scholarly journals Health‐related quality of life and health status in adolescent and adult people with haemophilia A without factor VIII inhibitors—A non‐interventional study

Haemophilia ◽  
2021 ◽  
Author(s):  
Johannes Oldenburg ◽  
Huyen Tran ◽  
Flora Peyvandi ◽  
Ramiro Núñez ◽  
Peter Trask ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Factor Viii ◽  
Haemophilia A ◽  
Health Related Quality ◽  
Interventional Study ◽  
Related Quality ◽  
Health Related

scholarly journals Health‐related quality of life and health status in persons with haemophilia A with inhibitors: A prospective, multicentre, non‐interventional study (NIS)

Haemophilia ◽  
2019 ◽  
Vol 25 (3) ◽  
pp. 382-391 ◽  
Author(s):  
Johnny Mahlangu ◽  
Johannes Oldenburg ◽  
Michael U. Callaghan ◽  
Midori Shima ◽  
Maria Elisa Mancuso ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Haemophilia A ◽  
Health Related Quality ◽  
Interventional Study ◽  
Related Quality ◽  
Health Related

scholarly journals Health‐related quality of life and caregiver burden of emicizumab in children with haemophilia A and factor VIII inhibitors—Results from the HAVEN 2 study

Haemophilia ◽  
2020 ◽  
Vol 26 (6) ◽  
pp. 1009-1018
Author(s):  
Maria Elisa Mancuso ◽  
Johnny Mahlangu ◽  
Robert Sidonio ◽  
Peter Trask ◽  
Marianne Uguen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Factor Viii ◽  
Caregiver Burden ◽  
Haemophilia A ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Mental Health Status and Health-Related Quality of Life among Systemic Lupus Erythematosus (SLE) Patients in Thailand: A Multi-Site Study

2020 ◽  
Vol 103 (11) ◽  
pp. 1185-1193
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Health Status ◽  
Lupus Erythematosus ◽  
Self Esteem ◽  
Mental Health Status ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Background: The systemic lupus erythematosus (SLE) patients oftentimes suffer from both physical and psychosocial challenges that may lead to low health-related quality of life (HRQoL). However, limited research has been done in this area. Objective: To examined mental health status and HRQoL among SLE patients in Thailand. Materials and Methods: The present study was a cross-sectional study conducted at the rheumatology clinic of four major hospitals in Thailand. The paper-based questionnaire consisted of demographic, health history such as depression, anxiety, stress Scale (DASS-21), and the Rosenberg self-esteem scale (RSE), and the disease-specific Lupus Quality of Life scale (LupusQoL). Depending on the variable’s level of measurement such as categorical or continuous, Spearman’s Rho or Pearson’s product moment correlation coefficients were used to explore the relationships among the variables. Hierarchical multiple regression was used to identify the predictors of LupusQoL. Results: Among the 387 participants, many might have experienced depression, anxiety, and stress (30%, 51%, and 29%, respectively). Self-esteem among the participants was good (31.8 out of 40). All eight domains of LupusQoL were affected with intimate relationship domain being impacted the most. The overall LupusQoL was significantly associated with the number of prescribed medications (r=–0.23), depression (r=–0.70), anxiety (r=–0.58), stress (r=–0.67), and self-esteem (r=0.59), p<0.001. Significant predictors of the overall LupusQoL were mental health status (depression, anxiety, and stress) and self-esteem, F (3, 81)=43.10, p<0.001, adjusted R²=0.60. Conclusion: SLE patients should be holistically assessed in both physical and psychological aspects. In addition to proper medical treatments, healthcare providers should use a multidisciplinary team approach to resolve the patients’ psychosocial issues, which in turn, may increase the patients’ quality of life. Self-care education may be necessary to help the patients manage the condition and decrease the number of medications. Keywords: Mental health, Quality of life, SLE, Thailand

scholarly journals P139 What impact does JIA have on health-related quality of life over time and by gender?

Rheumatology ◽  
2020 ◽  
Vol 59 (Supplement_2) ◽  
Author(s):  
Andrew Smith ◽  
Bishma Saqib ◽  
Rebecca Lee ◽  
Wendy Thomson ◽  
Lis Cordingley
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Child Health ◽  
Reference Population ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Over Time ◽  
Domain Scores

Abstract Background Juvenile idiopathic arthritis (JIA) is a heterogeneous group of arthritic conditions presenting in children and young people, in which physical limitations and associated complications can have detrimental effects on physical and psychosocial wellbeing. This study aims to investigate the impact of living with JIA on different aspects of health-related quality of life (HRQoL) and to explore how this changes over time, using data from the Childhood Arthritis Prospective Study (CAPS). Methods Longitudinal data collected as part of CAPS were analysed. HRQoL was assessed at baseline, 1 year and 3 years’ post-diagnosis using the Child Health Questionnaire (CHQ), a parent-completed form for children from 5 years of age. The CHQ measures physical, emotional and social components of child health status. Raw domain scores were transformed via algorithm into values ranging from 0-100, with higher scores indicating better health status. Mean (standard deviation) and median (interquartile range) for each domain were determined, both for the full cohort and by gender. Differences between median scores at baseline and 3 years were assessed using the Wilcoxon signed-rank test. Mean scores of each domain were visually compared with a reference population sample of healthy children from the United States. Results 184 participants completed the questionnaire at all 3 time points. At baseline, compared to the reference population, children with JIA scored lower in every domain although scores were closer between the 2 groups at 3 years. Median scores improved over time, the exception being the general health perceptions domain which decreased after baseline. Domains with the greatest improvement were physical functioning,“bodily pain and social-physical. The largest changes occurred from baseline to 1 year. Statistically significant differences between baseline and 3-year scores were found for all domains. Domain scores for male and female participants were very similar at baseline, though scores for male participants indicated slightly better health at 1 and 3 years for both physical and psychosocial domains. Conclusion JIA has significant impact on HRQoL, which improves within 3 years of diagnosis with the greatest improvement occurring within the first year. Physical health domains show greater improvement over time than psychosocial domains, although psychosocial scores were generally higher throughout the study. Male participants tend to score slightly higher than female participants in both physical and psychosocial domains after baseline. Further research should explore measurable patient, age or disease-related drivers of HRQoL. Disclosures A. Smith None. B. Saqib None. R. Lee None. W. Thomson None. L. Cordingley None.

Quality of life along the diabetes continuum: a cross-sectional view of health-related quality of life and general health status in middle-aged and older Finns

2014 ◽  
Vol 23 (7) ◽  
pp. 1935-1944 ◽  
Author(s):  
Saku Väätäinen ◽  
Sirkka Keinänen-Kiukaanniemi ◽  
Jouko Saramies ◽  
Hannu Uusitalo ◽  
Jaakko Tuomilehto ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
General Health ◽  
Health Related Quality ◽  
General Health Status ◽  
Middle Aged ◽  
Cross Sectional ◽  
Related Quality ◽  
Health Related
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