scholarly journals Health-Related Quality of Life in Adrenocortical Carcinoma

Cancers ◽  
2019 ◽  
Vol 11 (10) ◽  
pp. 1500 ◽  
Author(s):  
Rebecca V. Steenaard ◽  
Laura A. Michon ◽  
Harm R. Haak
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Adrenocortical Carcinoma ◽  
Treatment Options ◽  
Clinical Aspects ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Insight into the health-related quality of life (HRQoL) impact of adrenocortical carcinoma (ACC) is important. The disease and its treatment options potentially have an impact on HRQoL. For patients with limited survival, HRQoL research is of utmost importance. We will therefore provide an overview of HRQoL studies in patients with ACC. We found six studies that measured HRQoL in 323 patients with ACC (3 cross-sectional, 1 cohort, 2 trials), all indicating a reduced HRQoL compared to the general population. The FIRMACT trial found that HRQoL of patients with ACC was reduced compared to the general population, and that chemotherapy-mitotane further reduced HRQoL even though survival improved. Clinical aspects of the disease, including cortisol and aldosterone production and adrenal insufficiency have shown great impact on HRQoL in benign disease, even after the recovery of hormonal status. However, the impact of malignant adrenal disease and treatment options on HRQoL including adrenalectomy, radiotherapy, mitotane therapy, and chemotherapy have not been sufficiently studied in patients with ACC. Although the number of HRQoL studies in patients with ACC is limited, the existing literature does indicate that ACC has a large impact on patients’ HRQoL, with disease specific aspects. Further HRQoL research in patients with ACC is essential to improve patient-centered care, preferably by using an ACC-specific HRQoL questionnaire.

Health-Related Quality of Life and Mental Health in Primary Aldosteronism: A Systematic Review

2017 ◽  
Vol 49 (12) ◽  
pp. 943-950 ◽  
Author(s):  
Marieke Velema ◽  
Aline de Nooijer ◽  
Vivian Burgers ◽  
Ad. Hermus ◽  
Henri Timmers ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
General Population ◽  
Primary Aldosteronism ◽  
Health Related Quality ◽  
Inclusion Criteria ◽  
Related Quality ◽  
Health Related ◽  
The Impact

AbstractThe aim of this review was to determine the impact of primary aldosteronism on health-related quality of life (HRQoL) and mental health. We performed a systematic literature search up to July 2017 in six electronic databases. First, we screened the articles derived from this search based on title and abstract. Second, the selected studies were systematically reviewed and checked for our predefined inclusion criteria. The search yielded 753 articles, of which 15 studies met our inclusion criteria. Untreated patients with primary aldosteronism showed an impaired physical and mental HRQoL as compared to the general population. Multiple domains of HRQoL were affected. This applied to patients with both an aldosterone-producing adenoma and bilateral adrenal hyperplasia. Adrenalectomy improves HRQoL. Conflicting results have been reported on the extent of this improvement, the improvement after initiation of medical treatment, and whether there is a difference in HRQoL after both treatments. Similarly, psychopathological symptoms of anxiety, demoralization, stress, depression and nervousness were more frequently reported in untreated patients with primary aldosteronism than in the general population and patients with hypertension. Also an impaired sleep quality has been reported. Improvement of these symptoms was observed after treatment with both adrenalectomy and mineralocorticoid receptor antagonists. This review shows that HRQoL is impaired and psychopathology is more frequently reported in patients with primary aldosteronism. This seems to be at least partly reversible after treatment but the extent of improvement remains unknown. To assess HRQoL in these patients more precisely a primary aldosteronism-specific HRQoL questionnaire is required.

scholarly journals Comparison of Instruments for Measuring Health-Related Quality of Life and Their Applicability to Ehealth Applications

2021 ◽  
Author(s):  
Marlene Schmidt ◽  
Martin Staemmler
Keyword(s):  
Quality Of Life ◽  
Treatment Options ◽  
Health Issues ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Hrqol Assessment ◽  
Adherence Monitoring ◽  
The Impact

Health-related Quality of Life (HRQoL) assessment has proven as a good means for assessing treatment options or impact of applications supporting the patient in adherence, monitoring and better understanding of health issues. While most of the HRQoL instruments were designed several years ago, their capability to assess the impact of ehealth application is in question. The objective of this paper is to assess HRQoL instruments including a focus on the ehealth domain. Methods: Generic and specific instruments are selected based on their widespread use. Published criteria for assessing HRQoL instruments are used for a baseline, which are amended by criteria covering both the ehealth domain and the conditions of use of instruments and structured in groups. Results: Seven instruments have been selected and assessed using the established criteria. The instruments scored differently regarding the ehealth domain, however overall rather low. Applying weighting per group allows highlighting specific aspects. Based on the assessment, further research should consider the development of a ehealth domain module as part of the specific instruments.

scholarly journals Health-related quality of life in Croatian general population and multiple myeloma patients assessed by the EORTC QLQ-C30 and EORTC QLQ-MY20 questionnaires

2019 ◽  
Vol 53 (3) ◽  
pp. 337-347 ◽  
Author(s):  
Sanja Ledinski Ficko ◽  
Vlatko Pejsa ◽  
Vesna Zadnik
Keyword(s):  
Quality Of Life ◽  
Multiple Myeloma ◽  
General Population ◽  
Health Related Quality ◽  
Related Quality ◽  
Eortc Qlq C30 ◽  
Health Related ◽  
Eortc Qlq ◽  
The Impact

Abstract Background The impact of disease and treatment on the patient’s overall well-being and functioning is a topic of growing interest in clinical research and practice. The aim of this study is to obtain reference data on quality of life of Croatian general population. Further, we aim to assess the impact of the disease and its primary systemic treatment on their health related quality of life (HrQoL) in multiple myeloma (MM) patients. Patients and methods Participants for the first part of the study were randomly selected from adult Croatian population. In the clinical part of the study MM patients were included as prospectively diagnosed within two years in two major Croatian haematological centres. The EORTC QLQ-C30 in both trials and QLQ-MY20 in MM patients only were applied for HrQoL assessment. Results Gender, age and place of residence have great impact on quality of life scores in Croatian population. The MM patients at the time of diagnosis have lower QLQ-C30 scores for global quality of life, functional and symptom scale scores, as well as single items. The type of disease followed by the choice of therapy options are important HrQoL determinants. Conclusions The norm values available now for Croatian population will help to interpret HrQoL for clinicians and aid in planning cancer care interventions. This study identified treatment effect consistent with those from other observational studies and provided new data on HrQoL across two different treatment choices for MM patients.

The Impact of 29 Chronic Conditions on Health-related Quality of Life: A General Population Survey in Finland Using 15D and EQ-5D

2006 ◽  
Vol 15 (8) ◽  
pp. 1403-1414 ◽  
Author(s):  
Samuli I. Saarni ◽  
Tommi Härkänen ◽  
Harri Sintonen ◽  
Jaana Suvisaari ◽  
Seppo Koskinen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Chronic Conditions ◽  
Population Survey ◽  
Health Related Quality ◽  
General Population Survey ◽  
Related Quality ◽  
Health Related ◽  
The Impact

scholarly journals Health related QoL in Celiac Disease patients in Slovenia

2020 ◽  
Author(s):  
Eva Turk ◽  
Dusanka Micetic-Turk ◽  
Maja Šikić-Pogačar ◽  
Alojz Tapajner ◽  
Veljko Vlaisavljević ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Celiac Disease ◽  
General Population ◽  
Urban Setting ◽  
Health Related Quality ◽  
Validated Questionnaire ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Abstract Background: Measurements of health-related quality of life among celiac disease patients using a validated questionnaire have been lacking in Slovenia. This study aims to measure Health related quality of life (HRQoL) in celiac disease (CD) patients using EQ-5D internationally validated questionnaire and comparing it to the HRQoL of the general population. Methods: In this cross sectional analysis all of the approximately 2,000 members of the Slovenian Celiac Society were invited to take part. We used a 3 step approach for recruitment and data collection. HRQoL was evaluated through the EuroQoL EQ-5D-5L instrument (Slovenian version) and analysed using the ordinal logistic regression. Results: Out of 321 patients who gave their consent, 247 celiac patients were included in the study (77%). 68% of the participants were female and 53% of them lived in an urban setting. Most patients originated from North-East Slovenia, whereas approximately 30% of patients came from other Slovenian regions. The EQ-5D respondents’ self-reported health status at the time of the study show that most patients have slight or no problems when living with CD. The duration of the gluten-free diet, academic education and rare (<1x year) doctor visits (affect EQ-5D in a positive way. On the other hand, higher age and chronic rheumatic disease were negatively associated with EQ-5D also when compared to the general population. Conclusion: This is the first Slovenian study to measure the HRQoL of Slovenian CD patients, using an internationally validated questionnaire. The results of our study show that HRQoL is slightly impaired among Slovenian patients with CD. Clinical characteristics are better determinants of their HRQoL than socio-demographic factors. Greater awareness of the impact of CD on patients’ HRQoL would improve the holistic management of CD patients.

scholarly journals 509 Health-Related Quality of Life in Narcolepsy: A Systematic Review and Meta-Analysis

SLEEP ◽  
2021 ◽  
Vol 44 (Supplement_2) ◽  
pp. A200-A201
Author(s):  
Ragy Tadrous ◽  
Deirdre O’Rourke ◽  
Julie Broderick ◽  
David Mockler
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Systematic Review ◽  
General Population ◽  
Meta Analysis ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Abstract Introduction Narcolepsy is a neurological condition that has been associated with considerable detriment to daily life including impaired quality of life, occupational and academic difficulties and adversely affected social and personal relationships. To date, there has been no systematic analysis of the literature regarding health-related quality of life (HRQoL) in Narcolepsy. This systematic review aimed to examine the impact of narcolepsy on HRQoL, measured through standardised HRQoL questionnaires such as the Short Form 36 (SF36). Methods Medline, Embase, Cinahl and Web of Science were searched for studies which investigated HRQoL in adults with narcolepsy. Studies were reviewed independently by two reviewers, and a random-effects meta-analysis was performed. The methodological quality of the included studies was assessed using a modified version of the Joanna Briggs Institute Checklist for Analytical Cross Sectional Studies tool. The impact of study variables and characteristics on HRQoL was assessed using Spearman’s Correlation analyses with adjusted r2 values. Results A total of 30 studies were eligible for inclusion in the review. Additionally, meta-analyses were conducted for the SF36 and the EQ5D. The SF36 meta-analysis identified that the pooled mean scores for the Physical Component Summary (45.91) were less affected than the Mental Component Summary (42.98). The HRQoL of people with narcolepsy was compared to general population norms (US, UK, France and Norway) and to people with chronic diseases including multiple sclerosis, diabetes, and epilepsy. Conclusion People with narcolepsy report significant impairments in HRQoL when compared to the general population and other chronic health conditions including epilepsy, multiple sclerosis, diabetes and hypertension, especially concerning their mental wellbeing. Further research is warranted to identify the longitudinal effects of narcolepsy on HRQoL and to develop a narcolepsy-specific HRQoL tool. Support (if any) This review was completed as part of Mr Ragy Tadrous’ Master of Science (MSc) degree in Trinity College Dublin. This degree was co-sponsored by the Physiotherapy Department in St. James’s Hospital, Dublin.

scholarly journals Oral Health-Related Quality of Life Outcomes for Individuals with Disabilities: A Review

2020 ◽  
Author(s):  
AlBandary Hassan AlJameel
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
General Population ◽  
Health Related Quality ◽  
Individuals With Disabilities ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Individuals with disabilities experience poor oral health status and poor access to health care services due to many barriers. This can negatively affect their well-being and Quality of Life (QoL). The important benchmark to determine the impact of oral health conditions were clinical examinations using established indices. Relying only on clinical assessments and objective measures lead to the ignorance of patients’ perspectives and subjective aspects of oral health assessments that consequently gave an incomplete picture of patients’ experiences. There are various Oral Health-Related Quality of Life (OHRQoL) tools which can determine or measure patient-reported outcomes to assess the impacts of oral diseases and/or conditions among the general population. This article aims at reviewing the commonly-reported OHRQoL measures among adults and children of the general population. The OHRQoL studies conducted among individuals with disabilities, and findings of existing studies are also covered in this paper.

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