validated questionnaire to assess parent reported quality of life pre and post vision therapy specific to patients with autism spectrum disorder. To our knowledge, a questionnaire of this nature has not been previously published in the literature. Methods: Questionnaire items were generated through surveying medical literature based on symptoms in three different categories: visual behavior, social behavior and communication. A pool of 34 questions was developed initially and then with thorough discussion with other experts, a 20-point questionnaire was developed with each item reflected in the construct concept. A draft of 20 questions was then sent to 10 subject experts with clinical experience in the field for more than 20 years, to review the pooled items. Validity and reliability was established prior to assessing the psychometric properties of the ASD/QOL-VT. Prospective observational study was conducted for a duration of 18 months. The study included individuals undergoing vision therapy in the age range of 3 to 15 years who had been diagnosed with ASD. The questionnaire was administered to parents of these children prior to the start of vision therapy. All subjects completed a minimum of 60 vision therapy sessions. The questionnaire was readministered after completing 60 sessions of vision therapy. Results: Cronbach’s alpha value for this questionnaire was 0.93, which reflected very good internal consistency. Factorial analysis yielded four factors with an Eigen value exceeding 1.0 which accounted for 68% variation in the model. The Cronbach alpha value for subscales identified by factorial analysis is 0.97 indicating excellent internal reliability. The mean pre vision therapy social behavior, communication and visual behavior score was 12.0±3.21, 17.07±4.57 and 26.97±6.41 respectively. The mean post vision therapy scores for social behavior, communication and visual behavior was 8.27±4.16, 11.33±5.27 and 17.93±6.52 respectively. On paired t test, the mean difference in score was statistically significant with P<0.001 in all three subcategories. Conclusions: Our study presents the development of a valid and reliable parent questionnaire, the ASD/QOL-VT, that judges communication, social behavior, and visual behavior in autism. Results of the study conducted indicate that vision therapy can result in significant improvements in the quality of life of patients with ASD as judged by their parents. This is evidenced by statistically significant changes in psychometric properties of the ASD/QOL-VT in social behavior, communication and visual behavior.


2021 ◽  
Vol 11 (7) ◽  
pp. 924
Author(s):  
Claudia B. Pratesi ◽  
Alessandra Baeza Garcia ◽  
Riccardo Pratesi ◽  
Lenora Gandolfi ◽  
Mariana Hecht ◽  
...  

Studies have shown that children and adolescents with autism and their relatives present a high level of stress and more family problems, impacting parents’ and caregivers’ quality of life (QoL). Despite studies on this subject, there is no specific questionnaire to evaluate QoL in parents or caregivers of children and adolescents with an autistic spectrum disorder (ASD) in Brazil. Therefore, this study’s primary purpose was to develop and validate a specific questionnaire to evaluate QoL in these individuals. The study was performed using the following steps: development of the ASD Parent/caregiver QoL questionnaire (autistic spectrum disorder parent/caregiver quality of life—ASDPC-QoL), subjective evaluation, validation of the questionnaire by the Delphi method, assessment of internal consistency, responsiveness, and reliability of the ASLPC-QoL, and administration of the questionnaire to 881 Brazilian ASD caregivers or parents. ASDPC-QoL comprises 28 questions divided into four domains (social, concerns, physical and mental health) with good psychometric properties (reproducibility, reliability, internal consistency, responsiveness, and validity). Our data showed that worries and physical health were the domains with the lowest scores in ASDPCA-QoL. ASDPCA-QoL did not differ among gender and age of child considering the total and all domains. Older participants (≥41 y/o) presented the best scores for social and worries domains but did not differ in other domains and the total. Parents or caregivers of ASD children diagnosed for more than three years have better mental and physical health domains than those recently diagnosed (up to 1 year) but did not differ in the total and other domains. Individuals with a partner and with the highest educational level present the best score for the social domain. Employed individuals showed better scores than unemployed ones for all domains and the total, except for worries, which did not differ. It also occurred comparing the individuals that do not use antidepressants and the ones that use them. Assessing and better understanding the QoL of caregivers is highly relevant. By understanding the social, worries, physical, and emotional health domains of caregivers, it is possible to track harmful aspects, prevent and treat pathologies, in addition to assisting in the implementation of effective public policies.


2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Daren K. Heyland ◽  
J. Paige Pope ◽  
Xuran Jiang ◽  
Andrew G. Day

Abstract Background People are living longer than ever before. However, with living longer comes increased problems that negatively impact on quality of life and the quality of death. Tools are needed to help individuals assess whether they are practicing the best attitudes and behaviors that are associated with a future long life, high quality of life, high quality of death and a satisfying post-death legacy. The purpose of paper is to describe the process we used to develop a novel questionnaire (“Preparedness for the Future Questionnaire™ or Prep FQ”) and to define its psychometric properties. Methods Using a multi-step development procedure, items were generated, for the new questionnaire after which the psychometric properties were tested with a heterogeneous sample of 502 Canadians. Using an online polling panel, respondents were asked to complete demographic questions as well as the Prep-FQ, Global Rating of Life Satisfaction, the Keyes Psychological Well-Being scale and the Short-Form 12. Results The final version of the questionnaire contains 34 items in 8 distinct domains (“Medico-legal”, “Social”, “Psychological Well-being”, “Planning”, “Enrichment”, “Positive Health Behaviors”, “Negative Health Behaviors”, and “Late-life Planning”). We observed minimum missing data and good usage of all response options. The average overall Prep FQ score is 51.2 (SD = 13.3). The Cronbach alphas assessing internal reliability for the Prep FQ domains ranged from 0.33 to 0.88. The intra-class correlation coefficient (ICC) used to assess the test–retest reliability had an overall score of 0.87. For the purposes of establishing construct validity, all the pre-specified relationships between Prep FQ and the other questionnaires were met. Conclusion Analyses of this novel measure offered support for its face validity, construct validity, test–retest reliability, and internal consistency. With the development of this useful and valid scale, future research can utilize this measure to engage people in the process of comprehensively assessing and improving their state of preparedness for the future, tracking their progress along the way. Ultimately, this program of research aims to improve the quality and quantity of peoples live by helping them ‘think ahead’ and ‘plan ahead’ on the aspects of their daily life that matter to their future.


Author(s):  
Silva Hovsepian ◽  
Mostafa Qorbani ◽  
Mohammad Esmaeil Motlagh ◽  
Aryan Madady ◽  
Morteza Mansourian ◽  
...  

AbstractBackground:Considering the role of different ethnical, cultural and geographical factors in health related quality of life (HRQOL) as well as the perception of different populations regarding various weight disorders, we aimed to evaluate the association between body mass index (BMI) and HRQOL in Iranian children and adolescents.Methods:This cross-sectional study was part of the Weight Disorders Survey of the CASPIAN-IV study. During this study, students aged 6–18 years from urban and rural areas of 30 provinces of Iran were selected. HRQOL of the students was evaluated by using the Persian version of the Pediatric Quality of Life inventory (PedsQL™ 4.0™ 4.0) Generic Core Scales. The mean of total HRQOL and its subscales were compared in underweight, normal weight, overweight and obese students.Results:The mean of total HRQOL, physical functioning and psychological functioning scores in the total population were 83.31, 84.25 and 82.79, respectively. The mean of the total HRQOL score and the psychosocial score were significantly lower in underweight students aged 6–12 years than in other groups (p<0.05). The mean of the total HRQOL score and psychosocial score were significantly lower in obese students aged 13–18 years than in other groups (p<0.05). Overweight and obesity was negatively associated with total HRQOL, psychosocial and school functioning subscales (p<0.05). There was a significant negative association between emotional functioning and obesity (p<0.05).Conclusions:The findings or this study support the importance of personal perception and cultural norm roles in HRQOL. Given the association between weight disorders and psychosocial health, it is suggested that social and cultural factors have a more crucial role in the HRQOL of children and adolescents.


2019 ◽  
Vol 56 (9) ◽  
pp. 1195-1205 ◽  
Author(s):  
Rafael Denadai ◽  
Cassio Eduardo Raposo-Amaral ◽  
Anelise Sabbag ◽  
Rafael Andrade Ribeiro ◽  
Celso Luiz Buzzo ◽  
...  

Objective: To test the Brazilian Portuguese velopharyngeal insufficiency (VPI) Effects on Life Outcome (VELO) instrument for reliability and validity. Design: Cross-sectional methodological study. Setting: Tertiary craniofacial medical center. Participants: Participants with VPI (VPI group, n = 60), with cleft and without VPI (no VPI/cleft group, n = 60), and with no cleft nor VPI (no VPI/no cleft group, n = 60) and their parents (n = 180). Interventions: All patients with VPI 8+ years old and their parents completed the Brazilian–Portuguese VELO instrument and other questionnaires (Pediatric Quality of Life Inventory4.0, PedsQL4.0; Pediatric Voice-Related Quality of Life, PVRQOL; and Intelligibility in Context Scale, ICS) at baseline; patients with VPI and their parents completed the VELO instrument again 2 weeks later. Main Outcome Measures: The VELO instrument was tested for internal consistency, test–retest reliability, discriminant validity (participants with VPI against participants with no VPI), concurrent validity against other questionnaires, criterion validity against hypernasality severity, and construct validity against nasal air emission and overall velopharyngeal competence (speech construct) and velopharyngeal gap (anatomic construct). Results: The VELO had excellent internal consistency (Cronbach α 0.99 for parents and 0.98 for participants with VPI) and test–retest reliability (all intraclass correlation coefficient > 0.87). The VELO discriminated well between VPI group and unaffected groups (all P < .05). The VELO was significantly correlated with the PedsQL4.0, PVRQOL, and ICS (– r > 0.75; P < .001). The VELO met criterion validity, speech construct validity, and anatomic construct validity ( r > 0.7; P < .001). Conclusions: The Brazilian-Portuguese VELO instrument demonstrated reliability (internal consistency and test–retest) and validity (discriminant, concurrent, criterion, and construct).


2017 ◽  
Vol 54 (4) ◽  
pp. 344-348 ◽  
Author(s):  
Danusa ROSSI ◽  
Lucas Homercher GALANT ◽  
Claudio Augusto MARRONI

ABSTRACT BACKGROUND: Fatigue is a common complaint in cirrhotic patients and may be considered a debilitating symptom with negative impact on quality of life. Research on its etiology and treatment has been hampered by the lack of relevant and reproducible measures of fatigue. OBJECTIVE: To evaluate the psychometric properties of the Fatigue Severity Scale (FSS) in cirrhotic patients and to correlate with depressive symptomatology and quality of life. METHODS: Cross-sectional study with a convenience sample of 106 cirrhotic patients, aged between 18 and 70 years, both genders, literate, pre and post liver transplantation in outpatient follow-up. Internal consistency, reproducibility, discriminant validity, criterion validity, construct validity, responsiveness criterion, depressive symptomatology and quality of life were evaluated through questionnaires between January and October 2015. RESULTS: The mean age was 54.75±9.9 years, 65.1% male and 32.1% of the sample had cirrhosis due to hepatitis C virus. The mean FSS score was 4.74±1.64. Cronbach’s alpha was 0.93, and the Intraclass Correlation Coefficient was 0.905 (95% CI: 0.813-0.952). For discriminant validity, FSS differentiated scores from different groups (P=0.009) and presented a correlation with the Modified Fatigue Impact Scale (r=0.606, P=0.002). FSS correlated significantly and positively with depressive symptomatology and correlated negatively with the SF-36 domains for construct validity. For responsiveness, no significant changes were observed in the fatigue scores in the pre and post-liver transplantation periods (P=0.327). CONCLUSION: FSS showed good psychometric performance in the evaluation of fatigue in patients with cirrhosis. Fatigue presented a strong correlation with depressive symptomatology and quality of life.


Author(s):  
Restu Nur Hasanah Haris ◽  
Rahmat Makmur ◽  
Tri Murti Andayani ◽  
Susi Ari Kristina

Quality of life (HRQoL) is a measure of a person's health in physical, spiritual, and emotional, and role functions in the society. Measurement of quality of life (HRQoL) is an important thing to understand and evaluate. Measurements are carried out not only on patients but also on the general population with the use of specific or generic instruments. The instrument used requires a psychometric properties test to ensure its validity and reliability. This article aims to conduct a systematic review of the psychometric properties of quality of life (HRQoL) instruments in the general population. Articles were collected in December 1st to 5th, 2018, from Pubmed and Google Scholar. The assessment was carried out using the checklist properties according to the cohen criteria and included the content validity, construct validity, internal consistency reliability, test-retest, ceiling effect and the level of credibility of the instruments. Among 80 articles obtained there were 24 articles that fulfilled the inclusion criteria. Short Form-36 (SF-36) instrument is the most widely used instrument in measuring the quality of life in the general population (26.6%). Some instruments have not been tested according to the criteria, while almost all instruments show a good level of validation of construct validity using convergent and discriminat validity with cronbach alpha values > 0.7. Test-retest reliability provides a good correlation. Some instruments show a ceiling effect. According to the assessment, the SF-36, SF-6D, EQ-5D, SF-12 and PedsQoL instruments are considered as established instruments. Further validation testing is needed to provide and support the measurement of subsequent quality of life (HRQoL) instruments.


2020 ◽  
Vol 54 (3) ◽  
Author(s):  
Paula Karina N. Gonzales-Carait ◽  
Rowena F. Genuino ◽  
Katrina Angela Z. Reyes ◽  
Belen L. Dofitas

Background. Skin diseases that are longstanding or highly symptomatic can have devastating consequences in the quality of life of children. There is a need to have a validated Filipino translation of a dermatology quality of life tool for young patients with skin diseases. Objectives. To assess the validity and reliability of the Indeks ng Kalidad ng Buhay Pang-dermatolohiya ng mga Bata (IKPaB), a Filipino translation of the Children’s Dermatology Life Quality Index (CDLQI). Methods. This cross-sectional study was conducted among children aged 4 to 16 years at a tertiary hospital outpatient department. The IKPaB was pretested and revised using focus group discussion until it was approved by the original developers for validation. Face validity was determined through cognitive debriefing interviews. Construct validity was determined by comparing IKPaB scores of participants with skin disease and without skin disease using Mann-Whitney U test. Criterion validity was determined by comparing IKPaB with a validated Filipino-translated PedsQL as the criterion, using Spearman rank correlation. Internal consistency reliability was determined using Cronbach’s coefficient. Multiple regression was used to correlate age, sex and disease duration. Results. The IKPaB was assessed to be comprehensible, clear, and culturally appropriate. Among 288 participants, it showed satisfactory construct validity (U = 8849, Z= 0.87; P = 0.89) and internal consistency reliability (α = 0.89), with a negative but weak correlation with the PedsQL® (rho= -0.300, P = 0.000). Conclusion. The IKPaB is a valid and reliable Filipino translation of CDLQI. We recommend further validation for use in clinical practice and research.


2003 ◽  
Vol 9 (6) ◽  
pp. 621-626 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Deborah M Miller ◽  
Gordon J Chelune ◽  
Jeffrey A Cohen

Multiple sclerosis (MS) has important effects on quality of life but it is unknown how cognitive impairment affects the ability to assess or report this. O ur objective was to determine whether cognitive impairment negatively affects the construct validity and the reliability of the Multiple Sclerosis Q uality of Life Inventory (MSQLI). A neuropsychological test batter y and the Multiple Sclerosis Functional C omposite (MSFC) were administered to a sample of 136 patients referred for cognitive testing by their neurologists. A ge, sex, educatio n and ethnicity-adjusted T scores were calculated for each cognitive variable. C ognitive impairment was defined as any T score less than the fifth percentile. The MSQ LI was administered prior to neuropsychological testing and readministered one to four weeks later. C orrelations between the MSFC and the SF-36 were determined and compared between the cognitively impaired and unimpaired groups as the main test of construct validity. Test -retest and internal consistency reliability of each of the scales were compared for the impaired and unimpaired groups. Seventy-six (56%) patients were cognitively impaired. C onstruct validity and internal consistency reliability did not differ between the cognitively impaired and unimpaired groups. Test -retest reliability was lower for the bladder and vision scales in the impaired group, but remained acceptable for the bladder scale (r >0.7). C ognitive impairment, a common MS manifestation, does not appear to reduce the reliability or validity of the MSQ LI as a patient self-report measure of health status and quality of life.


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