scholarly journals The impact of fatigue in rheumatoid arthritis and the challenges of its assessment

Rheumatology ◽  
2019 ◽  
Vol 58 (Supplement_5) ◽  
pp. v3-v9 ◽  
Author(s):  
Eduardo J F Santos ◽  
Catia Duarte ◽  
José A P da Silva ◽  
Ricardo J O Ferreira
Keyword(s):  
Gold Standard ◽  
Health Related Quality ◽  
Current Management ◽  
Global Impact ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Great Burden

Abstract Fatigue is one of the most important symptoms for patients with RA, and imposes a great burden on patients’ lives, being associated with significantly reduced health-related quality of life. Although being recognized by the rheumatology community as a major gap in the current management of the disease, fatigue has not been easy to measure and conceptualize. Part of the problem seems to reside in the multidimensional causality of this phenomenon, which may warrant dedicated measures and interventions. Although there are several instruments available to measure it, no consensus has yet been reached to recommend a ‘gold-standard’. This review aims at synthesizing the role of fatigue in the global impact of RA; describing validated instruments and their psychometric properties as measures of fatigue among patients with RA; and finally proposing a clinically meaningful, valid and feasible process to measure fatigue in clinical practice.

Health-Related Quality of Life in the Aftermath of the L’Aquila Earthquake in Italy

2015 ◽  
Vol 10 (1) ◽  
pp. 11-15 ◽  
Author(s):  
Antonella Gigantesco ◽  
Paolo D’Argenio ◽  
Vincenza Cofini ◽  
Cristiana Mancini ◽  
Valentina Minardi
Keyword(s):  
Quality Of Life ◽  
Suicide Rate ◽  
L’Aquila Earthquake ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Related Quality ◽  
Health Related ◽  
The Impact

AbstractObjectiveA recent article reported a reduction in the suicide rate in the inhabitants of L’Aquila (Italy) in 2009, when on the night of April 6, a devastating earthquake struck the city. The potential implications of the role of resilience in the aftermath of natural disasters, together with the limitations of existing evidence on this topic, suggest a need for more research. We aimed to retrospectively investigate the impact of the L’Aquila earthquake on a standardized self-reported measure of health-related quality of life (HRQoL).MethodsHRQoL data were collected through 2 separate cross-sectional surveys conducted during 2008 and 2010, before and after the earthquake that occurred in 2009, on 2 random samples of adults living in L’Aquila.ResultsThe data seemed to suggest no decrease in the inhabitants’ HRQoL level after the disaster, which may suggest the role of resilience in supporting survivors’ HRQoL. The findings were also consistent with previous observations of a reduction in the suicide rate in the same inhabitants after the earthquake.ConclusionsAfter a natural disaster, people likely activate personal resources and protective social factors that result in better subjective outcomes. (Disaster Med Public Health Preparedness. 2016;10:11-15)

What is the role of prophylaxis in the improvement of health-related quality of life of patients with hemophilia?

Hematology ◽  
2013 ◽  
Vol 2013 (1) ◽  
pp. 52-55 ◽  
Author(s):  
David Buchbinder ◽  
Margaret V. Ragni
Keyword(s):  
Quality Of Life ◽  
Health Related Quality ◽  
The Past ◽  
Related Quality ◽  
Health Related ◽  
History Of ◽  
Lost Time ◽  
The Impact

Abstract A 32-year-old male with severe hemophilia presents for his annual evaluation. He has a history of multiple joint bleeds that he has always treated on-demand, that is, after they occur. You have recommended prophylaxis, that is, preventively, before they occur, to decrease his episodes of bleeding; however, he had been reluctant to comply in the past. He is having difficulty keeping up at work because of interruptions, pain, and lost time at work. He is willing to consider a trial of prophylaxis. You discuss the impact of hemophilia on his health-related quality of life (HRQOL) and consider measuring his HRQOL over time using a generic measure of HRQOL to determine whether prophylaxis will reduce interruptions, pain, and lost time from work and improve his HRQOL.

Role of contextual factors in health-related quality of life in ankylosing spondylitis

2009 ◽  
Vol 69 (01) ◽  
pp. 108-112 ◽  
Author(s):  
V S Gordeev ◽  
W P Maksymowych ◽  
S M A A Evers ◽  
A Ament ◽  
L Schachna ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ankylosing Spondylitis ◽  
Disease Activity ◽  
Contextual Factors ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Background:In the bio-psycho-social model of health, the role of contextual factors, either environmental or personal, is recognised.Objective:To assess the impact of a number of contextual factors on self-reported disease-specific and generic health-related quality of life in patients with ankylosing spondylitis (AS).Methods:522 patients with AS from Canada and Australia completed a postal questionnaire including sociodemographic variables, disease activity (Bath Ankylosing Spondylitis Disease Activity Index (BASDAI)) function (Bath Ankylosing Spondylitis Functional Index (BASFI)) health-related quality of life (ASQoL and EQ-5D) and Rheumatoid Attitudes Index Helplessness Subscale. The contribution of contextual factors (nationality, ethnicity, marital status, education, employment and helplessness) in addition to functioning and disability (BASDAI and BASFI) to health-related quality of life was analysed using multivariate regression analyses. Interactions between contextual variables were explored.Results:Contextual factors explained 37% and 47% of the variance in EQ-5D and ASQoL, respectively. Helplessness and employment were the most important contextual factors. Their role was independent of the strong effect of disease activity (BASDAI) and functional limitations (BASFI). When ASQoL was the outcome, an interaction was seen between employment and education and when EQ-5D was the outcome, an interaction was seen between helplessness and education.Conclusions:Of the contextual factors explored in this study, helplessness and employment had an important and independent contribution to health-related quality of life. In patients with lower education, the effect of not being employed on ASQoL and the effect of helplessness on EQ-5D were stronger. Contextual factors, especially helplessness and employment, should receive more attention when interpreting data on health-related quality of life.

ACCESSIBLE HOUSING AND HEALTH-RELATED QUALITY OF LIFE: MEASUREMENTS OF WELLBEING OUTCOMES FOLLOWING HOME MODIFICATIONS

2016 ◽  
Vol 10 (2) ◽  
pp. 38 ◽  
Author(s):  
Phillippa Carnemolla ◽  
Catherine Bridge
Keyword(s):  
Quality Of Life ◽  
Mixed Method ◽  
Exploratory Research ◽  
Health Related Quality ◽  
Care Giving ◽  
Home Modifications ◽  
Related Quality ◽  
Health Related ◽  
The Impact

The multi-dimensional relationship between housing and population health is now well recognised internationally, across both developing and developed nations. This paper examines a dimension within the housing and health relationship – accessibility – that to date has been considered difficult to measure. This paper reports on the mixed method results of larger mixed-method, exploratory study designed to measure the impact of home modifications on Health-Related Quality of Life, supported by qualitative data of recipients’ experiences of home modifications. Data was gathered from 157 Australian HACC clients, who had received home modifications. Measurements were taken for both before and after home modifications and reveal that home modifications were associated with an average 40% increase in Health-Related Quality of Life levels. The qualitative results revealed that participants positively associated home modifications across six effect themes: increased safety and confidence, improved mobility at home, increased independence, supported care-giving role, increased social participation, and ability to return home from hospital. This exploratory research gives an insight into the potential for accessible architecture to impact improvements in community health and wellbeing.

scholarly journals The impact of lymphedema on health-related quality of life up to 10 years after breast cancer treatment

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Mads G. Jørgensen ◽  
Navid M. Toyserkani ◽  
Frederik G. Hansen ◽  
Anette Bygum ◽  
Jens A. Sørensen
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Cancer Treatment ◽  
Breast Cancer Treatment ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

AbstractThe impact of breast cancer-related lymphedema (BCRL) on long-term quality of life is unknown. The aim of this study was to investigate the impact of BCRL on health-related quality of life (HRQoL) up to 10 years after breast cancer treatment. This regional population-based study enrolled patients treated for breast cancer with axillary lymph node dissection between January 1st 2007 and December 31th 2017. Follow up and assessments of the included patients were conducted between January 2019 and May 2020. The study outcome was HRQoL, evaluated with the Lymphedema Functioning, Disability and Health Questionnaire, the Disabilities of the Arm, Shoulder and Hand Questionnaire and the Short Form (36) Health Survey Questionnaire. Multivariate linear logistic regression models adjusted for confounders provided mean score differences (MDs) with 95% confidence intervals in each HRQoL scale and item. This study enrolled 244 patients with BCRL and 823 patients without BCRL. Patients with BCRL had significantly poorer HRQoL than patients without BCRL in 16 out of 18 HRQoL subscales, for example, in physical function (MDs 27, 95%CI: 24; 30), mental health (MDs 24, 95%CI: 21; 27) and social role functioning (MDs 20, 95%CI: 17; 23). Age, BMI, BCRL severity, hand and dominant arm affection had only minor impact on HRQoL (MDs < 5), suggesting a high degree of inter-individual variation in coping with lymphedema. This study showed that BCRL is associated with long-term impairments in HRQoL, especially affecting the physical and psychosocial domains. Surprisingly, BCRL diagnosis rather than clinical severity drove the largest impairments in HRQoL.

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