scholarly journals Health-Related Quality of Life in Gilles de la Tourette Syndrome: A Decade of Research

2013 ◽  
Vol 27 (1) ◽  
pp. 83-93 ◽  
Author(s):  
Andrea Eugenio Cavanna ◽  
Kate David ◽  
Valentina Bandera ◽  
Cristiano Termine ◽  
Umberto Balottin ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Tourette Syndrome ◽  
Young Patients ◽  
Current Evidence ◽  
Future Research ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Gilles de la Tourette syndrome (GTS) is a neurodevelopmental condition characterised by multiple motor and phonic tics and associated behavioural problems, carrying a significant burden on patients' lives. Although the term health related-quality of life (HR-QOL) has only been used in recent years, several studies have long addressed the impact of GTS on physical, psychological and social aspects of wellbeing of both children and adults with GTS. We set out to answer the question "Is HR-QOL affected by GTS and, if so, in what domains?" by conducting a systematic literature review of published original studies addressing HR-QOL in both children and adult patients with GTS. This review focuses on the current evidence on the impact of GTS on patients' lives, mainly informed by studies using generic functional impairment and HR-QOL measures from the last decade, and expands on the new opportunities introduced by the recently developed GTS-specific HR-QOL scales (GTS-QOL and GTS-QOL-C&A). Analysis of the first decade of studies specifically addressing HR-QOL in GTS suggests that co-morbid conditions are key factors in determining HR-QOL in young patients, whilst the picture is more complex in adults with GTS. These findings offer some general directions for both current clinical practice and future research.

scholarly journals Parent and Self-Report Health-Related Quality of Life Measures in Young Patients With Tourette Syndrome

2012 ◽  
Vol 28 (10) ◽  
pp. 1305-1308 ◽  
Author(s):  
Andrea E. Cavanna ◽  
Chiara Luoni ◽  
Claudia Selvini ◽  
Rosanna Blangiardo ◽  
Clare M. Eddy ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Tourette Syndrome ◽  
Young Patients ◽  
Self Report ◽  
Health Related Quality ◽  
Quality Of Life Measures ◽  
Related Quality ◽  
Health Related

Health-Related Quality of Life in Sarcoidosis

2020 ◽  
Vol 41 (05) ◽  
pp. 716-732
Author(s):  
Ogugua Ndili Obi
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcome Measures ◽  
Future Research ◽  
Health Related Quality ◽  
Specific Patient ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Impact

AbstractHealth-related quality of life (HRQoL) describes an individual's perception of the impact of health, disease, and treatment on their quality of life (QoL). It is a reflection of how the manifestation of an illness and its treatment is personally experienced. Assessing HRQoL is particularly important in sarcoidosis because the attributable disease mortality is relatively low, and one of the major reasons for initiating treatment is to improve quality of life. HRQoL has been assessed in sarcoidosis using various generic and sarcoid-specific patient-reported outcome measures (PROMs). It is important that both the direct and indirect effects of the disease, as well as potential toxicities of therapy, are captured in the various PROMs used to assess HRQoL in sarcoidosis. This article provides a general overview of HRQoL in patients with sarcoidosis. It describes the various PROMs used to assess HRQoL in sarcoidosis and addresses the various factors that influence HRQoL in sarcoidosis. Specific attention is paid to fatigue, small fiber neuropathy, corticosteroid therapy, and other disease-specific factors that affect HRQoL in sarcoidosis. It also provides an insight into interventions that have been associated with improved HRQoL in sarcoidosis and offers suggestions for future research in this important area.

scholarly journals Health-Related Quality of Life after Cystectomy and Urinary Diversion for Bladder Cancer

2011 ◽  
Vol 2011 ◽  
pp. 1-5 ◽  
Author(s):  
Cheryl Shih ◽  
Michael P. Porter
Keyword(s):  
Quality Of Life ◽  
Bladder Cancer ◽  
Urinary Diversion ◽  
Future Research ◽  
Complication Rates ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

With multiple options for urinary diversion after radical cystectomy for bladder cancer that have comparable cancer control and complication rates, health-related quality of life (HRQOL) has become an important consideration. This article reviews the methods for defining HRQOL, the challenges in measuring HRQOL in bladder cancer, and the literature comparing HRQOL after various methods of urinary diversion. Recent contributions include the validation of HRQOL instruments specific to bladder cancer and the publication of several prospective studies measuring HRQOL outcomes after cystectomy and urinary diversion. There is no convincing evidence from existing literature that any particular method of urinary diversion offers superior HRQOL outcomes. Rather, there is growing evidence that good HRQOL can be achieved with patient education and consideration of each patient's clinical and psychosocial situation. Future research should utilize the validated bladder cancer specific HRQOL instruments and perhaps explore the impact of preoperative counseling on postoperative HRQOL.

scholarly journals Health-Related Quality of Life of Children and Adolescents With Congenital Hyperinsulinism – A Scoping Review

2021 ◽  
Vol 12 ◽  
Author(s):  
Kaja Kristensen ◽  
Julia Quitmann ◽  
Stefanie Witt
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Scoping Review ◽  
Young Patients ◽  
Congenital Hyperinsulinism ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

IntroductionDespite improvements in diagnosis and therapeutic advances in treatment, congenital hyperinsulinism (CHI) remains a severe disease with high patient impairment. We aimed to review the literature on Health-related Quality of Life in children and adolescents with congenital hyperinsulinism and summarize the findings.Materials and MethodsFor this scoping review, a literature search was conducted in PubMed and Web of Science in May 2021. Inclusion and exclusion criteria for the selection of articles were defined a priori.ResultsTwo hundred and forty-five (245) articles were identified through the search and screened on the basis of title and abstract. The full texts of forty articles were then assessed. Finally, four articles (published 2012-2020) describing Health-related Quality of Life in children and adolescents with congenital hyperinsulinism were included. The study designs were heterogeneous and included cross-sectional observational studies (n=2), clinical trials (n =1), and case reports (n=1) with different sample sizes. Three studies were conducted in European countries and one in Japan. The results for Health-related Quality of Life revealed inconsistencies.ConclusionThere are only a few studies looking at Health-related Quality of Life in children and adolescents with congenital hyperinsulinism. To gain a comprehensive understanding of the impact of congenital hyperinsulinism on Health-related Quality of Life in children and adolescents, it is necessary to use both generic and condition-specific instruments to measure Health-related Quality of Life of young patients in larger samples, to collect longitudinal data, and to consider qualitative research approaches.

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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