scholarly journals Quality of life: Guidelines for the care of people with spina bifida

2020 ◽  
Vol 13 (4) ◽  
pp. 565-582
Author(s):  
Kathleen J. Sawin ◽  
Timothy J. Brei ◽  
Amy J. Houtrow
Keyword(s):  
Quality Of Life ◽  
Spina Bifida ◽  
Life Span ◽  
Future Research ◽  
Health Related Quality ◽  
Fourth Edition ◽  
Expert Opinions ◽  
Related Quality ◽  
Health Related

Quality of Life (QOL) and Health-Related Quality of Life (HRQOL) are important concepts across the life span for those with spina bifida (SB). This article discusses the SB Quality of Life Healthcare Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida. The focus of these QOL Guidelines was to summarize the evidence and expert opinions on how to mitigate factors that negatively impact QOL/HRQOL or enhance the factors positively related to QOL/HRQOL, the measurement of QOL/HRQOL and the gaps that need to be addressed in future research.

scholarly journals Health-Related Quality of Life in Children with Developmental Disorders

2021 ◽  
Author(s):  
Marina M. Schoemaker ◽  
Suzanne Houwen
Keyword(s):  
Quality Of Life ◽  
Developmental Disorders ◽  
Developmental Coordination Disorder ◽  
Autism Spectrum ◽  
Future Research ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Lower Hrqol

Abstract Purpose of Review (1) To give an overview of what is currently known about health-related quality of life (HRQoL) in three common and co-occurring developmental disorders: attention deficit hyperactivity disorder (ADHD), autism spectrum disorders (ASD), and developmental coordination disorder (DCD), and (2) to provide directions for future research. Recent Findings HRQoL is compromised in all three developmental disorders, affecting various domains of HRQoL. However, some domains are more affected than others depending on the nature of the core deficits of the disorder. Overall, parents’ rate HRQoL of their children lower than the children themselves. Children with ASD and ADHD with co-occurring disorders have lower HRQoL compared to those with singular disorders. Future studies in DCD are needed to investigate the effect of co-occurring disorder in this population. Summary Children with developmental disorders have lower HRQoL than typically developing children. Future research should focus on the effects of co-occurring disorders on HRQoL and on protective factors that may increase HRQoL. HRQoL should be a part of clinical assessment, as it reveals the areas in life children are struggling with that could be targeted during intervention.

scholarly journals DIFFERENTIATION OF HEALTH-RELATED QUALITY OF LIFE OUTCOMES BETWEEN FIVE DISEASE AREAS: RESULTS FROM AN INTERNATIONAL SURVEY OF PATIENTS

2018 ◽  
Vol 34 (5) ◽  
pp. 498-506 ◽  
Author(s):  
Olina Efthymiadou ◽  
Jean Mossman ◽  
Panos Kanavos
Keyword(s):  
Quality Of Life ◽  
Policy Decision ◽  
Future Research ◽  
Common Disease ◽  
Health Related Quality ◽  
Health Policy Decision ◽  
Related Quality ◽  
Health Related ◽  
Anxiety Depression

Objectives:Health-related quality of life (HRQoL) data generated by generic, preference-based instruments (i.e., EQ-5D) are highly demanded in health policy decision making, because they allow for direct comparisons of HRQoL outcomes between disease areas. We aimed to quantify HRQoL outcomes in breast cancer (BC), rheumatoid arthritis (RA), multiple sclerosis (MS), rare cancers (RC), and rare disease (RD) patients and understand the patterns that differentiate HRQoL outcomes between these disease areas, and more specifically between rare and more common disease population groups.Methods:An international, Web survey of patients measured HRQoL (EQ-5D-5L), self-perceived health (EQ-5D-5L Visual Analogue Scale), and additional QoL dimensions, such as patient disability level.Results:We received 675 completed responses. Average utility loss was 53.5 percent, 32.5 percent, and 33.3 percent for RD, RA, and MS patients, respectively, in contrast to 18.6 percent for BC and RC patients. Statistically significant differences (p < .05) were observed between disease groups in all EQ-5D-5L domain outcomes, apart from that of “Anxiety/Depression.” Severe and/or extreme problems were reported in performing usual activities for RD and RC (34 percent and 13 percent of overall problems reported respectively), mobility for MS (18 percent), pain/discomfort for RA (13 percent), and anxiety/depression for BC (7 percent) patients.Conclusions:We demonstrated significant differences in the dimensions that drive HRQoL outcomes between rare and more common diseases and showcased that the same EQ-5D utility may reflect very different severities depending on the patient population under investigation. Future research should examine whether outcomes in other, critical HRQoL domains not included in generic measures also highlight significant differences across disease areas.

scholarly journals Az informális ellátás mérése és egészség-gazdaságtani értékelése

2017 ◽  
Vol 158 (35) ◽  
pp. 1363-1372
Author(s):  
Zsombor Zrubka
Keyword(s):  
Quality Of Life ◽  
Health Economic ◽  
Informal Care ◽  
Economic Assessment ◽  
Future Research ◽  
Health Related Quality ◽  
Practical Applications ◽  
Related Quality ◽  
Health Related

Abstract: Informal care is non-financed care outside the realm of formal healthcare, which represents an increasing challenge for aging societies. Informal care has frequently been neglected in health economic analyses, while in recent years its coverage has increased considerably in the international scientific literature. This review summarizes the methodology of the health-economic assessment of informal care, including the objective and subjective metrics of caregiver burden, its financial and non-financial valuation and practical applications, with special emphasis on the introduction of care-related quality of life instruments (e.g. Care Related Quality of Life – CarerQoL instrument). Care-related quality of life is a different entity from health-related quality of life, the two cannot be combined, so their joint evaluation requires multi-criteria decision analysis methods. Therefore, it is important to determine the societal preferences of care-related quality of life versus health-related quality of life, and map the relationship of care-related quality of life with time. The local validation of tools measuring care-related quality of life, its more widespread practical application and the analysis of its effect on decision making are also important part of the future research agenda. Orv Hetil. 2017; 158(35): 1363–1372.

scholarly journals Clinical and Environmental Predictors of Health-Related Quality of Life in Lithuanian Children and Adolescents with Spina Bifida: A Cross-Sectional Analysis of a Nationally Represented Sample

Medicina ◽  
2018 ◽  
Vol 54 (4) ◽  
pp. 59 ◽  
Author(s):  
Indrė Bakanienė ◽  
Audronė Prasauskienė
Keyword(s):  
Quality Of Life ◽  
Spina Bifida ◽  
Children And Adolescents ◽  
Health Conditions ◽  
Health Related Quality ◽  
Medical Problems ◽  
Cross Sectional ◽  
Related Quality ◽  
Health Related

Background and objectives: In pediatric chronic health conditions, health-related quality of life (HRQOL) is a useful indicator of health, development, and well-being. The purpose of the study was to assess the effect of clinical and environmental factors on the HRQOL of children and adolescents with spina bifida (SB). Materials and methods: A cross-sectional study of the sample of 99 children and adolescents with SB aged 5 to 17 years. The questionnaires used in the study were the Spina Bifida Health-Related Quality of Life instrument (HRQOL-SB), and the Participation and Environment Measure for Children and Youth. Medical data were obtained from the medical records and the clinical examination. Results: A multivariate linear regression revealed that the most potent predictors of the HRQOL in children with SB were the community overall environmental supports (β = 0.504; p = 0.0001), a number of health conditions (β = −0.395; p = 0.0001), access to personal transportation (β = 0.236; p = 0.023), and supplies (β = 0.181; p = 0.031), explaining 80.3% of the variance in the SB-HRQOL scores. The most significant predictors of the HRQOL in adolescents were a number of health conditions (β = −0.387; p = 0.0001), cognitive demands of activities at home (β = 0.345; p = 0.0001), supplies (β = 0.267; p = 0.0001), money (β = 0.303; p = 0.0001), physical layout at school (β = 0.188; p = 0.008), and access to public transportation (β = 0.206; p = 0.019), explaining 89.5% of the variance in the SB-HRQOL scores. Conclusions: Both clinical and environmental factors determined the HRQOL of children and adolescents with SB. Environmental supports and resources contributed to HRQOL more than medical problems, especially in adolescents. The number of associated medical problems, reflecting disease severity, was the more potent clinical predictor compared to an individual health problem.

scholarly journals Research trends and hotspots of Health-Related Quality of Life: A Bibliometric Analysis from 2000 to 2019

2020 ◽  
Author(s):  
Si Zheng ◽  
Anqi He ◽  
Yu Yan ◽  
Lingling Jiang ◽  
Peigang Wang
Keyword(s):  
Quality Of Life ◽  
Bibliometric Analysis ◽  
Well Being ◽  
Research Trends ◽  
Annual Number ◽  
Future Research ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Abstract Purpose To analyze the global scientific output of health-related quality of life (HRQoL) research and figure out general trends and hotspots in HRQoL. Methods HRQoL research articles were collected from the Web of Science (WOS) database between 2000 and 2019. A bibliometric analysis was performed based on the number of articles, citations, published journals, authors' address and keywords. Descriptive analysis, visualization of geographic distribution and keyword clustering analysis were applied to the collected data. Results The annual number of articles showed a growth over the past twenty years, but the annual TA (Total Citations) and annual CPA (Citations Per Article) were both in decreasing trends. Articles about HRQoL were more likely to be published in journals of multi-subject categories, The HRQoL research was mainly distributed across North America and Europe throughout the twenty years and ushered in a vigorous development worldwide after 2015. Research institutions with high productivity in HRQoL research were more inclined to collaborate, but the cooperation strength between domestic institutions was much greater than that between international institutions. There were a large number of author keywords were only used once or twice during 2000 to 2019. SF-36, EQ-5D, depression, obesity, disability, oncology, fatigue were identified as hot research areas. Also, dementia, HIV, chronic disease, OHRQoL, PRO, stress, well-being, the elderly, women and children may become new hotspots in future research. Conclusion This study provided an overall perspective on global research trends and hotspots in HRQoL research, as well as a potential guide for future research. Researchers need to strengthen international cooperation, as well as pay more attention to the standardization and unity of keywords in future study.

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