scholarly journals 46MEASURING HEALTH RELATED QUALITY OF LIFE OF CARE HOME RESIDENTS, COMPARISON OF SELF-REPORT BY OLDER PEOPLE WITH CAPACITY TO CONSENT AND STAFF PROXIES USING EQ-5D-5L AND HOWRU

2018 ◽  
Vol 47 (suppl_3) ◽  
pp. iii14-iii17
Author(s):  
A Usman ◽  
S Lewis ◽  
K Hinsliff-Smith ◽  
A Long ◽  
G Housley ◽  
...  
BMJ Open ◽  
2018 ◽  
Vol 8 (8) ◽  
pp. e022127 ◽  
Author(s):  
Adeela Usman ◽  
Sarah Lewis ◽  
Kathryn Hinsliff-Smith ◽  
Annabelle Long ◽  
Gemma Housley ◽  
...  

IntroductionResearch into interventions to improve health and well-being for older people living in care homes is increasingly common. Health-related quality of life (HRQoL) is frequently used as an outcome measure, but collecting both self-reported and proxy HRQoL measures is challenging in this setting. This study will investigate the reliability of UK care home staff as proxy respondents for the EQ-5D-5L and HowRu measures.Methods and analysisThis is a prospective cohort study of a subpopulation of care home residents recruited to the larger Proactive Healthcare for Older People in Care Homes (PEACH) study. It will recruit residents ≥60 years across 24 care homes and not receiving short stay or respite care. The sample size is 160 participants. Resident and care home staff proxy EQ-5D-5L and HowRu responses will be collected monthly for 3 months. Weighted kappa statistics and intraclass correlation adjusted for clustering at the care home level will be used to measure agreement between resident and proxy responses. The extent to which staff variables (gender, age group, length of time caring, role, how well they know the resident, length of time working in care homes and in specialist gerontological practice) influence the level of agreement between self-reported and proxy responses will be considered using a multilevel mixed-effect regression model.Ethics and disseminationThe PEACH study protocol was reviewed by the UK Health Research Authority and University of Nottingham Research Ethics Committee and was determined to be a service development project. We will publish this study in a peer-reviewed journal with international readership and disseminate it through relevant national stakeholder networks and specialist societies.


2019 ◽  
Vol 48 (3) ◽  
pp. 407-413 ◽  
Author(s):  
Adeela Usman ◽  
Sarah Lewis ◽  
Kathryn Hinsliff-Smith ◽  
Annabelle Long ◽  
Gemma Housley ◽  
...  

MedPharmRes ◽  
2017 ◽  
Vol 1 (1) ◽  
pp. 9-14
Author(s):  
Tri Doan ◽  
Tuan Tran ◽  
Han Nguyen ◽  
◽  
◽  
...  

Purpose: This study aimed to translate and culturally adapt the self-report and parent-proxy Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL-25) into Vietnamese and to evaluate their reliability. Methods: Both English versions of the self-report and parent-proxy CHEQOL-25 were translated and culturally adapted into Vietnamese by using the Principles of Good Practice for the Translation and Cultural Adaptation Process. The Vietnamese versions were scored by 77 epileptic patients, who aged 8–15 years, and their parents/caregivers at neurology outpatient clinic of Children Hospital No. 2 – Ho Chi Minh City. Reliability of the questionnaires was determined by using Cronbach’s coefficient α and intra-class correlation coefficient (ICC). Results: Both Vietnamese versions of the self-report and parent-proxy CHEQOL-25 were shown to be consistent with the English ones, easy to understand for Vietnamese children and parents. Thus, no further modification was required. Cronbach’s α coefficient for each subscale of the Vietnamese version of the self-report and parent-proxy CHEQOL-25 was 0.65 to 0.86 and 0.83 to 0.86, respectively. The ICC for each subscale of the self-report and parent-proxy CHEQOL-25 was in the range of 0.61 to 0.86 and 0.77 to 0.98, respectively. Conclusion: The Vietnamese version of the self-report and parent-proxy CHEQOL-25 were the first questionnaires about quality of life of epileptic children in Vietnam. This Vietnamese version was shown to be reliable to assess the quality of life of children with epilepsy aged 8–15 years.


2014 ◽  
Vol 16 (2) ◽  
pp. 127-135 ◽  

Health-related quality of life (HRQoL) is a multidimensional concept that includes subjective reports of symptoms, side effects, functioning in multiple life domains, and general perceptions of life satisfaction and quality. Rather than estimating it from external observations, interview, or clinical assessment, it is best measured by direct query. Due to a perception that respondents may not be reliable or credible, there has been some reluctance to use self-report outcomes in psychiatry. More recently, and increasingly, HRQoL assessment through direct patient query has become common when evaluating a range of psychiatric, psychological, and social therapies. With few exceptions, psychiatric patients are credible and reliable reporters of this information. This article summarizes studies that highlight the development, validation, and application of HRQoL measures in psychiatry. Thoughtful application of these tools in psychiatric research can provide a much-needed patient perspective in the future of comparative effectiveness research, patient-centered outcomes research, and clinical care.


2021 ◽  
Author(s):  
Shinya Tsuzuki ◽  
Yusuke Miyazato ◽  
Mari Terada ◽  
Shinichiro Morioka ◽  
Norio Ohmagari ◽  
...  

AbstractBackgroundThe empirical basis for a quantitative assessment of the disease burden imposed by long-COVID is currently scant. We aimed to assess the disease burden caused by long-COVID in Japan.MethodsWe conducted a cross sectional self-report questionnaire survey. The questionnaire was mailed to 530 eligible patients, who were recovered from acute COVID-19 in April 2021. Answers were classified into two groups; participants who have no symptom and those who have any ongoing symptoms that lasted longer than four weeks at the time of the survey. We compared health-related quality of life scores estimated by the EQ-5D-3L questionnaire between these two groups after adjusting basic characteristics of the participants by propensity score matching.Results349 participants reported no symptoms and 108 reported any symptoms at the time of the survey. The participants who reported any symptoms showed a lower value on a Visual Analogue Scale (median 70 [IQR 60-80]) and on the EQ-5D-3L (median 0.81 [IQR 0.77-1.0]) than those reporting no symptoms (median 85 [IQR 75-90] and 1.0 [IQR 1.0-1.0], respectively). After adjusting for background characteristics, these trends did not change substantially (Visual Analog Scale: median 70 [IQR 60-80] vs 80 [IQR 77-90], EQ-5D-3L: median 0.81 [IQR 0.76-1.0] vs 1.0 [IQR 1.0-1.0]).ConclusionsDue to their long duration, long-COVID symptoms represent a substantial disease burden expressed in impact on health-related quality of life.Trial registrationNot applicable.


2013 ◽  
Vol 18 (4) ◽  
pp. 359-364 ◽  
Author(s):  
Susana Jiménez-Redondo ◽  
B. Beltran De Miguel ◽  
J. Gavidia Banegas ◽  
L. Guzman Mercedes ◽  
J. Gomez-Pavon ◽  
...  

2019 ◽  
Vol 29 (5) ◽  
pp. 936-942 ◽  
Author(s):  
Xuxi Zhang ◽  
Siok Swan Tan ◽  
Carmen Betsy Franse ◽  
Tamara Alhambra-Borrás ◽  
Estrella Durá-Ferrandis ◽  
...  

Abstract Background Studies on the association between frailty and health-related quality of life (HRQoL) are scarce and show contradictory results. This study aimed to evaluate the association between physical, psychological and social frailty and HRQoL among community-dwelling older people. Methods A cross-sectional study was performed with baseline data collected in 2015 from the Urban Health Centers Europe (UHCE) project in five European countries, the United Kingdom, Greece, Croatia, The Netherlands and Spain. A total of 2325 participants were included in the baseline measurements of the Urban Health Centers Europe project; 2167 participants (mean age = 79.7; SD=5.6) were included in the analyses after excluding participants with missing data. The Tilburg Frailty Indicator measured overall frailty as well as physical, psychological and social frailty. The 12-Item Short-Form Health Survey was used to measured physical and mental HRQoL. Results Regarding physical HRQoL, a large difference (d=1.29) between physically and not physically frail participants was observed. Regarding mental HRQoL, a large difference (d=1.20) between psychologically and not psychologically frail participants was observed. In the full model with all three domains of frailty and the covariates to explain physical HRQoL, physical (P <0.001) and social frailty (P <0.001) remained significant. In the full model to explain mental HRQoL, all three domains of frailty remained significant (P <0.001). Conclusion Physical frailty had the strongest association with physical HRQoL, and psychological frailty had the strongest association with mental HRQoL. The associations between social frailty and both physical and mental HRQoL remain significant when controlling for physical and psychological frailty.


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